7:00 PM19:00

FILM: Love in Our Own Time

Tom Murray

This special screening of the film 'Love in Our Own Time' aims to give conference participants a different space for reflection on their work and ideas for teaching, training and community awareness raising.

The film, a documentary about birth, love, and death is set in Sydney and follows palliative care doctor Frank Brennan, and a number of palliative care nurses and midwives. The film is currently being used by professional organisations and educational institutions in areas such as medicine, palliative care, bereavement services, nursing, sociology, anthropology, psychotherapy, and psychology, and has also been embraced by community organizations who aim to raise discussion about issues relating to death and dying. Further information about the film is available on the website loveinourowntime.com.

Following the film screening, Dr Frank Brennan and Dr Tom Murray would be available for post-screening conversations and/or a panel discussion, with an openness to other formats suggested by the conference committee.

Originality: This project employs a creative-arts practice (long-term, trust-based, observational documentary) to gain access to, and capture, moments of experience unavailable through other means. Through this innovative practice-based creative methodology audiences are invited to bear witness to intimacies of personal, inter-personal, and clinical significance.

The film offers a very different learning modality for practitioners to reflect on their work and their own attitudes to death and dying.

Contextualised: Feedback concerning the educational value of the film indicates that through its audio-visual depictions of events, its contextualises death and dying within a frame of love and life more generally, and through its pacing, it creates a reflective and discursive space that works well alongside more traditional forms of professional development.

Artistic Value: This work, produced by multi-award winning filmmakers, demonstrates the capacity of the cinematic arts to make critical discursive interventions into medical practice.

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Performance: Where Song Began, a musical celebration of Australia's birds and how they shaped the world
5:30 PM17:30

Performance: Where Song Began, a musical celebration of Australia's birds and how they shaped the world

Where Song Began’ is a musical celebration of Australia’s birds and how they shaped the world.

Inspired by leading ornithologist Tim Low’s award-winning book, this 50-minute performance explores the Australian origins of song, ‘the birds that can sing’. Such is their evolutionary significance, ‘one may ask whether human music would have reached the heights it has, had the first songbird not sung in an Australian rainforest.’

This work encourages the audience to contemplate the origin of song and the importance of Australia's rich and colourful bird history. The program includes music spanning 300 years, from Johann Heinrich Schmelzer and J.S. Bach to Arvo Pärt and new Australian works, enhanced by a film of evocative visual projections, and an immersive soundscape.

About the performers: Simone Slattery was a 2018 Churchill Fellow, received a PhD in Music Performance from the University of Adelaide and performs regularly with Australia’s finest ensembles. Anthony Albrecht is an Australian graduate of The Juilliard School’s Historical Performance program and enjoys an international career.

Performance length: 60 minutes without interval, including a Q&A


Arvo Pärt - Fratres for solo violin, 1977

Sarah Hopkins - Reclaiming the Spirit, 1993

Vaughan Williams - The Lark Ascending, 1917

Chris Williams - bird, songs, seas, 2017

Ross Edwards - Ecstatic Dance No.2, 1990

Johann Heinrich Schmelzer - Cucu Sonata, 1664

J.S. Bach - Prelude from Cello Suite No.1, c.1720

David Lang - Anthochaera carunculate (Red Wattle Bird), New Commission, 2017

Ngarra Burra Ferra - Traditional Indigenous hymn

ABC Radio National Feature: https://www.abc.net.au/radionational/programs/offtrack/where-song-began/9811914

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Plenary 3 (BALLROOM)
3:30 PM15:30

Plenary 3 (BALLROOM)

Chair: Dr Denise Marshall

Provocations on privilege in palliative care: Are we meeting out core mandate?

Prof. Kelli Stajduhar

While increasingly recognized as a human right, access to palliative care is still not a given. Indeed, access to the services involved, from medical to social to psychological to spiritual, is uneven across the Global North. Even though palliative care as a concept seems to be unanimously supported, that is what it remains: an idea that only becomes reality for fewer than half of the people who might benefit. Those who do benefit from palliative care services tend to also benefit from high socio-economic status and family support, as opposed to those people facing the end-of-life who also face inequities like homelessness, poverty, isolation, racism, and stigma.

The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. In this presentation I will argue that our ongoing desire to legitimize our field to promote “palliative care for all” has led to the creation of “blind spots” that have allowed us to privilege some in need of care, and render ‘others’ invisible. In doing so, we run the risk of dismantling (albeit unintentionally) the very root structure from which palliative care originated.

Designing the compassionate city

Jenny Donovan

For most of us, most of the time, our built and social surroundings frame the experiences that we enjoy, endure or miss out on. This in no small matter. Just like our food diet, our experience diet – our day to day mix of the things we do, see hear, feel, are engaged in, are moved by or stimulated by- plays a critical role in determining our quality of life. A healthy experience diet helps us meet our needs, find a degree of happiness and fulfil our potential. It does this through offering opportunities to engage in our community, be inspired, delighted and have fun. It offers the uplift of smiles and kind words, the esteem of being listened too or your work admired. It provides chances to leave a positive legacy. A healthy, balanced experience diet nurtures physical, cognitive and emotional health, builds resilience and fosters confidence and self-esteem.

An unhealthy experience diet consigns people to lives diminished in quality, leaves potential unfulfilled and hastens decline. 

My research suggests that the poorest, the aged, the very young, the most marginalised and infirm in our community are least well equipped to access or enjoy a healthy experience diet. My personal and professional experience and my research in this field suggest that those in palliative care (and their families), often fit squarely into this disadvantaged category. For many the final stages of their lives is lived out as a slow, inevitable dimming of their flame. A time of increasing dependence and decreasing self-determination, a prelude to death.

So what can be done about this? I am not an expert in palliative care but I hope I can demonstrate how our surroundings can play a part in helping those receiving palliative care, the people around them and those who have dedicated their lives to working in this field. Our surroundings can do this by embedding invitations to participate in life affirming, nurturing behaviours that ensure the final chapter in the story of a person’s life is a time when their flame can shine brightly.

The presentation will redefine what good urban design is. It outlines what we can all do, designers and non-designers alike to create urban places that help all people live meaningful, engaged lives of dignity.

This presentation draws from my books “Designing to Heal” (CSIRO) and “Designing the Compassionate City” (Routledge).

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Workshop: Public Health Palliative Care ethics (Club Room)
1:30 PM13:30

Workshop: Public Health Palliative Care ethics (Club Room)

Assoc. Prof. Klaus Wegleitner and Dr John Rosenberg

PHPC theory and practice involve ambiguities and risks. Against the background of the personal experiences of the workshop participants, our aim is to discuss the ambivalence that lies in the evolution of PHPC through the critical lens of a care ethics perspective.

PHPC has emerged as a field of study and practice following two decades of exploration and evolution. Under its umbrella, many approaches and initiatives have developed, primarily based on:

1) integration of health promotion into palliative care addressing issues of dying, death and bereavement through the lens of the ‘new’ public health;

2) implementation of WHO´s palliative care strategy into national health care policies; and,

3) population-based public health research in EOLC (Dempers & Gott 2017).

The complementarity between civic EOLC, compassionate communities, generalist and specialist palliative care is described by Abel, Kellehear and Karapliagou (2018) as ‘the new essentials’ of palliative care, which considers the social and relational dimensions of care and aspects of social justice.

Palliative care, conceptualised in this way, is an expression of care ethics that focusses attention on the supportive resources of social systems and care relationships, raising fundamental questions about ethical implications of the social organisation of care. Above all, care ethics could help us to sharpen our critical awareness about underlying ambivalence, tacit care knowledge, and the existential and social-political implications of developments in PHPC.

However, we also observe attempts to transform a heterogeneous, often bottom-up PHPC movement into structured, tool-oriented, evaluation-focused programs. These programs run the risk of transferring public health and community development methods to the field of EOLC in a simplified way, possibly reproducing the main problems of mainstream public health strategies:

·       being paternalistic and morally charged;

·       insufficiently addressing aspects of inequalities in care and care work;

·       lack of appreciating existential experiences, local care-wisdom and care cultures

·       emphasis predominantly on the level of rhetoric and appeals, than on the question of an everyday life embedded ethic of caring (Charles Taylor).

To appreciate and make the known ethical issues of PHPC, we will explore the potential of care ethics to remind us of the sources of hospice and palliative care philosophy and the dimensions of its caring culture.


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Performance: Wake (Gladstone Room)
1:30 PM13:30

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.

Location: The Gladstone Room, Upper Level, Fairmont Resort, Leura

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.

BOOKINGS VIA vigilwake@phpci2019.com


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Concurrent Session (Auditorium)
1:30 PM13:30

Concurrent Session (Auditorium)

Chair: Deborah Hitchen-Holmes

a. The 10k Project: A community-centred approach to ageing well

Dr Alison Rahn

A whole of population approach to ageing and dying well and ‘in place’ is a move towards social and collective responsibility for our ageing population. It requires a re-imagination of aged services and communities. For service providers, the challenge is to work with people in respectful partnerships which promote empowerment and wellness. For the community, it means stepping up to the responsibility of including and caring for each other over the whole of the life course. What happens when a community development perspective is applied to residential aged care to bring the community in? While the individual and collective benefits of social networks are well recognised, little is being done to move towards network-centred care for our expanding ageing populations. The goal of the 10K Project, a collaboration between The Groundswell Project, Southern Cross Care and Western Sydney University, was to develop an effective community development model for the aged care sector that could be replicated. It aimed to identify and overcome possible barriers to implementing community development and discover examples of best practice. Methods adopted involved social network mapping, interviews and focus groups before, during and after placement of a community development worker embedded in an aged care facility. Pre-intervention, residents reported feeling lonely and socially isolated and desired more social connection. With the introduction of the community development worker, the tension between the needs of the organisation and the needs of the community became evident. Communication was identified as a central issue. The question then became how to resolve these tensions. This presentation reports on preliminary findings of this project and focuses on identified barriers and opportunities associated with a community development model in residential aged care.

b. Why should I care? Building communities of care for the elderly and dying in the university classroom

Catherine Dhavernas

This presentation will focus on the objectives and impact of a new interdisciplinary course developed through a partnership between St Vincent’s Care, Karuna Hospice Service and Griffith University (Schools of Humanities, Languages and Social Sciences, and School of Medicine). The course is part of a research initiative seeking to develop new and innovative ways to better meet the needs of the elderly and dying. It was created and has worked to provide students in the arts, humanities, social sciences and healthcare disciplines with an opportunity to learn about the reality facing the elderly and dying and to actively contribute to their care. The course raises awareness – particularly in young adults – about the challenges of ageing and end of life; it facilitates open discussions of these challenges, of the successes and shortfalls of current models of care, and serves to identify and develop innovative ways to improve the quality of life and care of the elderly and dying. In the initial part of the course, students undergo intensive training in biography writing and working with vulnerable patients through in-class simulations, role plays and focused group discussions. Each student is then assigned to a long-term/palliative care client and, working closely with them, assists in writing the client biography. Throughout the semester, drawing on assigned readings (fiction, philosophy, specialized articles), films and documentaries, students explore key challenges facing the elderly and dying as well as shortfalls in current socio-cultural approaches to these challenges through discussions and written assignments. At the end of the course, students submit a self-reflection on their experience of the course and biography process. Residents and clients are also interviewed by the research team for feedback on their experience of the biography process.

c. Is digital storytelling a useful method for uncovering the views of people with dementia?

Lisa Williams

In response to rising rates of dementia, governments have instigated policies and programmes that promote community living for people with dementia from diagnosis to death. Yet research and practice remains dominated by professional views. This is a significant gap given that the perspectives of people with dementia are essential for supporting 'dementia friendly' neighbourhood and communities.
The literature argues that creative methods facilitate people with dementia’s ability to define and convey their experience in their own terms. Digital stories are a type of creative method which elicit personal narratives in the form of short videos. Crafting them with people with dementia has already been cited as a useful therapeutic tool. What has not been explored is how they might be effective for investigating other aspects of their experiences.
To investigate the utility and feasibility of digital stories to capture and convey the views of people with dementia as part of a project examining what support they need to live well at home.
Using excerpts from videos co-created with five people with dementia, the presentation will discuss the findings that centre on the adaptation of the digital storytelling method to this cohort. We will also explore the participants’ views on the co-creation process and the role of the participants’ family members in the research.
Digital stories offer a means for foregrounding the views of people with dementia. By doing so they serve as a valuable tool for crafting support centred on a compassionate communities approach.

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Concurrent Session (Ballroom)
1:30 PM13:30

Concurrent Session (Ballroom)

Chair: Kathy Kortes-Miller

a. How a structured health diary can improve symptom management and communication

Katie Durbin

Background: Palliative care aims to care for the whole person by helping to manage physical, emotional, social and spiritual needs. By doing this it aims to acknowledge each person’s uniqueness. For this to truly exist the patients voice needs to be heard and respected.
Aims/Purpose: To explore if the practice of palliative care patients keeping a structured health diary can improve their symptom management. This study examined if this practice can increase patient’s symptom and disease insight leading to improved symptom and intervention management and improve communication between patients and health professionals.
Design/Method: A qualitative approach was used with evaluation methodology. Six palliative care patients kept a structured health diary for six weeks. They shared the diary with all health professionals involved in their care. Once the six-week period had ended all patients took part in a face to face semi-structured interview. Nine health professionals who had had contact with the patient’s participants were contacted and took part in a face to face semi-structured interview.
Narrative thematic analysis took place and themes which linked participants experiences were identified.

Results/Findings: Seven themes were identified, 1. Supports awareness and understanding of symptoms and disease, 2. Increased awareness of holistic care, 3. Improves identification and accuracy of symptom reporting, 4. Supports autonomous care, 5. Improves family’s insight into patient’s illness and symptoms, 6. Improves continuity of care, 7. Improves quality of interactions between patient and health professionals.

Conclusions and Application to PHPC: There is limited research on the use of structured diaries in palliative care. This is the first study in New Zealand. The positive results show that structured diary use has a strong place in palliative care globally. These research findings also show that diary use fits well into the compassionate communities’ model of a public health approach to palliative care.

b. Family carers’ behaviours and related determinants regarding palliative care initiation: A qualitative interview study with family carers

Kim Beernaert

Title: Family carers’ behaviours and related determinants regarding palliative care initiation: a qualitative interview study with family carers
Background. Most research on initiation of palliative care focuses on health care services and professional carers. However, also family carers can play a role in initiating palliative care for seriously ill persons with whom they have close relationships.
Aim. To identify behaviours of family carers regarding the initiation of palliative care for their seriously ill person and the determinants of these behaviours.
Methods. A qualitative study using semi-structured face to face interviews with 16 family carers of deceased persons who received palliative care was conducted. Thematic content analysis was used to identify groups of behaviours that influenced palliative care initiation and related determinants. The behavioural determinants were fitted in concepts of behavioural theories (eg ‘attitude’ of the Theory of Planned Behaviour). A behavioural model was developed.
Results. Most reported behaviours regarding palliative care initiation were related to communicating with the seriously ill person, other family members and professional carers; seeking for information and supporting the seriously ill person with processing information from professional carers; and organizing and coordinating care. Determinants both facilitating and hindering these behaviours included awareness (eg of poor health); knowledge (eg about palliative care); attitude (eg negative connotation of palliative care); social influence (eg important others’ opinion about palliative care) etc..
Conclusion. This study identified relevant family carers’ behaviours and related determinants such as attitude and knowledge that can contribute to palliative care initiation. As these determinants are modifiable, the palliative care behavioural model that resulted from this study can serve as a basis for behavioral interventions to promote timely palliative care initiation.

c. Seldom heard voices

Manjula Patel

Research Question: What are the understandings and experiences of people at end of life and their families of a Compassionate Community approach?

Methodology: A qualitative multi-site case study examined three contrasting examples of the development of Compassionate Communities approach to end of life care; each site had different socio-demographic profiles and end of life care services. This presentation focuses on the experiences of patients and their families.

Data Collection: The main methods of data collection were interviews and focus groups with 8 patients, 4 primary family carers, 3 members of family/friends, 19 volunteers and 23 professionals that explored their experiences of care and support.

Data Analysis: Analysis of the lived experience was Interpretative Phenomenology Analysis, supported by NVivo 10 for data management. The analysis drew on the interview data plus patient diaries and mapping of the care network of people being cared for, plus their family members, friends and volunteers, and professionals.

The analysis allowed the exploration of the ways families, friends, volunteers and professionals supported people at end of life. The analysis presented here explores this from the perspective of those being cared for and their informal carers.

Findings: The degree of formal and informal support and care, varied depending on; individual circumstances, preferences, care needs, social support structures, health and social care services available to them either free of charge or with payment. Emotional labour of informal carers was identified as an important theme.

The voices of patients’ and their family members are seldom heard and there were differences with how people at end of life care received formal and informal care and support. Within the stories there were highlights of how Compassionate Communities approaches in different ways had extended formal care and blurred the boundaries between formal and informal care.

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Workshop: Knowledge exchange, sustainability and innovation: Examples from DoBra research program
1:30 PM13:30

Workshop: Knowledge exchange, sustainability and innovation: Examples from DoBra research program

Prof. Carol Tishelman

In the Swedish transdisciplinary DöBra Research Program, we strive to catalyze change processes, rather than control them. This poses challenges in comparison to many research paradigms, where control is often a central feature, and findings often disseminated primarily through scientific publication. Using action research in various ways, in partnership with a diverse range of collaborators and stakeholders we work instead with knowledge exchange rather than unidirectional dissemination, and seek innovative means of working toward sustainable and constructive change.

Aims and Interactivity
This workshop draws on findings from four different projects in the DöBra Research Program combined with interactive experiences, to consider ways in which research might catalyze sustainable change processes. Focusing on the innovative approaches we have used for knowledge exchange we will integrate participatory activities with short research-based presentations. Participants will be invited to engage with tools and methods we have developed and used, e.g. toolkits, DöBra cards, and films to stimulate reflection and discussion. We will also simulate an interactive event for knowledge exchange with participants, e.g. a ‘hand festival’. These joint interactive experiences aim to create an environment for experiential learning and discussion throughout the workshop.

Learning Outcomes
Joint learning will include:
• Exchange of ideas/experiences about how to work to achieve sustainable change in innovative manners
• Consideration of benefits and challenges in developing research-based social innovations which can be scaled up for
broader use
• Experiencing use of different media for knowledge exchange and critically discussing their application

Conclusions and Applications to PHPC
In line with PHPC goals, this workshop aims to stimulate discussion and further develop knowledge around the potential role of research in catalyzing sustainable change processes in society. By sharing and generating critical conversations about our work, we hope to contribute to this.

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Concurrent Session (Evans Room)
1:30 PM13:30

Concurrent Session (Evans Room)

Chair: Claire Hepper

a. The development of an instrument to assess diversity responsiveness of research and intervention projects in palliative care

Marieke Torensma

The development of an instrument to assess diversity responsiveness of research and intervention projects in palliative care.

Background: The aging of migrant populations across Europe calls for consideration of their particular needs in palliative care service provision. Studies have shown lower use of palliative care services and higher levels of dissatisfaction with these services amongst older migrants. Migrant patients are furthermore underrepresented in palliative care research, posing drawbacks like the inability to check appropriateness of care innovations.

Aims/purpose: One way to realize responsive palliative care is to address responsiveness in research and intervention projects aiming to improve palliative care. We developed and tested a self-assessment instrument meant to help researchers increase diversity responsiveness of their projects.

Design/approach: We modified the standards for equity in health care for migrants and other vulnerable groups to fit palliative care research and intervention projects. Using consensus method we established a list of twenty-five measures for diversity responsiveness, structured according to different project stages. We pilot tested the instrument in seven research and intervention projects. We observed the self-assessment and interviewed the researchers about the use of the instrument. Transcripts were analyzed using a framework approach.

Results/findings: The use of our instrument raised awareness about the diversity of palliative care patients. It offered a structured way to think about a project’s responsiveness and formulate actions for improvement, e.g. consulting migrant patient representatives about study results. When self-assessment was performed with the project team actions were formulated most effectively. Timely use of the instrument was considered essential for the self-assessment to meaningfully contribute to projects’ diversity responsiveness.

Conclusion and application to PHPC: Our self-assessment instrument helps researchers in palliative care reflect and improve on diversity responsiveness of their research and intervention projects. It thereby helps to engage underrepresented populations in palliative care research and intervention studies to ultimately improve access and quality of palliative care.

b. Hospices working closer together - collaborating as our own unique community

Sharon Hudson

UK Hospices are increasingly becoming involved in the Community Engagement and Development arena and have appointed roles to facilitate this work. The Midlands Region had an established group of workers who were already sharing expertise and experience and established this more formally as a Midlands Regional Hospice Community Engagement Network. Our roles are diverse, sitting in different areas of Hospice but often with the same core values and challenges.
The aim of the network is to develop and share the ways in which we work with Communities to enable a public health approach to death dying and bereavement. Often focused on diverse communities, engagement gives those with no previous contact to hospice services, or regarded as seldom heard, a voice that builds community capacity around death and dying, prompting new proposals shared and supported across the community network
The roles are often isolated and the network gives us an opportunity to support each other and share good practice, bridging the space between Communities and Hospice, breaking down barriers and creating new and diverse opportunities to be a part of our Communities.
We have held two National Conferences- using Arts to enable a Community approach and exploring Public Health and Community Development Approaches and have presented at Hospice UK National Conference
In practical ways we share the lead of each of our quarterly meetings and use WhatsApp and Twitter to communicate and share outside of our meetings
Our shared learning, which involves visiting experts, communities and researchers has led to work with People Experiencing Homelessness, Bereavement Hubs, working with Muslim Communities and more!
We have a shared float at Birmingham Pride this year as the Network has contributed to Hospices working closer together – collaborating as our own unique Community.

c. Hear my voice! A collaborative approach engaging and enabling people with learning disabilities to develop inclusive palliative and end-of-life care

Gemma Allen


People with a learning disability (LD) are three times more likely to die at a younger age than the overall population (Heslop, Blair, Fleming, et al., 2013). Furthermore, they may experience inadequate end of life care through providers not recognising or considering individual needs (Care Quality Commission, 2016).
LD champions were appointed, to examine how we support more people in the community from this marginalised group.

Aim: Engage with and increase accessibility for people with LD to receive coordinated, personalised, end of life care.
Identify gaps in knowledge of hospice staff.

Hospice peer review conducted by LD self-advocacy group. Opinions of LD providers and professionals canvassed. Presentations delivered through community engagement emphasising objectives.

• Information pack produced for hospice staff and volunteers. End of life care education scheduled for LD professionals.
• Easy– read literature review, funds granted to adapt hospice information.
• Accessible advanced care plan developed
• 24 LD care home staff accessed ‘Palliative Care Champions’ training.
• Interactive Dying Matters event for people with profound, multiple LD.
• Staff trained in Makaton.
• University partnership creating diversity/inclusion initiatives and research proposals.
• Development of regional LD palliative care network involving health care professionals, carers, people with learning disabilities and advocacy groups.
• Hospice and all retail stores awarded ‘Safe Places.’
• Mobile sensory room at hospice

Feedback from people with learning disabilities:
‘…they are true learning disability champions, passionate and committed to getting the service right for everyone.’
‘The hospice is already a friendly place and I can see it getting more disability friendly.’

Conclusion: The project has addressed inequalities from this marginalised group’s experience. The programme is ongoing, ensuring people with a LD receive fair, accessible, inclusive end of life care, now and in the future.

d. Die Laughing

Carolyn Mandersloot

Carolyn Mandersloot's comedy is like having a good biscuit and a cup of tea with your hilarious best friend. Only better. She weaves together a narrative exploring the grand complexities and challenges of the human experience- birth, life, death and parenting teenagers. Carolyn draws her experience of palliative care nursing to deftly hold a compassionate space in which audiences can laugh at the both the unthinkable and the undeniable. Carolyn gives us a whole hearted opportunity to swallow a heaping dose of laughter as the best medicine in the contemplation of our own mortality. Carolyn has performed nationally and will bring her aspects of her show to the audience offering a lightness to the conversation of death and dying.

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Care after death: Bereavement (Bligh/Phillip)
1:30 PM13:30

Care after death: Bereavement (Bligh/Phillip)

Dr Dianne Ball and Ray Wells

Care after death requires broad expertise and collaboration to understand and manage the complexities of each death accurately, appropriately and in a timely manner. With ever-so growing constraints on our health systems, it is also an area most likely to be under-resourced. Within health care settings where the loss of a patient affects many different people, it becomes crucial that the needs of the deceased patient, staff, hospital and external agencies are well understood and met.

Bereavement Care Service (BCS) was established in 1995 and contracted to Middlemore Hospital in response to a need to provide specialized, coordinated and culturally appropriate support to grieving families. BCS is a 24/7 onsite service attending every death including second-trimester miscarriages, stillbirth and neonatal deaths. Its specialized and empathetic team provide expertise, understanding, and facilitation throughout all the necessary processes, from the pre-death interface with families until the transfer of the deceased from the facility. It ensures all requirements pertaining to death are met in a compassionate, culturally appropriate, and timely manner. Accurate information enables efficient transfers of the deceased, and for families to continue with their farewell journey.

A range of outcomes are hypothesized- timely accurate information with appropriate cultural support provide greater family satisfaction and reduced risk of complicated grief. There is also benefit to staff, facility and external agencies while preserving dignity of the deceased.

Care in hospital does not have to stop at death even in the face of adversities. It is often the constraints we operate within that open channels of creativity and innovative models of service delivery. BCS is one such model that can easily be set up in most health care facilities. It is a collaborative, centralized and integrated end to end solution that also meets the cultural/spiritual needs of the deceased patients and their families.

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

Concurrent Session (Norman Lindsay)

Chair: Jenny Jones

a. The moments we meet: Lived experiences of rapport for nurses, patients and families in palliative care

Wendy English

Background: Nurses are charged with making rapport and connection with every patient, every shift, every day. Rapport and relationship are considered foundational to palliative nursing with its focus on the patient and their family. Yet the meaning and understanding of this rapport has received little research attention in palliative care.

Aim: To describe the lived experience of rapport and connection with nurses, patients and their families in palliative care.
Design/Approach: This is a phenomenology study informed by Max van Manen’s approach to research. Twelve in-depth interviews with nurses, patients and families were transcribed and thematically analysed and interpreted.

Results/Findings: In-depth descriptions of rapport and connection come under two main themes of “Being Connected” and “Being Disconnected”. Being connected has sub-themes of connection to self and connection to other. While being disconnected has sub-themes of disconnection from self or disconnection from other. Links are made with rapport and nursing care, and rapport and the concepts of between-ness and separate-ness.

Conclusions and application to PHPC: Rapport is important and gives meaning and fulfillment in palliative care nursing. There are different levels of care given, related to the quality of connection created. Rapport and connection are linked to holistic care. An absence of rapport is linked to holistic care being unlikely. Rapport is the preferred way of connecting for all participants and a lack of rapport was considered unsafe and uncomfortable. There are implications for practice relating to kindness, safety and belittlement and rethinking rapport. This study has potential implications for all nursing where the nurse-patient-family relationships are a cornerstone of care.

b. Building community capacity: Supporting students to understand bereavement

Ian Leech

A compassionate community approach to public health end of life care encourages communities to be resilient and enabled to support people and their families who are dying or have been bereaved (Kellehear, 2005). Recognising that locally there was no opportunity for students to gain confidence and an understanding of bereavement, we partnered with schools and colleges to develop workshops and peer mentor sessions, enabling students to support each other in school and their wider social circles.

Through delivery of a workshop to
• enable students to have a basic understanding of the effects of bereavement
• enable students to understand the importance of their own wellbeing
• improve the knowledge of tutor’s and how grief affects people, thus helping identification of bereaved students
• evaluate these sessions from a student, tutor and facilitator perspective

• relationships were made with schools and colleges, delivery content discussed
• facilitators were arranged for each session, using staff and volunteers
• we ensured tutors were aware that any student who became emotional could step outside and someone would follow to check on their wellbeing
• evaluation from the students was gathered collecting narrative during the session and a post-it note evaluation at the end

• Whilst some students found the subject matter difficult, all engaged. The feedback received reflected a wide range of thoughts and emotions which included indicators of increased resilience
• The sessions facilitated conversations and highlighted students whose grief was unknown to others
• The workshop was valued by the tutors
• The sessions have strengthened relationships between the hospice and the schools and colleges
• Further sessions have been requested

Working in partnership with schools and colleges is a positive way to equip young people with the basic skills to support bereaved people and is essential if we are to continue our commitment to create compassionate communities

c. Putting your nurse face on: How nurses manage their own grief after the death of a patient within the clinical setting

Nikki Meller

Introduction - Current literature explores nurse’s grief experiences in palliative care, paediatric nursing or oncology settings, but to date, there is limited research identifying or exploring grief experiences of nurses working in other clinical areas in a hospital setting after the death of a patient in their care.
Objectives – The purpose of this study is to understand how nurses working in acute hospital settings experience grief after the death of a patient in their care, and how they manage their grief within the context of the workplace.
Approach – A constructivist grounded theory methodology is being used for this study. This presentation presents the emerging category of “Putting your nurse face on”. This category explores how nurses manage their clinical practice whilst grappling with the emotional toll of dealing with a patient death.
Practice Implications – The findings may present an opportunity for changes in best practice and individual self-care strategies for nurses who may be grieving after the death of a patient.
Conclusions - When a patient has died nurses cope with the intensity of these emotive clinical situations by putting their nurse face on. This is a temporary state of being. Nurses reframe their thinking becoming task focused and clinically practical at the time of a patient death, describing acts of emotional control to suppress their grief reactions.

d. Shifting the culture of academic Palliative care with PHPC: our teaching imperative!

Dr Denise Marshall

In 2013, a year long sabbatical from an academic Division of Palliative Care at a major Health Sciences University in Canada provided an opportunity for a mid career faculty member to explore the emerging international movement whose focus is attending to Palliative Care as a public health issue. During this time, the faculty member was able to dive deeply into the literature, seek mentorship from founding architects of the health promoting palliative care movement and attend international meetings. Prior to this year, little formal application of the PHPC approach was evident in Canada either at the academic level or at the community level. Knowledge translation from this sabbatical was expected as the key output from this protected academic time.

The purpose of this oral presentation is to outline the process of knowledge translation post sabbatical and describe the known impacts on both the academic community in Canada and in the communities served by the academies

This presentation will be descriptive- outlining the organizational approach taken to KT of the PHPC approach in Canada at an academic institution.Approaches to academic mission, faculty projects, faculty roles and leadership will be detailed.

The sabbatical focus and subsequent KT through an academic Division of Palliative care has had wide and far reaching impact on individual academic careers and culture, as well as community partners and institutions. These impacts will be highlighted .

Conclusion/application to PHPC
The decision of an academic department in a health sciences university to support this sabbatical focus proved to itself be an effective ecological strategy to help undertake a culture shift towards a Public health Palliative Care approach .

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Concurrent Session (Oxley Room)
1:30 PM13:30

Concurrent Session (Oxley Room)

Chair: Toni Bradley

a. With your basket and my basket the people will thrive

Viviana Fon

Nāku te rourou, nāu te rourou, ka ora ai te iwi.
(With your basket and my basket the people will thrive.)
Enhancing social connectedness to promote whānau (family) and community resilience in bereavement.

Most people successfully integrate loss into their lives with support of family and their informal networks. Moeke–Maxwell et al (2014) highlights whānau resiliency around end of life issues is sustained through cultural values, connection and reciprocity. A compassionate community approach focuses on growing capacity within the wider community to respond effectively to loss, grief and bereavement. Some groups, such as children and Māori and Pasifika, can experience significant barriers to accessing support. A key starting point to enhancing community resilience and compassion is asking: “Whose voices are not being heard?”
This presentation will explore the interweaving of community, hospice and key partners, through culturally relevant and accessible bereavement support initiatives aimed at increasing resiliency of children and extended family. Activities incorporating creative memory keeping and tree planting provided opportunities for strengthening intergenerational sharing and informal community networks.

Outcomes included:
• Facilitating accessible, community based, and culturally relevant healing spaces.
• Increased resiliency for children and growing capacity within whānau and community.
• The emergence of self-sustaining support networks.
• Listening to families and observing ‘gaps’ as opportunities for innovation.
• Strengthening hospice collaboration and partnership with key providers to create service sustainability.
• Nurturing connections, with greater understanding of our community and future service directions.

Attendees may reflect on cultural health literacy, intergenerational and community resources to promote a compassionate community response to loss, grief and bereavement.

b. Understanding the impact of sibling death as a child living in the family home

Dr Amy Funk

Background and Aims
The death of a child has important implications for surviving siblings. Sibling death has been referred to as “double loss” because the sibling relationship has been lost and the parental relationship is disrupted. Sibling grief has been linked to poor physical and mental health outcomes. Child grievers are at a particular disadvantage to understand and cope with death. Sibling grief has been identified as an under researched loss, with significant gaps in need of future study.

Aim 1: Identify the shared themes in this type of sibling bereavement.
Aim 2: Identify the impact of this type of sibling death on the surviving sibling and family.
Aim 3: Identify any supports that helped child grievers to process the death.

A subset of data will be analyzed from my original study on sibling grief, based on 27 interviews with sibling grievers, aged 3-61 years at the time of sibling death. This proposed secondary analysis will focus on subset data from siblings who were children living in the family home at the time of sibling death (seven participants). The study will use the qualitative paradigm of phenomenology to guide the research design and data analysis.

This data analysis will be concluded and findings developed by September of 2019 and prepared for dissemination at PHPCI 2019. The presentation will include themes of this lived experience, with a focus on the impact of the child and family and positive supports that helped with the grieving process.

This presentation will shed light on this neglected grief experience. The application goals for this oral presentation are to enhance an understanding of the experience of child sibling grief, the impact of the loss on the child and family, and stimulate discussion on positive supports for child sibling grievers.

c. Is there a role for the funeral service provider in bereavement support within the context of Compassionate Communities?

Prof. Samar Aoun

Background: This study is the first to offer the perspectives of bereaved individuals in the context of funeral service consumption, with the aim to improve community based bereavement support in Australia and elsewhere.

Approach: A national postal survey was conducted with 839 next of kins who were bereaved 6-24 months before the survey, facilitated by six funeral service providers in four Australian states.

Objectives: To examine bereaved individuals’ experiences with funeral service providers; to understand the most and least helpful aspects of their service interactions; and to identify if funeral service providers have a role to play in bereavement support.

Findings: Funeral service providers were reported to be the third most accessed form of bereavement support after friends and family. Analyses revealed six major themes related to perceived helpfulness including instrumental support, professionalism, informational support, financial tension, communication and emotional support. Respondents’ suggestions for funeral service providers to improve their support of the bereaved included adopting a proactive approach to bereavement needs and offering personalised and ongoing support.

Conclusions: Funeral service providers have a role to play in bereavement support as one of the community-based assets proposed by the Public Health Model for Bereavement Support and for building community capacity around death, dying and bereavement as proposed by the Compassionate Communities Concept. Re-framing the role of the funeral industry within such international movements may help it to adequately respond to market and cultural changes that have affected the role of this industry.

d. Compassionate Ottawa: Volunteers are mobilizing a social movement for community caring

Dr Mary Lou Kelley

Background: This presentation shares the experience of Compassionate Ottawa (CO), launched in 2016. Dynamic volunteers are working towards making Ottawa a compassionate community following the Compassionate City Charter (Kellehear). CO is mobilizing an innovative, community-driven approach collaboratively with the health system to improve quality of life for people living with frailty and end-of- life issues.

Aims: To be a leader in building a social model of care across Ottawa to help individuals, their families, friends and caregivers as they deal with dying, death and grieving. Priorities are raising awareness (workshops and public presentations); engaging and empowering citizens and community partners; and facilitating education and training of CO volunteers and citizens.

Actions: Partnerships have been forged with seniors’ groups, faith groups, schools, workplaces, health and social care organizations and palliative care groups. Initiatives are: facilitating community conversations fostering death literacy and advance care planning; engaging schools, workplaces and faith groups to provide social support with dying, death and grieving; inspiring and supporting grass roots initiatives; and facilitating education and training for volunteers and citizens. Volunteer teams deliver initiatives and community interest is very strong.

Outcomes: Multiple community programs have been offered. CO created a logic model, communication and evaluation plans, established credibility with health system partners and established needed infrastructure (website, part time administrative staff) with financial support from donations and funding proposals. CO is legally incorporated as a non-profit organization.

Conclusions and application to PHPC: Compassionate Ottawa’s approach offers a unique model for a successful, volunteer and community-driven approach to mobilize social change. The presentation provides an overview of CO’s development process, current structure, initiatives, programs, and short-term outcomes. CO’s work is now respected and supported by health professionals. Participants can use this information to inspire and guide their own efforts to develop a public health approach to palliative care.

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Workshop: Building Compassionate Neighbours Models: Our journey to upscale so far (Macquarie Room)
1:30 PM13:30

Workshop: Building Compassionate Neighbours Models: Our journey to upscale so far (Macquarie Room)

Dr Heather Richardson

Background and Aims

In 2014 St Joseph’s Hospice set up Compassionate Neighbours (CN), to create meaningful connections at the end of life for all. Built on foundations of community development principles with a public health approach, we worked deeply with the community, to create an approach where CNs build true friendships with community members, but also going on a transformative personal journey of change in their own perceptions of death, dying and loss, and challenging and reshaping the practices of professionals.

In 2016, STJH, in partnership with St Christopher’s Hospice, embarked on a journey to replicate and scale up the approach. A national innovation foundation, Nesta, provided funding and support to replicate CN hosted by 7 hospices in London. Together, we established a scaling strategy, theory of change, a collaborative approach to support project leads in adopter hospices, and learned through reflection and formal evaluation.


Participants will have an opportunity to understand how the scaling approach was designed and delivered, the challenges and opportunities experienced and key learning on the part of the many different stakeholders, including hospice, communities and neighbours.

Learning Outcomes

• Greater understanding of CN, and lessons from scaling a community based approach.
• Details of what has been achieved in journey towards scaling a community rooted, institutionally hosted enactment of compassionate cities.
• New understanding regarding the practical challenges associated with scaling innovation.
• Ideas about how to scale other projects based on this learning and approach.

Results, conclusions, and applications to PHPC

There is real interest to replicate programmes such as CN but scaling requires strong conceptual understanding of how the programme works, clarity about what must be retained as core, and where local flexibility and tailoring is appropriate. Flexible and reflective leadership, along with strong partnerships are key to success. Upfront investment and sustained involvement of key players is essential.

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Concurrent sessions (Auditorium)
11:00 AM11:00

Concurrent sessions (Auditorium)

a. Decisions, dying and death with dementia

Joanne Roseman

What is new or innovative about your approach?
This presentation is a first-hand experience of supporting someone who has aged, with a diagnosis of dementia living and dying in an aged care facility. The use of story, images and the soundtrack of my father’s life, provides a powerful insight into what it is like to care for someone as they die as a result of dementia. The presentation advocates there’s much more to dying than having an advance care plan and deciding not to treat is not for the faint of heart. It also promotes other ways of caring for and acknowledging death in an aged care facility as opposed to hiding behind closed doors or curtains of silence. It speaks of not rushing to get the body out and the grace and care of the staff. It acknowledges the impact of poor palliative care in aged care.
How does this integrate the current discourse in PHPC/Compassionate Communities?
Advocating for the aged and vulnerable and supporting those in the community to make informed decisions about their care and how they die. Encouraging conversations around care planning and decisions making as well as promoting holistic end of life care.
How will your artistic practice expand the discourse between arts and health?
If we are to truly support the vulnerable, aged dying we must be willing to take risks ourselves. Being informed of what dying and caring for the dead entails in aged care, but accentuating the life too in aged care. The more people are aware of what may come, the more they may be able to open up discussions with their families and their health care providers and challenge the status quo. It will reflect the need for palliative care in aged care. We are far more than KPIs.

b. The last waltz

Rose Sexton

This presentation with be a collection of scenes from the play with expository narration, to give the attendants a taste of this exploration of issues around Advance Care Planning, death and dying, and family dynamics in this space.


Vera, hooked up to machines in an ICU, steps “outside” of her body to chat directly to the audience. Her family surrounds her, but she is unable to communicate. She reminisces with the audience about her life, her family, and her expressed wish that she be allowed to die at home. After falling ill, she was brought to hospital, and there she has stayed; caught between living and dying. Her daughter in law, Elizabeth, takes to the stage to reflect on her relationship with Vera over the past 20 years, and comes to the decision to honour Vera’s wishes. Has she left it too late?



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Concurrent Session (Ballroom)
11:00 AM11:00

Concurrent Session (Ballroom)

Chair: Helen Callanan

a. Addressing death illiteracy: Findings from the evalution of a death and grief eduction programme for children

Sally Paul

Background: The function of education in developing health, and death, literacy, is as a key tool in health promotion. In Scotland, schools are identified as an important target for health promoting palliative care to ensure that children develop the skills and capacity to talk about, and cope with death and bereavement; yet, death is not included in the curriculum and teaching about death and grief is not common practice. Aims: This presentation discusses the evaluation of a death and grief education programme for children, aged 9 to 12, in one Scottish school. The programme was designed as part of an action research study, in response to children’s questions about death, which they, and school staff, determined the school had a role in answering. Written evaluations, focus groups and interviews were facilitated with children and teachers post teaching to: understand experiences of the programme, identify key areas of learning; and ascertain opportunities and challenges for integrating death and grief into the curriculum. Findings: The evaluation revealed that despite initial reticence, staff enjoyed teaching the programme and were surprised by how readily the children engaged with the learning. Likewise, the children revealed that it was usual to talk about death in class yet they enjoyed the programme and described how it supported them to share personal stories and develop their understanding of organ donation, funeral customs and grief. Conclusion and application to PHPC: The research suggests that a short and targeted education programme, led by the questions of children, can develop knowledge of death and grief and that this impacts on children’s ability to understand and engage with these experiences: thus building death literacy. This is significant as, whilst the experience of caring, dying, death and grief impacts on everyone, children’s experiences of and relationship to health promoting palliative care remains under-explored.

b. Developing the Death Literacy Index: Early findings from practice examples in Australia

Dr Kerrie Noonan

Background Despite growth in public health approaches to palliative care, there is limited research demonstrating its impact. In particular, how community development programs may contribute to transforming current service dominant approaches to end of life care. The death literacy index (DLI) is being developed to address this gap. We define Death Literacy as knowledge about, and understanding of the death system to strengthen community capacity to take action on caring at end of life. Aims 1.To develop a rigorous, comprehensive, useful and generalizable DLI; 2.As a tool to measure the impact of interventions; and 3.Determine the state of death literacy in Australia Methods 1)Extensive qualitative research had been conducted with carers, communities, and service providers across Australia 2)Focus groups and interviews with national and international experts were conducted to develop DLI items. 3)A representative sample of Australian adults completed an online survey. Exploratory and confirmatory factor analyses, structural equation modelling and regression analyses were used to identify the DLI and its relationship to demographic variables and people's previous experience with death, dying and bereavement. Results The analysis showed that death literacy has conceptual validity. That is, it can be reasonably measured. The snapshot of Australians death literacy challenged some assumptions regarding how people learn about death and dying and how many people are able and willing to contribute to caring for people at end of life. These have implications on the development of social interventions and programs we will further discuss these in this paper. Conclusion The death literacy index is a promising development in our understanding of community knowledge and know-how related to dying, death and loss. The DLI can provide baseline measurements for assessing change and cross cultural understandings of death literacy.

c. Developing a Death Literacy Index

Rosemary Leonard

Death Literacy forms part of the new public health framework in which citizens are central to decision-making about, and access to, end of life and death care options. Death literacy is knowledge and understanding of the death system. The resulting skills strengthen individual and community capacity to take action and care for one another at times of dying, death, loss and grief. In this way, it contributes to compassionate communities. The present research aimed to develop a rigorous, comprehensive, and generalizable death literacy index in such a manner that it can be used to measure the impact of interventions to increase death literacy. It used a mixed method approach with qualitative methods for content development followed by a national survey and quantitative analyses, including exploratory and confirmatory factor analyses and structural equation modelling. The final Death Literacy Index (DLI) had 29 observed variables and four latent variables (Practical Knowing; Knowledge from Experience; Factual Knowledge; and Community Capacity) and an underlying latent variable “Death Literacy”. The Practical Knowing subscale consisted of two subscales: Talking Support and Hands on Caring. The Community Capacity subscale consisted of two subscales: Accessing Help and Support Groups. All measures had high reliability (Chronbach’s alpha) and validity as demonstrated by their correlations with respondents’ experiences with death, dying, and bereavement. The moderate correlations suggest that the DLI is more than just a measure of people’s experience. As the Knowledge from experience subscale illustrates, people need to learn from their experiences to become death literate. The DLI will have the capability to measure impact due the range of topics covered by the subscales. Because within the Index, each subscale’s reliability is good, they can be used independently to match the appropriate subscale with a particular intervention.

d. Developing death competence online: Is it possible?

Prof. Jennifer Tieman

For many Australians, talking about death and dying is experienced as uncomfortable at best, or offensive at worst. Death can be seen as a medical event, instead of the natural conclusion to every life. As a result, people often avoid discussing death, which may impair their ability to cope and make good decisions when facing their own death or that of a loved one. We designed a Massive Open Online Course called Dying2Learn, aiming to provide a safe space for the general public to learn about and discuss death and dying. The course was constructivist, encouraging participants to collaborate and learn from one another. We investigated whether participating in Dying2Learn could increase participants’ death competence, measured in an optional online survey at the beginning and end of the course so that change over time could be detected. Over the three years that Dying2Learn ran, 529 participants provided death competence data at both time points. Most Dying2Learn participants already demonstrated high death competence at the beginning of the course, perhaps reflecting the significant representation of health professionals (73.9% of all students) or their self-selection into the course. Nonetheless, students reported a further statistically significant increase in death competence, which was of a small to medium size. The high rate of participation by health professionals suggests that this was an attractive activity for this group, serving a need to discuss their social rather than medical experiences of death and dying, which is perhaps not met elsewhere and ultimately improved their capacity to cope with this aspect of their work. Further investigation is needed to determine if the type of discussion fostered by Dying2Learn could be equally beneficial in general community populations with low baseline levels of death competence.

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

Concurrent Session (Oxley Room)

Chair: Jed Jerwood

a. Disenfranchised and disadvantaged: Public health implications of a scoping review of social and structural inequity in bereavement following expected death

Kristin Bindley

Background: An emphasis on individual intervention and psychological complexity has characterised research on bereavement in palliative care contexts. Exploration of social and structural inequities that may contribute to a position of “structural vulnerability” in bereavement has been limited.
Aims/Purpose: This scoping review sought to summarise published research on the impact of social and structural inequities, following expected death.
Design/Approach: Underpinned by frameworks articulated by Arksey and O’Malley (2005) and Levac et al (2010), systematic searches were conducted of four electronic databases. Additional studies were retrieved through hand searching. Eligible studies attended to bereavement experience following the death of an adult due to a life-limiting illness, included consideration of social and structural inequities, and were undertaken in developed countries between 1990 and 2018. A priori and emergent themes were identified through thematic analysis.
Findings: Of 322 records, 62 full text articles were retrieved and 15 papers met inclusion criteria. Studies highlighted unequal social status in bereavement related to sexuality, class, gender, age and ethnicity, with structural inequity experienced in interactions with institutions and social networks. Studies also identified that the experience of bereavement itself may be accompanied by exposure to disenfranchising systems and processes. Structural vulnerability appeared to be associated with outcomes including psychological distress, social isolation and practical issues such as housing insecurity, financial strain, and employment concerns.
Conclusion and application to PHPC: Social and structural inequities potentially contribute to layers of disadvantage following expected death and require further exploration. Findings specifically point to the need for systemic capacity building and responsive social policy regarding death, dying and loss – beyond the domains of formal health care and specialist palliative care – to better support vulnerable, diverse and potentially hidden populations in bereavement.

b. Navigating power dynamics in engaging communities in end-of-life issues: Analysis of the process of developing a community-based intergenerational arts initiative about death and loss as part of the Swedish DoBra Research Program

Mac Kleijberg

Navigating power dynamics in engaging communities in end-of-life issues – analysis of the process of developing a community-based intergenerational arts initiative about death and loss as part of the Swedish DöBra Research Program

Lack of community engagement in end-of-life (EoL) issues and age-segregation in Swedish society motivated us to develop Studio DöBra, a community-based intergenerational arts initiative to support community engagement in EoL issues and develop intergenerational meeting places. A library, an activity center for elderly, an artistic organization for children, and a school were collaborating organizations, with their representatives forming a project group with MK, a doctoral student, to develop Studio DöBra. This consisted of 5 workshops with 8 children and 8 elderly participating together in arts-based activities (e.g. collage, sculpture, games) with themes related to death and loss.

Through reflecting on challenges encountered in developing Studio DöBra, this presentation aims to contribute to a discussion about power dynamics in developing community-based initiatives to support engagement in EoL issues.

Community-based participatory research principles guided Studio DöBra development. Data was generated through documentation of the development process (notes and audio-recordings of planning meetings) and follow-up interviews with project group members. Analysis was an inductive qualitative process.

We found challenges of engaging communities in EoL issues related to two power dynamics: (1) Power dynamics in the project group: these included MK being perceived as having most ownership since he initiated the collaboration. However, community-organizations increased engagement and ownership through investing resources according to professional mandates. (2) Age-related power dynamics: project group members – the ‘adults-in-between’ participating children and elderly in age – had power over these two age-groups which could either enable, or avoid, block, or silence engagement with EoL issues. The manner and extent to which project group members reflected on personal EoL experiences created communicative spaces leading to action and change.

Conclusions and application to PHPC
This presentation illustrates the importance of reflecting on and ways for working with power dynamics in developing community-based initiatives supporting engagement with EoL issues.

c. Do you need a wife to die at home? A systematic review and gendered analysis of research addressing access to preferred location of end-of-life care

Dr Grace Walpole

The role of women as family caregivers at end-of-life is well established. What happens, however, when these women come to require care themselves? We know little of whether women can access family caregiving in the home, a model that has historically been reliant on the physical and emotional labour of women. In this presentation, we will report the findings of our systematic review and gender-based analysis of the literature around access to preferred location of care at end-of-life. Taking a feminist social constructionist perspective, we will explore three themes: (1) women’s preferred location of care at end-of-life and access, (2) who provides family caregiving for those women who do die at home, and (3) the barriers and enablers to women accessing family caregiving at home at end-of-life. The implications of these findings for palliative health service delivery and associated policy will be discussed.

d. Who cares for the dying poor? Developing compassionate inner city communities

Ashley Mollison

Who Cares for the Dying Poor? Developing Compassionate Inner City Communities

Background and aims: Proponents of Compassionate Communities urge the palliative care community to recognize that 95% of dying is non-medical. They advocate a return back to the social aspects of palliative care that are developed, offered, and advanced by members of the public and civil society organizations such schools and churches. What is the way forward for poor and homeless people who are not seen as part of the public and excluded from civil society, whose biological family is estranged, whose caregivers are burdened by inequities, and whose homes are deemed inappropriate for care?

Design/approach: In a 3-year ethnographic study longitudinally following 25 homeless and vulnerably housed people at end-of-life and their service providers we learned that participants faced immense individual, organizational, and structural barriers to specialized palliative care. Service providers in inner city housing/shelter, health, and social service organizations did what they could to meet unmet physical, psychological, and social needs, but oftentimes, palliative care was too little, too late. In this presentation, we draw on interviews and ethnographic observations with inner city service providers and administrators to understand the contexts in which care for the dying happens.

Results/findings: Findings have implications for development of compassionate inner city communities: 1) Workers are filling gaps in the palliative care system, but not being recognized for it; 2) Workers are largely left on their own to address deep grief brought about by unjust and early deaths; and 3) Gaps exist in education, training, and support for palliative and bereavement needs in the inner city community.

Conclusions and application to PHPC: In the movement to bring palliative care back into the community, there is an opportunity to draw attention to injustice and build broader compassion for people living in poverty and homeless. This includes addressing exclusion and marginalization of poor and homeless people, their chosen family, and service providers.

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Concurrent Session (Norman Lindsay)
11:00 AM11:00

Concurrent Session (Norman Lindsay)

Chair: Vanessa Eldridge

a. Newcastle Compassionate Communities: hard hats and hugs

Jeanette Lacey

Early in 2018 a consortium of interested parties from Newcastle submitted an application to be one of eight “Groundbreaker” communities in Australia, under the auspices of The Groundswell Project. This application was successful and the “ComComNewy” group would embark on a journey that includes a community development project and a research component managed by Professor Debbie Horsfall and the University of Western Sydney. The major requirement from our initial application was to hold a public forum in November 2018, that would engage with the local community provide direction to further build and support this work. A world-Café forum for 140 was held and identified:
The need for a directory or service map than can assist people who are sick, carers, dying or bereaved. It can be technology based, but it needs to be available in paper version as many people do not use technology. Advice that health care workers and our community need to understand and start talking more honestly and openly about advance care plans, sickness, death and dying. The participants identified a need a safe place to go to talk about death, dying and bereavement whether it be a café or another space, it needs to feel welcoming and safe – and should be available for the community at least once a month – it needs to be well advertised. Overall the community feels satisfied with palliative care services at our major hospitals and felt that we can all build our own communities to better support each other. People need to feel heard and need to share their story.
The initial response to the forum was to establish the bereavement café, a dying to know talking series in conjunction with a cemetery and historical society and scoping for a website and directory. An update and evaluation can be shared at conference with lessons learned.

b. Taking it to the streets

Terry Ayling

Background: In the past conversations about death and dying and rituals surrounding them often took place in religious and faith communities, or within extended families and friendship networks. With the demise of many religious and faith communities and the breakdown of many marriages and family life, opportunities (and skilling) for these conversations and rituals have also diminished. With increasing pressures on health services, it has never been more important to facilitate partnerships between acute & primary health settings and, as part of this to reanimate the connection/role of religious and faith communities, as well as to provide new opportunities (people and places) for conversations about death, dying and bereavement support, to take place in an increasingly secular setting.

Aim/Actions: Our Aim is to develop a model by which we will initially recruit, train and supervise 100 'compassionate listeners' to serve in ten (10) community spaces across the City of the Gold Coast to provide free, non-judgemental listening and support to people who wish to talk about death and dying, or those experiencing grief. In so doing, we also will seek to reanimate links with religious and faith communities around these issues, to broker better referral pathways from acute to primary settings (including with values based residential aged care provides) and to explore a range of 'safe places' for these conversations to take place.

As we are currently developing this model, and plan to implement it mid-2019, we don't currently have any findings, but we are hoping that by the time of the Presentation we will have a story to tell.

Whilst the impetus for this initiative has come out of the public health, palliative care, hospice space, it is connected to a more broad-based strategy for reanimating communities within the aspiration of the Charter for Compassion - Compassion Cities initiative, which is a multi-sectorial approach to creating compassionate cities, very much in line with the aspirations and values of PHPC and Compassionate Communities Network in Australia, and connects with a range of initiatives being trialled across the country. It is hoped that, in this presentation, we will be able to identify the points of connection and differentiation in this shared vision and work.

c. Our Compassionate Community, developing networks of care with willing villagers and primary health providers

Niki Read

In 2018, the Nepean Blue Mountains Primary Health Network, The GroundSwell Project and Western Sydney University came together to address local issues regarding end of life care and planning. Recognising that end of life conversations need to happen well before times of crisis the resulting project, ‘Our Compassionate Community’ Blue Mountains has four aims:
1. To develop and implement compassionate communities in a primary health care setting,
2. To build networks that support and dignify a person’s dying and death,
3. To improve the death literacy of the general community including in General Practice and
4. To strengthen pathways between the civic community and health professionals.

The project is in its second year of practice and is led by a community development worker. In year one we built connections and rallied passionate people within the community, including across the health sector. Currently we are establishing the role of a Health Connector in a General Practice to further build bridges between primary healthcare providers, community organisations, individuals and their friends, family, workplaces, neighbourhoods etc. The Health Connector is working closely with a team of local community connectors mobilised in order to further develop networks of care. Results of the Death Literacy Index, will provide fundamental information to support the project aims and the work of the health connector specifically.

In this paper we will discuss the barriers and opportunities encountered along the way in addition to highlighting the potential of such a community centred approach. We hope that implementing a compassionate community approach in such a way, will enable us to highlight what works and where the challenges lie in bringing this program, developed in the UK, to Australia. The findings could be useful for other Australian communities wishing to establish similar models, at the same time as further strengthening community action and networks of support locally.

d. Better than Sex: Participating in the Tasmanian Care Beyond Cure program

Dr. Kitty Vivekandanda and Dr. Mayumi Purvis

Participants’ experiences in Care Beyond Cure program
This paper presents findings from participants in a Compassionate Community in Tasmania called Care Beyond Cure.
How the Care Beyond Cure program has shaped participants’ palliative care journeys was explored.
The qualitative research design involved feedback surveys, semi-structured interviews and focus groups using photo-interviewing.
Participants’ diverse experiences in participating in Care Beyond Cure will be presented through stories, words and images.
Conclusions and applications to PHPC
Choice and control, compassionate care and community connection were most valued by participants.

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Workshop: Plan your funeral playlist first
11:00 AM11:00

Workshop: Plan your funeral playlist first

Dr Annetta Mallon
Background and aims:
Funeral planning is something that far too many of us neglect to undertake, leaving our friends and family to determine what style of send-off we are given. There is a misperception among many community members that a funeral must be sombre, short, lacking in personality or humour, and run according to funeral business dictates. This workshop will allow participants to re-frame how they think about their own funerals, facilitated by a novel and creative approach to planning: begin with the music first. Participants in this workshop will be given the opportunity to plan their own funeral as completely as they like (or to at least map out their preferences for later refinement) in a supportive, inclusive, and non-judgemental environment where everyone will be encouraged to prioritise what their own preferences are in terms of reflecting their lives and passions.

Participants will be given notepads, pens, large pads of paper and coloured markers. During the course of this workshop favourite/beloved songs of any style (or singers) will be identified and participants encouraged to incorporate the songs as the workshop moves through a variety of aspects for the funeral itself – location, timeframe, order of service, etc.

Learning Outcomes:
Participants will learn that planning a funeral can be fun, thought-provoking, representative of their authentic lives and selves, and a process that does not need to be scary or confronting. Hopefully, too, participants will

The take-home messages include gaining a death literacy understanding of how normal funeral planning can be for everyone – at the individual, couple, and family/friend network levels – and how to talk about funeral planning in a matter-of-fact manner. This is useful when friends/family receive terminal diagnoses, and helps facilitate planning in other end of life areas.

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Workshop: Implementing difficult conversations
11:00 AM11:00

Workshop: Implementing difficult conversations

Erica Pitman
Background & Aims:
It is estimated that only 14% of Australians have an advance health care directive, 45% of people die without a will, and around 50% of Australians will not be able to make or express their own decisions when they are near death. Your Life Assist has developed two sets of conversations cards, “Your Life Story” and “Your Life Wishes”, designed specifically to help us all start having difficult conversations about end of life matters. Finding a suitable way to start talking with others about their end of life wishes is usually a challenge for most people. These conversation cards provide an engaging way to kick-start conversations.

This will be an opportunity to experience the use of the conversation cards in an interactive, compassionate, and sometimes challenging way, along with some fun to lighten the atmosphere. Interaction will be one on one, in small groups, and within the larger group. Exploring your own values and beliefs about your end of life wishes and thinking about your life story will assist you with helping others to do the same.

Learning Outcomes:
As a result of attending this workshop you will have new or additional tools to:
• explore your own end of life wishes,
• explore end of life wishes with others,
• think about your own life story and how you would like to express this,
• assist others with expressing their life story,
• a greater level of comfort to implement difficult conversations about death and dying.

End of life is everyone’s business so becoming comfortable with having difficult conversations about death and dying, is something we can all benefit from, whether this is with your own family, your neighbour, a work colleague, friend, client or patient.

Death will come to us all … talking about the inevitable allows us to live fully NOW.

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Workshop: To ally to actually ally: Re-claiming the lived experiences of ageing, dying and grieving (Misty's Room)
11:00 AM11:00

Workshop: To ally to actually ally: Re-claiming the lived experiences of ageing, dying and grieving (Misty's Room)

Presenters: Brett Scholz, Dr Aileen Collier and Alan Bevan

Background and Aims

A public health palliative care (PHPC) approach supports power shifts in favour of patients, families and communities, positioning those living with the experience of life-limiting illness as ‘experts’ in health care planning, organization, delivery and research of dying and grieving. There are no guidelines about how this power shift might be realised. We aim in this workshop to collaboratively interrogate how such a power shift might move from rhetoric to reality.

Drawing on our combined expertise including lived experience of and research into palliative care, this workshop considers issues of paternalism, power and practice in research and organisation of dying and grieving.


Following a discussion of the lived experience of power imbalances in palliative care, participants will have the opportunity to debate and discuss the issue of power. We then present the evidence on power imbalance and introduce the concept of Allyship. Workshop participants will engage in identifying and critiquing exemplars of Allying with consumers.

Participants will be invited to consider how they might engage in Allyship to in their own contexts in small group activities and discussion.

Learning Outcomes

• Critique current approaches to ‘involving’ consumers in planning and delivering of services and conducting research about dying and grieving.
• Describe the power structures at work at macro and micro levels of PHPC.
• Describe the concept of Allyship, the characteristics of Allies and how to best Ally with consumers
• Discuss and identify opportunities and strategies to ‘Actually Ally’ in your own setting and/or community

Conclusion and application to PHPC

There is a growing emphasis on collaborating with consumers. Workshop participants will develop understandings of Allyship in their own contexts. For researchers, this might include how to co-produce research with consumers. In service settings, this might involve critiquing power structures positioning consumer involvement in tokenistic ways.

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Plenary 2 (BALLROOM)
8:45 AM08:45

Plenary 2 (BALLROOM)

Chair: Prof. Merryn Gott

The Circle of Life: An Australian First Nations People Perspective on Life and Death

Susan Moylan-Coombs

We have the knowledge to share if only people listened.

We are the oldest living culture on the planet and we are taught about the meaning of life through our human journey, through ceremony and rights of passage to celebrate our existence.

The circle is sacred: it tells a story about Birth, Life, Death and Afterlife, it tells the story of the journey of our human spirit.

In life and death the narrative of who we are and our place in the world is carried in our own unique life journey blueprint.

We are born with a purpose, a code, that instructs us on our responsibilities and behaviours this lifetime.

The Lore by which we live our life is emeshed in the honouring of the Sacred World, the Human World and the Natural World.

Bird is a new beginning, death allows it to be so. We don’t fear birth, we celebrate it.

So why do we fear death and not celebrate it?

The cycle of life is continuous, the Circle is Sacred.

Digital story telling research methods support the reclamation and retention of indigenious end of life care customs in Aotearoa

Dr Tess Moeke-Maxwell

Many indigenous New Zealanders have retained their traditional end-of-life care customs despite the impact of neo-colonialism, however many have not.  Kaumātua (elders) from the Te Ārai Palliative Care and End of Life Research Group identified the need to conduct an investigation of traditional care customs to share with indigenous families who are in need of this vital cultural information.  Responding to their story-telling traditions, the Pae Herenga study used Kaupapa Māori research (KMR) methods to undertake 61 face-to-face interviews with Māori whānau (families) (including those with a life limiting illness), traditional healers, spiritual practitioners and Māori health professionals.  Three digital story workshops were also conducted producing 16 stories.  Each three minute video provides an example of indigenous values, tikanga (customs) and kawa (protocols) that inform end-of-life care.  A range of care customs were identified, as well as facilitators and barriers to using these within different health care settings.  We found that KMR methods, face-to-face interviews and the employment of digital story-telling workshops, provided a safe and effective way to engage with indigenous people to collect ‘stories’ about their care customs.  Public dissemination via a social media campaign will ensure these cultural traditions are shared with Māori families who need this vital information.

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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.

BOOK TICKETS VIA vigilwake@phpci2019.com


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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:https://www.dropbox.com/sh/y8tkaintzcvltj0/AABBvzLL1mNzBR2GtvUFRqx7a?dl=0

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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