WORKSHOP: Giving sorrow words: Poetry as a gateway to grief literacy
6:30 AM06:30

WORKSHOP: Giving sorrow words: Poetry as a gateway to grief literacy

Elham Day


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

Later Event: October 15

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

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7:15 AM07:15


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

A note from Rachel Hore.

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

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

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


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

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

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

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

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Plenary 6
9:00 AM09:00

Plenary 6

Chair: Dr John Rosenberg

Exploring the importance of self-belief, resilience and community in the face of sudden loss. A cultural lens

Tyla Harrison-Hunt

6 years ago, I was introduced to Islam by one of my best friends at school. Since the age of 22, I have made the Al-Noor mosque my other home. I was adopted into a new brotherhood of compassion, Aroha and Manaaki. The attack on March 15th brought an immense amount of loss, sadness, disappointment and tremendous grief. We lost two people close to our hearts in our whānau too. Uncle Naeem Rashid and his son Talha Naeem. Both of whom our family are immensely proud of. This presentation will share insights into the process up to and after the attack, how we beat racism, hatred and Islamophobia and how my people- Ngāi Tahu were important in bringing New Zealand and the Islamic community together.

Compassion in Action: More than sympathy, wiser than empathy

Terry Ayling, Dr Jenny Jones, Dr Jason Mills, Skie Denham

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Symposium: Building community capacity in paediatric palliative care, end of life and bereavement care
11:00 AM11:00

Symposium: Building community capacity in paediatric palliative care, end of life and bereavement care

ABSTRACT ONE: Ms Angela Delaney

ABSTRACT TWO: Dr Leigh Donovan

ABSTRACT THREE: Dr Kate Hetherington

ABSTRACT FOUR: Ms Nicola Morgan

It is estimated that there are 32 per 10,000 children aged 0-19 years in Australia living with a life limiting condition (LLC) who could benefit from a palliative approach to care. Further, there is one child death for every sixty adult deaths in Australia. The uniqueness of caring for a dying child and a family who has suffered the death of a child means many families in Australia struggle to access the right care and support, in the right place, at the right time. The Quality of Care Collaborative Australia (QuoCCA), Paediatric Palliative Care Service (PPCS) Children’s Health Queensland (CHQ), Behavioural Sciences Unit Sydney Children’s Hospital, University of New South Wales and Redkite have worked collaboratively to address gaps in service delivery, enhance capability of health and social care professionals, deliver education and build community capacity in responding to the long term needs of children with a life limiting condition and bereaved families. This symposium will present four national ‘big impact’ practice interventions each embedded in a capacity building framework. Quality of Care Collaborative Australia (QuoCCA) Good Grief This Hurts: Building community capacity around child death Supporting parents bereaved as the result of childhood cancer: Development and evaluation of the ‘By My Side’ book Walking Alongside: developing a guide for health professionals caring for a dying child Each of these practice interventions demonstrates an innovative response to addressing large scale need. We believe these interventions can translate broadly into how the Australian community responds to the care of the dying and bereaved.


Title: Quality of Care Collaborative Australia (QuoCCA): for paediatric palliative care

Background: Children and young people have unique needs in relation to the provision of palliative care within Australia. Geography and population distribution present challenges for health care professionals (HCP) delivering home based palliative care. Through a federally funded grant the Quality of Care Collaborative Australia (QuoCCA), a collaboration of inter-disciplinary specialist paediatric palliative care (PPC) services across Australia, was initiated to address the unique needs of children, their families and the HCPs caring for them.

Aims /Purpose: To achieve quality service improvement in national paediatric palliative care in acute and community settings through education initiatives. To build the capacity of health care professionals to provide PPC in metropolitan, regional, rural and remote locations across Australia, whilst raising awareness of the benefits of timely referral to PPC services.

Design / Approach: Specialist PPC clinician(s) offer flexible ‘in time’ education, and support to health care professionals (HCP) caring for children with life-limiting conditions referred to palliative care. Educators developed innovative multi-disciplinary sessions to address gaps identified through audit and learning needs analysis. Education can be a scheduled local session, or when specific to a patient (termed “Pop-up”) the can include local community service providers. Knowledge and confidence across care domains are evaluated with pre-post surveys completed by participants.

Results / Findings: Data from the project (2015-2017) demonstrated significant increase in HCP confidence across all domains post education. Education needs to be applicable to an inter-disciplinary audience. Funding was extended until 2020.

Conclusions and application to PHPC Children with life-limiting conditions should have the right to receive quality Paediatric Palliative Care, regardless of what state or territory they live. The opportunity to upskill through planned and co-ordinated national education will assist in building capacity of those providing care and shows promise in increasing capacity for paediatric palliative care within Australia.


Title: Good Grief This Hurts: Building community capacity around child death

Background: Children with a life limiting condition routinely access specialist health care at one of the nine tertiary children’s hospitals in Australia. When a child dies, parents often describe a sense of abandonment from their child’s treating team and isolation as their community struggles in acknowledging death and dying as a source of common humanity.

Aims: In 2019 the Quality of Care Collaborative Australia (QuoCCA) in collaboration with the Paediatric Palliative Care Service (PPCS) Children’s Health Queensland (CHQ) reached out into regional communities across Queensland to build a conversation around ‘What death and dying looks like in your community’ and ‘How we can work together to build capacity around child death’.

Actions: A pilot event will take place in Rockhampton in March 2019. A champion in the Rockhampton community provided a local perspective on ‘the issue’. Over 20 organisations were invited to participate in a conversation with bereaved family members. A journey mapping activity guided by bereaved parents will identify the ‘roses, buds and thorns’ throughout their experience of their child dying and their family’s bereavement. Group Facilitators will then work with participants to identify ‘What is working well’ and ‘What can we do better’. The group will identify methods for keeping connected beyond the event with the aim to enhance pathways of support for families following the death of their child.

Outcomes: The conversation will be harvested by facilitators post-event and returned to all participants. Facilitators will build on the outcomes and learnings of this event prior to rolling out community capacity building events to eight CHQ Health Service districts.

Conclusions and application to PHPC: A Compassionate Communities (CC) approach acknowledges death, dying and bereavement as a universal human experience. This project draws on the principals of CC to build capacity throughout Queensland communities to ensure bereaved families are acknowledged and care for following the death of their child.


Title: Supporting parents bereaved as the result of childhood cancer: Development and evaluation of the ‘By My Side’ book

Background: The death of a child to cancer represents a profound and devastating loss. In 2012 our team launched ‘Compass’, Australia’s largest study of the needs and experiences of bereaved families following the death of a child from cancer. A critical theme identified in Compass was the importance of peer support in the lives of bereaved parents as ‘these are the only people who truly get it’. In response, we developed the By My Side resources, including a book and award-winning video, which share the stories of bereaved parents with the aim of normalising parents’ grief experiences and reducing their sense of isolation.

Aims: We recently completed an evaluation of the ‘By My Side’ book, examining its acceptability, usefulness and impact using feedback from bereaved parents and health care professionals (HCPs).

Design/Approach: We used a mixed methods survey distributed to individuals who had ordered the book. Bereaved parents (n=24) and health care professionals (n=7) participated. Results/Findings Most parents thought the book’s length (91.7%) and the amount of information contained was ‘just right’ (83.3%). 75% of parents reported that the book made them feel that their reactions to the death of their child made sense. Parents reported experiencing both positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). 83.4% of parents indicated that they would recommend the book to other bereaved parents. All HCPs thought that the book provided useful information about grief and most would recommend it to bereaved parents (71.4%).

Conclusions and application to PHPC: The ‘By My Side’ book was acceptable and useful to bereaved parents and HCPs. Results suggest that peer-support in written form can help normalise aspects of grief and connect and comfort parents bereaved by childhood cancer.


Title: Walking Alongside: developing a guide for health professionals caring for a dying child

Background: This audio-visual resource emerged from the University of New South Wales mixed-methods 'Compass' study (2012-2016) which explored the experiences of parents whose child had died from cancer in Australia. Parents spoke about the trusted relationships they built with health professionals who ‘became like family’ throughout their child’s cancer care trajectory. Parents also noted times when they found these relationships to be lacking, and the long-term impact of lack of support when their child died. Importantly, parents valued relationships with a variety of medical and allied health practitioners at all stages from diagnosis into bereavement.

Aims: The Walking Alongside resource is designed to support health professionals to reflect on their role in families’ lives following a diagnosis of childhood cancer. The resource is intended for health professionals who do not regularly encounter paediatric patients with life-limiting conditions, or paediatric deaths, and may find interactions confronting.

Actions: A focus group was convened, comprising 10 diverse health professionals with extensive experience caring for children and families from diagnosis through treatment, palliation and bereavement. The group discussed the ‘Compass’ study findings and responded to questions about how they engaged with families. Their insights were thematically analysed and translated into the Walking Alongside video. The results of the thematic analysis also informed the development of an accompanying worksheet entitled Conversation Starters.

Outcomes: A 4:38 minute animated video and accompanying worksheet have been professionally produced and are freely accessible online. The resources are being disseminated through email marketing, social media campaigns and conference presentations. An evaluation of the resource is underway.

Conclusions and application to PHPC: Resources such as Walking Alongside can be used by educators to assist health professionals to understand the impact of their role and behaviours when working with children with cancer and their families, from diagnosis onward.

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Concurrent Session (Auditorium)
11:00 AM11:00

Concurrent Session (Auditorium)

Chair: Samar Aoun

a. The voices of death doulas regarding their role in end of life care

All authors: Ms Deb Rawlings, Professor Jennifer Tieman, Dr Lauren Miller-Lewis, Ms Kate Swetenham, Ms Caroline Litster, Dr Huahua Yin. Flinders University

Presenting Author: Deb Rawlings

A Massive Open Online Course (MOOC) on death and dying (Dying2Learn) (Tieman et al, 2018) was offered in 2016, 2017 for the general public. It included an activity based on the work of Candy Chang, where participants wrote on a virtual wall what they wanted to do ‘Before I Die’.
To explore the responses to this activity within both MOOCs in an assumed “well” community (i.e, outside the health context).
Data from 2016 and 2017 included activity responses from 633 participants. Responses were qualitatively coded by two raters and analysed. Respondents were predominantly female (93.3%), with a mean age of 49.75. Most participants resided in Australia (87.5%.
Ethical approval was obtained from the Flinders University Social and Behavioural Human Research Ethics Committee (Project 7247).
Twelve themes emerged from the data in the following order of frequency: family; do an activity; personal aspiration; live life fully, happiness; love; the greater good; peace; legacy; gratitude; religion; and health. Responses could also be distinguished as being inward-facing (about the self), and outward-facing (about others).

This simple “Before I Die” activity encourages people to articulate values in their life more consciously, within the context of understanding that life is finite. It is hoped that this is a useful way for people to become more aware of their mortality and to live their life in a way that is congruent with what they consider to be what really matters the most to them in their lifetime. The potential of this activity for building death awareness and preparedness, and for understanding the impact on personal well-being are important considerations for future research.

Tieman et al 2018. The contribution of a MOOC to community discussions around death and dying. BMC Palliative Care, 17, 31.

b. How might the death industry make a meaningful contribution to bereavement support within the context of Compassionate Communities.

Jennifer Lowe, Dr Bruce Rumbold and Prof. Samar Aoun

In a national Australian survey, formal funeral service providers were reported as the third most prevalent source of bereavement support, after the informal support of friends and family. Despite 82% of bereaved Australians turning to formal funeral service providers for support, the potential contributions of the death industry to bereavement support is yet to be considered in the context of compassionate communities. This study was funded by and conducted in collaboration with the Australasian Cemeteries and Crematoria Association to begin addressing this gap. The aim of this study was to explore how the funeral, cemeteries and crematoria industries may be able to make a meaningful contribution to bereavement support within the context of compassionate communities, through the facilitation of memorialisation practices. The core of this qualitative study was a scoping literature review. In-depth interviews with eight service providers from the funeral, cemeteries and crematoria industries then explored responses to key themes emerging in the literature review. The public health model of bereavement support was adopted as a theoretical foundation. Three core concepts contribute to the memorialisation needs of the bereaved including the nature of loss, post-mortem identity construction and grief anxiety. In addition, there are four key considerations in determining memorialisation needs based on bereavement risk; the use of personalised ritual, physical proximity to remains, the frequency of performing rituals and the use of public or private space. Akin to the public health model of bereavement support, memorialisation needs may also be aligned to the three bereavement risk groups; high need, moderate need, low need. Although there is limited extant evidence linking memorialisation to improved bereavement outcomes due to methodological challenges in the reviewed literature, findings suggest that the process of memorialisation supports grief adjustment in various ways. We propose that these service providers become more intentional about their social contributions as educators, facilitators and consultants on meaningful, effective and therapeutic rituals for bereaved people. We encourage the exploration of community development approaches as a strategy for developing effective collaboration with their communities.

c. The Life Cafe

All authors: "Helen Fisher - Researcher and Designer @ Lab4Living (Presenting) Dr Claire Craig: Reader / Occupational Therapist / Co-director Lab4Living and Professor Paul Chamberlain: Co-director Lab4Living / Head of the Art and Design Research Centre

The last decade has witnessed a demographic change on unprecedented scale - people are living longer and with more complex, long term conditions. This presentation summarises a Marie Curie funded programme which seeks to rethink how palliative and end of life care can be provided equitably, efficiently and sustainably for future generations. It explores the methodological approach undertaken by university researchers, to engage communities in conversations around a topic often seen as taboo. The community engagement focuses on understanding what is important to different individuals in life, in care, and towards end of life. A methodology, named the Life Cafe, has been developed to gather research in an informal, comfortable manner within existing community groups and familiar environments. The Life Cafe comprises critical artefacts, creative activities and resources, co-developed with community members, that have been used to gather stories, experiences and ideas to support the design phase of the project. The Life Cafe itself has become a product that can be used across different services to establish what matters to individuals, enable difficult conversations and build connections.

A link has been identified between the Life Café and the Compassionate Communities model. The Life Café creatively facilitates the steps before a compassionate community forms, it engages community members and groups and offers a starting point for compassionate communities to grow. This presentation will therefore explore the next phase of the Life Cafe’s journey - working with Dr Julian Abel (Compassionate Communities UK) and community/local organisations/businesses to develop the Life Café to reflect the work and methods used when developing a compassionate community.

This presentation particularly addresses the themes of ‘end of life is everybody’s business’, ‘building connections and partnerships’ and’ designing compassionate spaces’ for conversations to begin.

d. Community views on ‘What I Want Before I Die’

All authors: Ms Deb Rawlings, Dr Lauren Miller-Lewis, Professor Jennifer Tieman. Flinders University

Presenting author: Deb Rawlings

Background A Massive Open Online Course (MOOC) on death and dying (Dying2Learn) (Tieman et al, 2018) was offered in 2016, 2017 for the general public. It included an activity based on the work of Candy Chang, where participants wrote on a virtual wall what they wanted to do ‘Before I Die’.

Purpose To explore the responses to this activity within both MOOCs in an assumed “well” community (i.e, outside the health context). Design Data from 2016 and 2017 included activity responses from 633 participants. Responses were qualitatively coded by two raters and analysed. Respondents were predominantly female (93.3%), with a mean age of 49.75. Most participants resided in Australia (87.5%. Ethical approval was obtained from the Flinders University Social and Behavioural Human Research Ethics Committee (Project 7247).

Results Twelve themes emerged from the data in the following order of frequency: family; do an activity; personal aspiration; live life fully, happiness; love; the greater good; peace; legacy; gratitude; religion; and health. Responses could also be distinguished as being inward-facing (about the self), and outward-facing (about others).

Conclusion This simple “Before I Die” activity encourages people to articulate values in their life more consciously, within the context of understanding that life is finite. It is hoped that this is a useful way for people to become more aware of their mortality and to live their life in a way that is congruent with what they consider to be what really matters the most to them in their lifetime. The potential of this activity for building death awareness and preparedness, and for understanding the impact on personal well-being are important considerations for future research. Reference Tieman et al 2018. The contribution of a MOOC to community discussions around death and dying. BMC Palliative Care, 17, 31.

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

Concurrent Session (Norman Lindsay)

Chair: TBA

a. Perspectives on volunteer-professional collaboration in palliative care: A qualitative study among volunteers, patients, family carers and healthcare professionals

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

Presenting Author: Steven Vanderstichelen

Title: Perspectives on volunteer-professional collaboration in palliative care: a qualitative study among volunteers, patients, family carers and healthcare professionals.

To bridge professional healthcare and the community, and to support the development of Compassionate Communities, close and collaborative volunteer-professional relationships are a necessity, both within the community itself as in institutional care. However, little is known about current palliative care related collaboration between professionals and volunteers of various organizations across the health care system. Such insights are relevant for future developments regarding volunteer efficiency, quality of care and the capacity of volunteer care to complement healthcare services and professionals.

To explore characteristics of and barriers to effective volunteer-professional collaboration in palliative care.

A qualitative study was conducted using semi-structured focus groups with volunteers, nurses, psychologists and family physicians and interviews with people with serious illnesses and with family carers in Belgium in 2017. Participants were recruited from hospital, home-care, day-care and live-in services.

Seventy-nine people participated in the study. Volunteers collaborate mostly with nurses, less with psychologists but not with physicians. Volunteer-professional collaboration entails mutual information-sharing regarding patient conditions and coordination of care provision, while nurses and psychologists provide emotional and functional support for volunteers. Lack of access to nurses, of leadership and of patient-information sharing guidelines were the most prominent barriers to collaboration.

Volunteers are in the front line of palliative care provision and collaborate intensively with nurses, particularly in dedicated palliative care services. However, collaboration with other professionals is limited. The presence and availability of nurses was found to be crucial for volunteers, both for support and to achieve integration through collaboration.

b. Country Cares: Creating a compassionate palliative care community in remote central Queensland

All authors: Michael Bishop (CEO Central Highlands Healthcare)
Noelene Lyons (Volunteer Coordinator)
Jan Catip (Registered Nurse)
Loraine Marsh (President CWA Central Highlands)
Lorraine Donohue (Volunteer)
Carolyn Daniels (Volunteer)

Presenting author: Michael Bishop

Emerald in Central Queensland is a remote community with inadequate palliative care services. Many local people with a palliative care diagnosis wishing to live and die at home are unable to have their wishes met. This inadequacy is contributed by a lack of funding to support community base nursing services, access to specialist services; funding for equipment and home modifications and the tradespeople to undertake the work. Many older people and people with a palliative care diagnosis leave the community for coastal community to access supports.
This presentation describes a process led by the Emerald Medical Clinic and supported by the community to establish a volunteer service for local people and their carers. The service adopted the training program developed by the Victorian Palliative Care Association and aims to develop an ongoing compassionate community.
The paper goes on to describe the supports offered to volunteers and the reasons that the volunteers have become involved in the Community Palliative Care Volunteer Service. Reasons given by volunteers for joining the program have included: personal care experience; contributing back to the community; wish to help others and decreasing social isolation.
The Emerald Medical Group now has plans to develop a small Palliative Care Centre offering some day respite.
The paper links to the Conference themes of Building connections and partnerships and End of life is everybody’s business

c. Social innovation in partnership

Vicki Barry Business Development Lead - Palliative Care WA
Barbara Binns Weavers Implementation Lead - The Australian Centre for Social Innovation

Weavers was created through a co-design process by The Australian Centre for Social Innovation (TACSI) in 2011. We aimed to address the significant challenges faced as a family carer which occur at many stages along the caring journey from diagnosis towards end of life. The Weavers model creates ways to respond to the unique and changing needs along the way.

As a strength based model Weavers has demonstrated the ability to support carers regain a sense of control and improve quality of life. Through recruitment of volunteers with personal caring experience and providing specific training and support the Weavers model offers valuable support to carers and activates knowledge and experience within communities. Weavers is a model of peer support that capitalises on the skills and knowledge of lived experience.

Since 2016 Weavers has been adapted to many caring contexts including community and residential care, disability and palliative care. Weavers fits within the Compassionate Communities approach in adding to the ways in which communities’ support people at the end of life.

Through a partnership with Palliative Care WA and TACSI the Weavers program has been developed with context specific adaptions in Albany Community Hospice - a community where what it means to be a Compassionate Community is seen in action. As a flagship site Albany Hospice is demonstrating what it takes to implement an innovative approach for carers in community. The vision of PCWA is to develop the reach of Weavers across regional communities to provide community support where service provision may be reduced.

During this presentation Vicki Barry (Business Development PCWA) and Barbara Binns (Weavers Implementation Lead TACSI) would like to share with you how Weavers creates ways to harness the wealth of knowledge, expertise and understanding that lived experience brings in supporting communities towards and through the end of life.

d. Guess what happened on the way to our research site? Indigenous research methods guide and protect

Dr Tess Moeke-Maxwell, Mrs Kathlene Mason, Professor Merryn Gott, Dr Lisa Williams

Presenting Author: Dr Tess Moeke-Maxwell

Previous research findings identified the critically important role Māori whānau (including extended whanau) play in caring for (kaumātua) older people at end of life. The care values whānau bring to this care work are based on ancient cultural and spiritual principles passed down by tūpuna (ancestors). The Te Ārai Palliative Care and End of Life Research Group designed the Pae Herenga study to investigate these traditional end-of-life customs. A research approach was needed that could keep participants with a life limiting illness culturally and spiritually safe during face-to-face interviews and digital story workshops, as well as bereaved whānau.
We explore the value of using a Kaupapa Māori Research approach in a qualitative investigation of indigenous New Zealanders end of life care customs by drawing on digital stories. Kaupapa Māori Research methods are explored for their ability to inform mutual, reciprocal, empathic, respectful and culturally safe relationships between researchers and participants.
A Kaupapa Maori Research approach provided the flexibility needed to cope with unanticipated cultural obligations that emerged during the course of fieldwork. Indigenous kaumātua involvement during fieldwork excursions provided the research team with crucial cultural guidance and support. The presentation will provide two examples where the Pae Herenga study’s research approach strengthened the research team and protected participants.
Kaupapa Māori Research methods provide a safe and ethical approach to working with indigenous people in end-of-life studies.

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Workshop: Are you partnership ready? (Club Room)
11:00 AM11:00

Workshop: Are you partnership ready? (Club Room)

Wendy Gain, Independent Consultant (Partnership Broker, Appreciative Inquiry Facilitator), Brisbane
John Rosenberg, University of Sunshine Coast/Western Sydney University
Background and Aims: Compassionate Communities rely upon collaboration between communities, palliative care services, health care services, and civic bodies such as local governments. This collaboration is usually well-intentioned but poorly conceived and understood. A clearly articulated understanding of ‘partnership’ is a powerful step in transforming the development, implementation and outcomes of joint efforts to create and sustain Compassionate Communities.
The aim of this workshop is to engage participants in the key concepts and concrete application of partnership development methods.
Interactivity: This is a fully interactive experience. Participants will work with the facilitators and each other in meeting the aims of the workshop. Activities include an Appreciative Inquiry process to use a strengths-based approach to partnership development.
Learning Outcomes: Participants will 1) gain a clear understanding of what is – and is not – a partnership; 2) understand the evidence-based, recognised principles of establishing and maintaining partnerships; and, 3) identify practical approaches to partnering to take back to their role in Compassionate Communities.
Conclusions and application to PHPC: Successful partnerships don’t happen by accident. Applying sound and practical guidance for participants to establish and maintain partnerships within and between groups will facilitate the establishment of sustainable Compassionate Communities. The knowledge and skills gained in this workshop also apply to partnerships between palliative care services, health care service and civic bodies.

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Showcase: Developing compassionate communities in Taipei through public private partnership (Oxley/Evans)
11:00 AM11:00

Showcase: Developing compassionate communities in Taipei through public private partnership (Oxley/Evans)

Poster Showcase

All authors:

Dr. Chih-Kuang Liu, Superintendent of Zhongxing Branch, Taipei City Hospital, Taipei, Taiwan

Dr. Chin-Yu Ho, Department of family medicine, Taipei City Hospital, Taipei, Taiwan

Dr. Ching-Yao Tsai, Department of Ophthalmology, Taipei City Hospital, Taipei, Taiwan

Dr. Lin-Chung Woung, Deputy Superintendent, Taipei City Hospital, Taipei, Taiwan

Dr. Ming-Chen Chen, Geriatrician & Attending Physician, Department of family medicine, Taipei City Hospital, Taipei, Taiwan

Dr. Ming-Chung Ko, Director of Department of Urology, Taipei City Hospital, Taipei, Taiwan

Dr. Pei-Wen Wu, Department of family medicine, Taipei City Hospital, Taipei, Taiwan

Dr. Sheng-Jean Huang, Superintendent, Taipei City Hospital, Taipei, Taiwan

Dr. Sheng-Jean Huang, Superintendent, Taipei City Hospital, Taipei, Taiwan

Dr. Wen-Ruey Yu, Department of family medicine, Taipei City Hospital, Taipei, Taiwan

Mr. Chia-Jen Liu, Superintendent Office, Taipei City Hospital, Taipei, Taiwan

Mr. Shih-Chih Wang, Department of Health and Welfare, University of Taipei, Taipei, Taiwan

Mr. Te-Chun Yeh, Academy of Humanities and Innovation, Taipei City Hospital, Taipei, Taiwan

Mr. Tsun-Cheng Huang, Deputy Superintendent, Taipei City Hospital, Taipei city, Taipei, Taiwan

Mr. Tsun-Cheng Huang, Deputy Superintendent, Taipei City Hospital, Taipei, Taiwan

Mr. Yi-Sung Ho, Chairman of Shennong Temple, Shilin, Taipei, Taiwan

Ms. Chun-Mei Hou, Department of Nursing, Taipei City Hospital, Taipei, Taiwan

Ms. Hsin-Yi Lin, Social worker’s Office, Taipei City Hospital, Taipei, Taiwan

Ms. Ming-Hsuan Hsieh, Department of Planning Administrative Center, Taipei City Hospital, Taipei, Taiwan

Ms. Pei-Jiun Pan, Public Relations Center, Taipei City Hospital, Taipei, Taiwan

Ms. Shih-Ju Wang, Section Chief, Planning Office, Taipei City Hospital, Taipei, Taiwan

Ms. Shu-Wen Wu, Department of Planning Administrative Center, Taipei City Hospital, Taipei, Taiwan

Ms. Tsai-Ping Fu, Department of Planning Administrative Center, Taipei City Hospital, Taipei, Taiwan

Ms. Tzu-Hui Chen, Public Relations Center, Taipei City Hospital, Taipei, Taiwan

Ms. Yi-Chin Lin, Department of Planning Administrative Center, Taipei City Hospital

Ya-Fang Chen, Department of Nursing, Taipei City Hospital, Taipei, Taiwan

a. The Role of a Hospital in the Promotion of Compassionate Community
Hospitals play the roles in community such as medical service provider, providing care to the vulnerable group, integrating community medical resources and health promoter. With the support of the hospital, multiple and creative services could be provided to the community, therefore, the community residents are empowered, people can learn knowledges about health and end-of-life palliative care.
In 2018, Taipei City Hospital embraced the idea of Professor Allan Kellehear and introduced the concept of palliative care into the community. We promoted Compassionate Community in local communities according to Compassionate Community Charter.
Promoting Compassionate Community with the efforts of our hospital helped construct the core value of holistic care, wisdom of life, humanistic care and social network, therefore enabling the events of home care, seminar about health, Life Issue Café, “Love for Life, Love for the Land Festival”, caring the elderly and congregate meal, advance directive and promoting Good Death.
We investigated 180 of total 1,270 senior residents in Jiujia Village, Shilin, Taipei and 68.9% of them are aware of the promotion of Compassionate Community, besides, the satisfaction of all kinds of events is higher than 90%.
Despite the current trend of interest oriented hospital management, we should have medical institution’s social responsibility, be the companion and carer of community residents, introduce the concept of community palliative care and achieve the goal of aging in place as well as good death.

b. Preventive drug use at the end of life in nursing home in Taiwan

At the end of life, residents in nursing home are significant health consumers. They are at risk of polypharmacy and adverse drug events. Therefore, prescription in hospice care (less than months) should be regularly assessed and inappropriate medications should be withdrawn.
Our study aimed to examine the preventive drug use in hospice-care patient and usual-care patient at the end of life in nursing home.
We utilized retrospective cohort study. The prescription data of deceased patients in nursing home in Yangming Branch of Taipei City Hospital were extracted from the electronic medical records, 2016-2018. Preventive drugs use in all patients were collected at three time points: 4 weeks before the death, 2 weeks before the death and the date of the death.
In our study, 11 hospice-care and 11 usual-care patients were collected. 22 patients, median age at death 85 years, 68% women. On the day of death, 45.4% had preventive drugs, We found the numbers of preventive drug use in hospice-care are less than those in usual-care patients in each time point. The ratio of patients taking/not taking preventive drugs in palliative care were less than those in usual care in each time point. In addition, we found the three most common categories of preventive drugs in all patients: anti-hypertensive drugs, insulin and oral hypoglycemic and anticoagulants and aspirin.
Preventive drugs are relatively less use in hospice-care than those in usual-care patients at the end of life in nursing home in Taiwan. Improvements in end-of-life care and more appropriate drug use in nursing homes is needed.

c. Promoting the elders’ death literacy with the Life Issue Café in the community
As the promotion of concepts of palliative care, death literacy is gradually known in western countries. Death literacy means the knowledge and ability to gain, to understand and to make use of the information related to end-of-life and palliative care.
By 2024, Taiwan will become a super-aged society. Traditionally, Chinese Culture taboos the issue of life and death; only by improving people’s death literacy in communities could the goal of community palliative care and “Good Death” be truly achieved.
The International Compassionate Community in Old Street, Shilin, Taipei has been boldly introducing the Life Issue Café to the community since April 2018, which the student volunteers lead the elderly discussing issues such as “Life and Death” and “End-of-life”. The total time of the event is about 1.5 hours with 3 rounds of 20-minute dialogues. After discussion, the collective intelligence is shown and shared with visualized analysis.
During 2018, 4 Life Issue Café events were held with 60 attendees including table hosts, student volunteers and 27 elder citizens. The result of pre-test and post-test questionnaire for elderly of the attitude toward death is:
1. Do you think it is important to discuss the issue of death with others: 84.2% vs. 90.9%
2. Do you find it difficult to discuss with others: 57.9% vs. 45.5%
3. You can face death bravely: 78.9% vs. 90.9%
The 7 principles of the World’s Café enable us to begin the dialogue about life and death. The World Café is a simple, flexible and effective way to make people have more identity, sense of belonging and sense of participation in their community.


Taipei TianHou Temple is located in Ximending, Wanhua District, Taipei. The Wanhua District is the earliest development township in Taiwan. Ximending is also a downtown in Taipei. The old and new cultures are in harmony and intertwined. In recent years, under the influence of globalization, isolation is a tendency. In the traditional Chinese culture, temples are the center of belief of the people and a place for the community to gather. The temple promotes the "Tianhou Temple compassionate care community” with the concept of "empathy". Temple has the power to gather people, re-energize the trust and subtly enlighten people’s compassion.
Caring of Marginalized people is one of goals of the compassionate care community. In addition to infectious diseases and physical and mental problems, there are many potential social problems. Continued follow-up care and counseling sites have the advantages of accessibility and acceptability, respond immediately to handle these potential social problems. Respect for autonomy, inclusiveness, and medical and social mutual care reflect the four concepts of life and establish a friendly life circle in the TianHou Temple compassionate care community. TianHou Temple was serve as a base, providing basic living services through referrals from community leaders and residents. . Establish a peer-to-peer network through public-private partnerships, and connect local non-profit organizations with powerful locals in the community to work together for take better care of the marginalized people.
It provides the following services through network building and cross-professional and cross-departmental collaboration.
1. Provide emergency supplies: warm supporting events and winter mobile service are providing material services in the cold
2. Medical first aid: marginalized people, who need emergency medical care, can have immediately medical services.
3. Provide volunteer medical consultation for the poor (the homeless or rehabilitated addicts and criminals), such as a free health checkup service yearly.
Government: Social Welfare Division /City Hospitals
Private: Foundation / The Elderly care centers / Association
Local: Community leaders / Friends / Families


Caring of Marginalized people is one of goals of the compassionate care community. In addition to infectious diseases and physical and mental problems, there are many potential social problems. Continued follow-up care and counseling sites have the advantages of accessibility and acceptability, respond immediately to handle these potential social problems. Respect for autonomy, inclusiveness, and medical and social mutual care reflect the four concepts of life and establish a friendly life circle in the TianHou Temple compassionate care community. TianHou Temple was serve as a base, providing basic living services through referrals from community leaders and residents. . Establish a peer-to-peer network through public-private partnerships, and connect local non-profit organizations with powerful locals in the community to work together for take better care of the marginalized people.
It provides the following services through network building and cross-professional and cross-departmental collaboration.
1. Provide emergency supplies: warm supporting events and winter mobile service are providing material services in the cold
2. Medical first aid: marginalized people, who need emergency medical care, can have immediately medical services.
3. Provide volunteer medical consultation for the poor (the homeless or rehabilitated addicts and criminals), such as a free health checkup service yearly.

f. The Reciprocity of Student Participation in Compassionate Community- An Example of University Social Responsibility

As a part of community, university student can play an important role in community living. Universities are expected to engage more in contributing to the betterment of society through the integration of social responsibility into institutional management, teaching, research, services and public activities. Universities are obligated to work together to address the economic, social, cultural and environmental challenges in the their local community and to find solutions.

The Shilin Old Street Compassionate Community collaborates with the universities nearby, and set up courses in community setting. A curriculum was designed to specifically divides students into four groups and assign them with care responsibility of different condition elderlies: healthy, sub-healthy, severely disability, and terminal cancer. During weekly visit, university students walk into the community and successfully link the theory in higher education with practice in community.

Reciprocity can be found in this project, students take part in community care and also learn the experience of community development, reflect the knowledge of life and death, and also improve the inter-generational conversation between elderly and youth. The concept and the delivery of public health palliative care thereby are enhanced, death literacy are promoted, and the culture and respect for life are inherited.

g. A New Role as a Community Manager in the Promotion of Compassionate Community

The promotion of compassionate community can’t be simply relied on the community and needs the intervention of supportive groups such as the authorities, the city council, hospitals, schools and religious organizations. Besides, a mediator is needed to integrate the community and surrounding organizations.
Taipei City Hospital promotes Compassionate Community in Taipei, Taiwan. We founded Compassionate Community Committee and employed a community as well as hired a community manager to be the mediator. The community manager is not only responsible for contacting the community with surrounding organizations, but also assisting in home visit, holding community lectures and events and caring the vulnerable groups.
The community manager could devote to community service, provide people in the community with more support. Therefore, people could give more care to the place they live and be more identified with it; furthermore, they could also be supportive to each other.

h. International Compassionate Community Day of Taipei City

The grand opening ceremony of Compassionate Community in Old Street, Shilin, Taipei City, Taiwan was held on April 6th, 2018. The concept of the ceremony was “Bringing back both Fudeyang Aqueduct and the affections in Shilin Old Street”. In testimony of the authority and NGOs, Taipei City Mayor Dr. Wen-Je Ko signed to support Compassionate Community in Old Street, Shilin, Taipei City, and announced April 6th to be “International Compassionate Community Day of Taipei City”. Now we have 6 Compassionate Community locations, with everyone’s effort, every single event could be gathered to form a universal value of good intention circle in the society, therefore, a community of “mutual trust, social cooperation, delivering medical care to homes and the aged ones are cared till death”. Furthermore, we want to pass our experiences on and introduce the achievement of Taiwan to the world.

i. Discussion on the Compassionate Community by News report
In the spirit of compassion city charter of international concern, through the cooperative medical institutions and community life of the dying policies, life hospice care, concern for community life death issues, combined with Taiwan media reports. Therefore, Taipei City Hospital and the Scholar Shennong Palace, Shihlin District, the old Yukari Yukari join hands in Shihlin District, the old established Taiwan's first international compassionate care for the community and become "an international city and Mercy Care Community" (PHPCI) a is the international organization in Asia and the second partner community, and so Taipei Mayor Ko Wen-je announced April 6 for the "compassionate care Taipei international community day", the international charity caring spirit everywhere in Taipei city charter.
In order to promote the policy of " Compassionate Community ", the Taipei City hospital has worked with the temple, school groups, communities and other media to support the community and develop community skills, knowledge and ability to enable more people to face the issues of death, dying and bereavement.
As we enter the aging society, the demand for hospice care and long-term care continues to increase, especially when the professional intervention is insufficient at the end of the disease and during bereavement. Community participation can provide continuous support, thus developing a sustainable community support mode.
In order to promote a caring and caring community, people should have a sense of belonging and a sense of belonging in the cafe, compassionate care hall, life and life story films, and life care education. In addition, the media coverage will inspire more government agencies, hospitals and communities in Taiwan to spread influence and help the weaker generation to enhance the quality of care at the end of life.
Since the mayor of Taipei, Ke Wen-zhe, declared the April 6th "Taipei international community compassion day", the 7 affiliated hospitals of Taipei City Hospital have actively worked with community units. Apart from the compassion and care community of shiilin old street, there has been the establishment of Nei Hu Lake, the merciful care community, Taipei Wenshan guide compassion care community, Taipei Thean Hou Temple compassion care community, Datong Qing'an compassion. Five caring and caring communities, such as Huai community, Taipei City, Zhuang Tsai Fu Court, and compassion care community. The media disclosed the relevant reports of compassion and care for the community. It also attracted the attention of other government agencies, religions, non-governmental organizations and schools, and came to visit the benchmarks and gained recognition and support. In succession, it was planning to set up a caring and caring community with Taipei City hospital.
Through the media coverage, we should enhance the public's attention to the compassionate community. The Taipei City Hospital connects civil organizations such as government agencies, communities, social welfare institutions, businesses, and charitable religious organizations to build community partnerships, promote and build community activities of caring for the city, support each other, care for altruism, and realize the "Taipei" in the mind. The city is transformed into the universal value of the good circulation of society, and the experience is shared and passed on to any corner of Taipei, forming a caring community model from birth to death, and then leaps onto the international stage.

j. Death Literacy for the Elders in the Compassionate Community

Death Literacy is an intelligence of execution, as well as the knowledge and ability of gaining, understanding and utilizing information about end-of-life and palliative care.
An investigation was performed with a self-administered structural questionnaire to estimate the knowledge and attitude on end-of-life and dying of people in the community.
We investigated the residents of the International Compassionate Community in Old Street, Shilin, Taipei with a questionnaire to estimate death literacy of the elders in communities in Taipei.
212 elders in the community were investigated and the results show that educational background is highly correlated with death literacy. Besides, a significant difference was found between sexes in the questions “Do you think it is important to discuss the issue of death with others?” as well as “I know that Compassionate Community is promoted in Jiujia Village”
When facing the challenge of aging society, we should not only put emphasis on long term care after dementia and dysfunction, but also continue promoting death literacy of community residents, medical teams and families; therefore, the purpose of providing holistic care from womb to tomb and constructing a compassionate community could be truly achieved.

k. Construct a sustainable “Youth-Elder Collaboration for a better life” community supporting system: Taking Qing-an Compassionate Community in Datong District for example

Traditional temple is not only a dominant cultural feature in Taiwan, but also a spiritual sustenance for many people. Besides, neighborhood and schools are critical in bringing the community together. The cooperation between traditional temple, neighborhood and schools could be a major influence of practicing community medical care and strengthen community care.
Combining local forces of temples and communities, we want to develop a sustainable community supporting system in the most amiable and approachable way. Therefore, people could receive appropriate care and support in different stages of life including birth, aging, disease and death.
Methods and Results
Qing-an Compassionate Community in Datong District was initiated by Zhongxing Branch, Taipei City Hospital. We integrated resources from the community such as Qing-an Community Development Association, Datong District as well as Fu-Shou Temple, Chongcing Village, Taipei Municipal ChongQing Junior High School and Taipei Municipal Dalong Elementary School. Besides, traditional Glove Puppetry Startles, Congregate Meal for the elders and school education were combined with home care provided by hospital, home palliative care and health screening to form a sustainable community supporting system.
Primary education and junior high school education helps promote life literacy to child at the early stage and introduce the issue of life and death into daily life. By passing on traditional culture and hospitals providing health screening, interaction between different generations would be promoted and the purpose of “Youth-Elder Collaboration for a better life” could be achieved.

l. The Breakthrough on Introducing the Day-Care Institution Disabled Residents to the Community

The time it takes for the disabled people to be integrated into the community life depends on how much the social support network is covered. The higher the acceptance, the more social support network for the disabled people, therefore, the more encouragement for them to be integrated in community lifestyle.
The International Compassionate Community in Old Street, Shilin, Taipei has been expressing care for the outcasts since it was created. By integrating traditional culture and community campaigns, we planned to help the disabled ones be integrated into the community, as well as to promote the physical, mental and spiritual health of the disabled ones, by introducing the community to them with traditional cultural activities and art campaigns together with accompanying volunteers.
Since 2018, we planned 10 sessions of “Slow angels flying in the community” and other courses of caring technique for the disabled people, as well as inviting them to community activities.
By attending community activities, the bridge between the disabled and the community was constructed. This could be an encouragement for them to be integrated to community, besides, the acceptance would be higher in the community. Furthermore, with the volunteers accompanying, the disables could gradually open their hearts to people.

m. Promoting Death Literacy with The Festival of Life, Death and Dying

According to the Compassionate Community Charter, there are 13 ways of introducing the concept of palliative care to the society and make changes including anniversary celebrations and campaigns.
By holding the campaign, it breaks the taboo of traditional Chinese Culture toward life and death, as well as improves people’s knowledge about palliative care and alter people’s attitude toward life and death.
Methods and Results
The International Compassionate Community in Old Street, Shilin, Taipei is a community with traditional culture. We work with the more than 200-year-old Yu-ying-kung Temple by holding campaigns including traditional festivals, cultural guide tour and outdoor activities in order to promote and broaden policies of palliative care. Besides, we utilize the power of the community to form the circumstance of mutual help and care and make people being more positive toward the end of life. We hope people could gain more social support and better recovery after facing death, dying and bereavement.
The campaign rewrapped the issue of life and death with a series of games and took the chance of traditional festivals to make people think the events in life such as being born, growing old and being happy. This is just the spirit of Compassionate Community which aims to root humanistic care and holistic care into the community, therefore, to look after the physical and mental health of the residents.

n. Shorten the Distance among People- Long Chopsticks Activity

There are 50 elder people participate in the gathering meal of Shilin Old Street Compassionate Community per month. All kinds of activities are arranged before the meal for the elderly to learn some talents and for active ageing.
Aside from encouraging the elderly to go out and have some fun to learn all kinds of health-promoting concepts, the elderly could learn to take care of each other, and the interaction among them can also be enhanced. By doing so, the self “value” can be developed so as to obtain the daily needs and spiritual satisfaction.
When having the gathering meal for the elderly every month in Shilin Old Street Compassionate Community, the 30-cm long chopsticks act as the serving chopsticks for the elderly to get the food for other people when eating.
It is not easy for the elderly to use the long chopsticks to get the food; however, they can get the food for many other people on the same table, which is to improve their interaction and care when eating. The 30-cm long chopsticks have the magic to shorten the distance among people!
Through the promotion of the long chopsticks activity can not only shorten the distance among people, but also share the spirit of empathy. It is hoped that the passion of helping each other among people can be retrieved, and the core value of the compassionate community can be reflected.

o. The Promotion of Health Literacy- When the Chinese Medicine Doctor meets Shennong

There are 7000 people in the Old Jiali Village of Taipei City. The population of the people over 65 years old is around 1368 in the village; 56 of the people over 90 years old; 6 centenarians. In the village, the Emperor Shennong is worshipped in the Shennong Temple, who is respected as the founder of the Chinese Medicine. With the historical and cultural fusion, Taipei City Hospital (TCH) held the health lecture “When the Chinese Medicine Meets Shennong” to provide the residents with correct concept of Chinese Medicine and improve their health literacy.
Since the high percentage of the elderly, they tend to misuse the Chinese medicine. Through the health lecture “When the Chinese Medicine meets Shennong”, the one blending with the community traditional religious culture, the correct concept of the Chinese medicine can be provided, improve the residents health literacy, and enhance the community care service.
Every third week of the odd months, the Chinese medicine doctors and dieticians show the attendees how to make the medicinal diet and know more about the Chinese herbal medicine. The correct concept of the Chinese medicine is also provided. Therefore, the people could not only come to worship Shennong, but also correct the incorrect concept of the Chinese medicine, improving health literacy.
From the previous lectures of “When the Chinese Medicine Doctor meets Shennong”, the number of the attendees of the community has been increasing, which means the fusion of history, religion and culture. Through the model of “When the Chinese Medicine Doctor meets Shennong”, meeting the community traditional culture, people could understand the needs and attitude of how to use the Chinese medicine, and obtain correct health literacy. This is to avoid the incorrect concept and usage to cause any harm to their health.
Taipei City Hospital, Old Jiali of Shilin District and Shennong Temple created Old Jiali as the “Shilin Old Street Compassionate Community” collaboratively. With the combination of the community traditional humanities and care, the activity promotion of the holistic care was provided, and the exchange of the cross-generation life wisdom was proceeded. Apart from brining the medical service and health literacy into the community, caring for the elderly in the village, it becomes a community health model with the combination of the important temple in the Taipei city, the community, and the professional medical service.

p. Wearable ECG Recorder Helps Improve Community Health and Welfare

Atrial fibrillation is the most common cardiac arrhythmia in Taiwan. Cardiac arrhythmia is a risk factor of stroke, and the risk of stroke in patients with cardiac arrhythmia is 5 times as it is in ordinary people. In Taiwan, it is estimated to be 230,000 people with cardiac arrhythmia, account for 1-2% of the total population.
The incidence of cardiac arrhythmia increases with age. Early intervention helps delay dysfunction and improve the quality of life during the final stage of life.
The International Compassionate Community in Old Street, Shilin, Taipei held a public health education and promotion campaign with a cardiac arrhythmia screening as well as an attitude toward life and death questionnaire for the elders conducted by the community volunteers and health professionals.
Two sessions of the campaign were held in 2018 and 310 elders were involved. The results of cardiac arrhythmia screening showed the detection rates were 1.89% and 2.04%, respectively. As more elders were screened, the detection rate will show a stable interval. It is worth it to mention that the screening rate of arrhythmia including AF were 17.5% and 23.47%, respectively, which may help an early referral to the hospital for further follow up.
The promotion of compassionate community includes not only a life intervention for residents, but also a protection of life. The importance of prevention was long emphasized by the medical community. We expect the public health education and promotion campaign of “Cardiac Arrhythmia Screening Prevents Stroke” helps screening arrhythmia including AF. As cardiac arrhythmia is found early with an early intervention, stroke could be prevented. Thus, we may help the cardiac arrhythmia patients and their families say good-bye to stroke.

q. The Operation of Compassionate Community in Shilin Old Street

The Compassionate Community in Old Street, Shilin, Taipei works in the spirit of International Compassionate City Charter, operates in accordance with the culture in Taipei in order to achieve the goal of providing care physically, mentally and spiritually as well as to enhance the value of Compassionate Community in Old Street, Shilin, Taipei. We continue promoting end-of-life policies, end-of-life care, cooperation between NGOs and communities, caring about end-of-life issues, holding festivals and presenting awards. Also, we introduced aesthetics of living to attract the community putting more emphasis on the issue of end of life. These events help explain the diversified actions and development about end-of-life issues, they also help improve end-of-life care for social outcasts, therefore, the influence could be outreached and the underprivileged next generation.

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Concurrent Session (Bligh/Phillip Room)
11:00 AM11:00

Concurrent Session (Bligh/Phillip Room)

Chair: Kitty Vivekananda

a. Health professionals’ experiences of providing advance care planning in the context of clinical deterioration: A qualitative study

Ms Wendy Pearse (presenting), Dr Maureen O'Neill, Prof Mervyn Hyde, Assoc Prof Florin Oprescu

Background Approximately one-third of Rapid Response Team reviews in hospital in response to clinical deterioration involve a patient who is approaching the end-of-life. Patients’ health status can deteriorate suddenly with little time to discuss goals and/or ceilings of care as part of an Advance Care Planning (ACP) process. It is not appropriate for the RRT to provide ACP as a clinical service, however this event could be the catalyst to do so. It is not well understood whether this occurs, and the dearth of research about the role and experience of multidisciplinary teams in providing ACP highlights a current gap in the literature. Aims This study examines the experiences and beliefs about perceived triggers, facilitators and barriers, roles and responsibilities of the range of health professionals providing ACP as a clinical service following the clinical deterioration of hospital inpatients. Design Fourteen health professionals from medical, allied health and nursing groups participated in an individual, in-depth, semi-structured interview. Interviews were digitally recorded, transcribed verbatim, and transcripts entered into NVIVO. Line-by-line coding was conducted and a detailed thematic analysis undertaken to analyse the data using an inductive approach. Results Many participants were knowledgeable about some, or all key elements of ACP. Participants identified clinical deterioration as a prompt for ACP provision, without necessarily completing formal documents. A team-based approach valuing the diverse skills and experience of health professionals was supported. Medical staff considered the overall responsibility for decision-making to lie with them, with allied health and nursing staff having key roles in working through ACP processes such as documentation. Conclusions This study identified implications for practice, including how clinical deterioration may trigger ACP provision, and readiness for a broader range of health professionals to provide ACP. This will require support through effective continuing professional development, policy that considers generalist and specialist roles for ACP provision, and consideration of potential impact on professional groups by professional organisations.

b. Using Talking Mats, a visual communication framework, to support people to think and plan ahead for the end of life

Dr Joan Murphy, Co Director, Talking Mats Ltd
Lois Cameron, Co-Director, Talking Mats Ltd
Dr Sally Boa, Head of Education & Research, Strathcarron Hospice
Mrs Susan High, Community Development Lead, Strathcarron Hospice
(presenting) Mrs Marjory Mackay, Director of Nursing, Strathcarron Hospice

Using Talking Mats, a visual communication framework, to support people to think and plan ahead for the end of life
We conducted a community project, ‘living right up to the end’, which aimed to find out what people living with long term conditions want and need to support them to make plans for the future. People told us they found it difficult to talk to family about making plans and preparing for death.
We aimed to develop a tool to support people living with deteriorating health to have conversations about making plans for the future.
We worked in partnership with an international Social Enterprise (Talking Mats), who have developed a visual communication framework that supports people to express their views. We worked with Hospice staff to develop topics and options relevant to planning ahead (Affairs; Care/treatment and Personal values). These were then tried out by a range of people living with long term conditions in our local community.
Use of the Talking Mats ‘thinking ahead’ resource helped people to reflect on their preferences relating to care and treatment and discuss these with their families and the health and social care team. The symbols also enabled them to identify what plans they had made and helped them realise what they still needed to do. They were then able to develop actions plans relating to planning ahead.
Conclusion and Application to PHPC:
Staff and volunteers found training on the resource essential to help them use it effectively. It provided them with a tool to support people to broach a difficult subject. Talking Mats can be used by staff and compassionate neighbours in any setting to support people to express their views and help them plan for the end of life.

c. Reflecting on life: How can we ask the right questions with faced with death?

Background Community geriatric medicine allows specialists to work closely with Residential Aged Care Facility (RACF) staff, General Practitioners (GPs), residents and families. Patients in RACFs frequently have life-limiting (terminal) diseases such as dementia and frailty. Furthermore, they may have expressed through their lives that they never wished to be in a RACF. Through a combination of medical intervention and circumstances, patients may have become RACF residents and lost control of the present and future they wanted.

Aims Through a case exploration, reflections will be offered on key moments where Advanced Care Planning (ACP) could have occurred. The aim is to help participants consider what they could change in their own spheres of influence. Actions A 92-year-old has been a RACF resident for one year. The previous year she was treated for cancer which markedly worsened her function, thinking and quality of life. She had previously expressed that she never wanted to go to a nursing home and in recent years said she was ready to die. A recent stroke has left her fully dependent on all instrumental activities of daily living.

Outcomes Upon reviewing this lady, many viewpoints were considered from the resident’s family’s perspective, the GP and the RACF staff. It was agreed that the lady was coming to the end of her life, so palliative care was initiated with a focus on providing comfort for her remaining days. The family asked why this could not have happened two years ago and were happy for her now but sad that she had two years of ‘misery’.

Conclusions There are key moments in someone’s life where recognising the balance of benefit vs harm in medical care may change. Reflecting on this case and anchoring with participants’ experiences help to identify how we can take-home strategies to change our local cultures.

d. End of life care issues for people diagnosed with a mental illness

(presenting) Ms Helen Butler, University of Auckland
Mr Tony O'Brien, University of Auckland

End of Life Care Issues for People Diagnosed with Mental Illness (MI)

Background - When working in mental health I noticed that people diagnosed with Mental Illness (MI) were often living with and dying from their physical co-morbidities. Whilst working in specialist palliative care I observed the small number of patients referred to or within our service who had MI diagnoses.

Aims/Purpose – For my masters’ project I undertook a literature review and retrospective cohort study which identified the rates of access to specialist palliative care for people diagnosed with MI compared to the general population.

Results/Finding – The findings of current literature (including NZ and Australian studies) show increased morbidity and mortality risk for people diagnosed with MI. There is a need for access to a palliative care approach for people with MI who are also diagnosed with life limiting physical illness. The results of my research identified that people diagnosed with MI who died of physical co-morbidities were less likely to access specialist palliative care services.

Conclusions and Application to PPHC – I will identify how this study links to the wider issues of palliative care access and provision for people who experience MI. I will contextualise my findings within our current health system and provision of palliative services including who is best placed to be providing palliative care and supporting people who are diagnosed with MI and who are dying.

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Symposium: Intellectual Disability (Ballroom)
11:00 AM11:00

Symposium: Intellectual Disability (Ballroom)

Andrea Grindrod, Dr Michele Wiese, Anna Holliday and Maria Heaton

There is broad consensus that end-of-life care offered to people with intellectual disabilities (ID), and other vulnerable populations, should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various systemic barriers are encountered that result in the absence of choice for people with ID and poor end-of-life outcomes, reflecting the inequitable life circumstances of living with a disability. “In her mid-forties, after a lifetime of forced institutionalised living as a Ward of the State, Rosie had her own room for the first time in her life. She could arrange it as she liked and decorate it as she wanted. She kept her things well organised, her clothes and her jewellery, and she was particular about the way she wore her bangles and beads and pearls: they had to sit outside her cardigan…She could now choose which chair to sit on and which couch to lounge on – a transformation in her life. She liked pink clothes and could choose these. And she could read, write and draw…” Rosie was one of the lucky ones. With no family contact since birth, her committed disability care staff, supportive friends and palliative care services cared for her, so she could die in the bed that she loved so much, her own. Rosie’s dying experience is not typical of those with intellectual disabilities, whose vulnerabilities mean that familiar people and surroundings is even more important than it is for most. This symposium reports on an emerging Public Health Palliative Care national collaboration in Australia to privilege the voice of people living with intellectual disability, to reorient the systems that fail them and to challenge the systemic barriers faced that result in poor outcomes at the end of their lives.

Dying without a Voice: A case for the role of public health palliative care in advocating for equitable end-of-life care outcomes for structurally vulnerable populations

Andrea Grindrod

Theme: Diversity and Inclusion Background Following de-institutionalisation reforms in Australia in the 1980s, many people with intellectual disabilities were relocated into ‘home-like’ residential settings. A public health approach recognizes that wellbeing, including wellbeing at the end of life, is generated and shaped by where we live, work, learn and socialize. This has implications for how and where people with intellectual disabilities experience the end of their lives. Informed by social justice and concern with equity of access to resources, public health offers a framework to challenge structural barriers affecting decision-making and quality end-of-life care.

Aim Structurally vulnerable populations, such as people living with intellectual disability, have less opportunity to independently engage in community activities, such as those generated through the Compassionate Communities approach. This research aimed to investigate and develop an evidence-based public health strategy, using an asset-based design, to improve the end-of-life care outcomes of those dying with a disability. Design Staff attitudes to providing end-of-life care to residents were explored through a survey (n=141) while focus groups (n=26) elicited experiences. Integrated data analysis identified sector assets and barriers that impacted upon practice.

Results The process resulted in the development of an asset-based partnership strategy, designed to systematically involve people with disability on matters concerning their own death. At the study site, people with disability were beginning to die at ‘home’ supported by disability staff and palliative care services. Within the disability sector, sustainable capacity and leadership continues.

Conclusion This specific application of public health approaches to meet the needs of people with intellectual disability serves as a case study for other structurally vulnerable populations. Principles include the role of public health to privilege the voice of under-served populations, the methodology to reorient systems that fail them, and the strategies that challenge the systemic barriers that result in poor end-of-life outcomes.

Disability and end of life; perspectives, insights and lived experience
Anna Holliday

Background In 2016, anecdotal evidence suggested Tasmanian disability services were not considering end of life care proactively for people they supported. As a result, people with intellectual disability were being transferred to unfamiliar environments (aged/acute care) at end of life when continuity, familiarity and security are vital.

Aim Li-Ve Tasmania’s foundational research asked Tasmanian’s with intellectual disability, and those who support them, to share their insights, perspectives and experiences regarding end of life and bereavement. It was intended to use the insights to contribute towards the service quality enhancements. Actions Participants (N=110) were people with disability, their families/friends and service providers who contributed via individual interviews or small discussion groups.

Outcomes Findings showed Tasmanians with disability feel confused, uninformed, isolated, and excluded from treatment planning, prognostic conversations, and were not connected with palliative care services in a timely manner. Families and service providers report a lack of confidence and capability to engage in the topic of death and dying. This research highlighted a need for a practical, cultural and systems-based approach to enhancing the opportunities for people with disability to access and participate in palliative care, and ultimately “healthy” end-of-life experiences. Li-Ve Tasmania responded by focusing on community collaboration and capacity building approaches, resulting in significant and sustainable changes within the Tasmania service system for people with disability.

Conclusions and applications to PHPC It’s time for people with disability to be included and valued for the contributions they offer to their own end-of-life care and others they care about. Inclusive palliative care is everybody’s responsibility. Understanding the experiences, barriers and opportunities for supporting people with disability in the context of palliative care is critical. An inclusive Public Health Palliative Care framework offers a systemic guide to improve the outcomes for people with disability at end of life in Australia.

Supporting people with intellectual disability to understand the end of life: The “TEL” website practice example

Dr Michele Wiese

People with intellectual disability have a right to understand the end of life. Unfortunately though, they may be prevented from learning about it, often through well-intentioned but misguided protection. This translates to limited opportunity to care for loved ones who are dying, or to participate in ritual and remembrance. It also means decreased ability to plan for and make decisions about their own dying and death, should they choose to do so.

Our team developed a world-first free online resource Talking End of Life (TEL) …with people with intellectual disability (TEL). It is a knowledge translation of the Australian research study “Dying to Talk”, a project evaluating the effects of teaching disability support professionals to have conversations about the end of life with people with intellectual disability.

While TEL’s primary audience is disability support professionals, it has relevance for health professionals, families and, with support, people with intellectual disability. TEL comprises 12 learning modules, which can be completed independently or as part of a group. Each module includes case studies, activities, and video. All videos feature people with intellectual disability and disability support professionals, and case studies are based on real-life experiences.

TEL aims to give disability support and health professionals the knowledge, skills, and confidence to help people with intellectual disability understand and plan for the end of life.

Conclusions and application to PHPC
Encouraging conversations about the end of life means that when people with intellectual disability gain understanding, they can honour the dying and death of those they care about. It also supports exercise of the right to make choices about the manner of their own dying.

Support needed for a loved one to die at home
Maria Heaton

I am a paediatric palliative care clinical nurse consultant and I had two children with a rare brain disorder called Lissencephaly. My family chose to have both of them die at home in a familiar environment surrounded by family. My daughter died in 2003 and my son died in 2014, the differences in support were immense. There were cuts to the services that were provided so that the support that our family received in 2014 was far lower than the support that we received in 2003. I would like to present our family’s journey and the impact that these funding cuts had on us and on our son. Having a loved one die at home is a highly emotional and stressful time and for the sake of all involved including the person who is dying, it is important to enable them access to the support that is needed in order for this to be well managed. Kiyanda (2015) refers to the need for 24 hour access to support. In a blog about dying at home there is reference to finding a balance in the caring and quality of life interventions that family provide to the person who is dying. It is so important to get the balance right (Seliger 2013) so that a family can feel that they provided the best care possible and for them to manage in the bereaved period.

Reference: • Johnston, J The Memories Project blog 2012 • Seliger, S 2013 Caregiving, Hospice and Palliative Care, Newswire • Kiyanda, B.G.Can Fam Physician. 2015 Apr; 61(4): e215–e218.

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Workshop: International perspectives on specialised palliative care services' engagement with the community: Questioning our assumptions (Misty's Room)
11:30 AM11:30

Workshop: International perspectives on specialised palliative care services' engagement with the community: Questioning our assumptions (Misty's Room)

All authors: dr. Aline De Vleminck, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University
Prof. Carol Tishelman, Research group Innovative care, Karolinska Institutet (KI), Stockholm, Sweden
dr. Maria Lindberg Reinius, Research group Innovative care, Karolinska Institutet (KI), Stockholm, Sweden
Dr. Libby Sallnow, University College London and St. Christopher’s Hospice, London, UK
dr. Sally Paul, School of Social Work and social policy, University of Strathclyde (UoS), Glasgow, Scotland
Prof. dr. Joachim Cohen, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University

Presenting author: Aline De Vleminck

Background: The field of public health in palliative care (PHPC) is based on the premise that collaboration with communities is essential for health-promoting PC. In line with this, there is also an assumption that specialized PC services need to have interactions with the communities that they serve, not only educating the public but also reciprocal learning. Our experiences as an international group working together for several years to develop a PHPC research agenda, have led us to recognize that the adoption of these ideas is context-dependent.

Aims and Interactivity: In this workshop, we will present results of an international comparative survey of specialist PC services’ attitudes and activities with the general public, conducted across Belgium, Sweden and the UK. We are interested in stimulating discussion with participants to question our common assumptions about what palliative care services are already doing in terms of community engagement and further develop the field, with consideration given to the conditions and needs in different contexts. We will intersperse short research-based presentations with participatory research approaches, e.g. world café format, to generate interaction and discussion.

Learning Outcomes: This workshop is based on principles of knowledge exchange with mutual learning for both presenters and participants. After this workshop, we expect to have learned about: • Context-specific attitudes and norms facilitating and hindering PC services’ engagement with the public • Policy and organizational level factors affecting such engagement • Positive examples from different contexts • Different approaches for understanding and further investigating this area • Ideas for positive impact in our national and local environments

Conclusions and Applications to PHPC: As much of PHPC derives from the English-speaking world, the workshop aims to be thought-provoking about how we transfer assumptions, knowledge and experiences regarding community engagement from palliative care services from one setting to another. We will also generate ideas and approaches about community engagement and future research of relevance for a variety of countries and cultures.

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Workshop: Health End of Life Project (HELP): the implementation guide
1:30 PM13:30

Workshop: Health End of Life Project (HELP): the implementation guide

(presenting) Andrea Grindrod; La Trobe University Palliative Care Unit
Bridget Garnder, La Trobe University Palliative Care Unit
Other TBC

Background and Aims
The Healthy End of Life Project (HELP) is the product of a community practice and research enquiry since 2016. A major theme includes the reluctance of carers to ask for, or even accept, offers of help from family, friends and community networks despite rich social networks and a need for support while providing home-based end-of-life care. Ohers’ willingness to provide support was hindered by uncertainty about what to offer and confidence. To develop community capacity for providing end-of-life care, these counter-productive social norms need to change.

La Trobe University Palliative Care Unit (LTUPCU) has over thirty HELP stakeholders using the framework to guide their practice across a range of local and international settings. This workshop will share the emerging central themes relevant to all settings where HELP is being implemented, the varied leading components of the HELP framework that feature differently between jurisdictions, the elevation of certain aspects that serve to fill gaps, and the varied creations of collective HELP resources with partners across a range of locations.

The HELP team will share practical experiences, strategies (both useful and not) and outcomes with workshop participants to make practically accessible steps to promote success and reduce oversights. Participants will engage in group discussion, view AV resources and learn how to facilitate phased community HELP groups.

Learning outcomes
Workshop participants will learn about the key steps that are central to all HELP stakeholder settings. Strategies on how to maintain sustainable community involvement will be covered, as well as the recommended building steps that increase community confidence and capacity around the social norms and asset-mapping.

HELP is considered a Public Health Palliative Care intervention, using an asset and evidence-based community development framework to guide practice and implementation. HELP resources continue to expand with increase uptake and shared learnings.

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

Concurrent Session (Bligh/Phillip Room)

Chair: Arno Maetens

a. Dignity in the last phase of life: Perspectives of migrant patients and their relatives in the Netherlands

drs. Xanthe de Voogd (speaking), drs. Marieke Torensma, dr. Mariska Oosterveld-Vlug, Prof. Bregje Onwuteaka-Philipsen, Prof Dick Willems, dr.Jeanine Suurmond
Affiliation: Amsterdam UMC, Amsterdam

Dignity in the last phase of life: perspectives of migrant patients and their relatives in the Netherlands.

Maintaining and strengthening patients’ personal dignity is a prominent goal of palliative care. However, the perspective on what dignity entails seems to be culturally shaped. Studies from western countries show the importance of autonomy for dignity, while studies from non-western countries show the importance of deepening bonds with family and spiritual peace.

To guarantee palliative care that is responsive to a diverse population, insight is needed in dignity from different (cultural) perspectives. This study explored the perspectives on dignity of patients in the last phase of life with a Turkish, Moroccan and Surinamese migration background in the Netherlands.

Semi-structured interviews were conducted with 19 patients with a Turkish, Moroccan and Surinamese migration background in the last phase of life, 15 relatives and 8 key informants. Interviews were recorded and transcribed and analyzed according to a thematic content analysis.

Results / Findings
Important findings on dignity in the last phase of life for migrant patients: (1) Visits by family and (close) friends and caretaking by family members preserves dignity of patients, however care by family members is not always possible, therefore relatives feel they are falling short. (2) The relation with God/Allah and surrendering to God’s/Allah’s will preserves dignity. Religious practice provides patients with a mental strength, which preserves their dignity. (3) Care with attention, respect, an and indirect communication about the end of life preserves dignity.

Dignity in the last phase of life among migrant patients in the Netherlands is related to care and support by family members and the relation with God/Allah. This is different from a focus on autonomy and it gives health care professionals insight on a dignified end of life for these patients.

b. Advance Care Planning for culturally and linguistically diverse communities in Australia

Dr Julieanne Hilbers (presenting), Anne Meller

A study was undertaken to find out what would support conversations on advance care planning for people from culturally and linguistically diverse (CALD) backgrounds. Semi-structured interviews were conducted with migrants and children of migrants from Chinese and Greek speaking communities to identify what advance care planning conversations were happening and would be appropriate. Health care providers were also interviewed to find out how they currently support these conversations.
This research highlights a need to:
1. Build the death literacy of both the community, and health care providers including professional health care interpreters.
2. Use professional interpreters to facilitate ACP conversations within the clinical interaction.
3. Need for training to support health professionals to have these conversations.
This research was used to inform the development of educational videos for health care workers to encourage them to have advance care planning conversations with people from CALD backgrounds.

c. Palliative and end of life care: Cultural perspectives of patients and carers

Ms Rochelle Leonide (presenting) - Social Work Manager Braeside Hospital
Mr Abdul Shaik - Former OT Manager Braeside Hospital


Background What is the context of this practice activity?
As South West Sydney has one of the highest multicultural populations, interviews conducted with patients of the inpatient palliative care ward aimed to elucidate cultural perceptions and barriers around palliative care and end of life care; as sound understanding of this is vital in order to deliver effective care.
This piece of research has addressed the following recommendations from the New South Wales Auditor-General’s Report re: Planning and evaluating palliative care services in NSW:

Aims What did it set out to achieve?
Recommendation 1: Clearly establish definitions of Palliative Care and End of Life, and stipulate links between the two.
Recommendation 2: Engage family and carers in Palliative Care services.

Actions What did you do?
18 semi-structured interviews were completed with patients, family and carers admitted to the Palliative Care ward at HammondCare’s Braeside Hospital and within the community setting; in order to gain an understanding of the lay and multicultural perceptions of palliative care and end of life care.

Outcomes What did you find out?
Patient’s and carers defined Palliative Care as:
• Cancer
• Hospital care for the sick
• Returning home from hospital
• To recover and go back home
• A place that delivers care to the dying
• Care for the terminally ill
• Care for cleanliness, food, medicine and overall wellbeing.
• Being stable in sickness x 2
• Leads to EOLC
• Same as EOLC
• Listening and talking which are instrumental to treatment
• Ensuring comfort x2
• Dying with dignity x2

Patient’s and carers defined EOLC as:
• Not sure X2
• Unpredictability about how the end will be.
• Taking effect when you become unstable in your terminal illness
• Fatigue and physical changes
• Following on from Palliative Care
• Same as palliative care
• No more hope or help
• Care until death
• Returning to hospital when the “time comes”
• Pain management until you pass away
• “I am going to die”
• Funeral planning to alleviate carers from burden and stress


Cultural Perspectives of EOLC and Palliative Care incl (details to be provided in presentation)
- Australian
- Aboriginal
- Vietnamese
- Indian (Hindu)
- Chinese (Buddhist)
- Turkish (Muslim)
- Italian (Roman Catholic)
- Samoan (Christian)

Conclusions and application to PHPC What are the take-home messages? How do they apply in other settings where PHPC/Compassionate Communities might be?
• Interpreters who were involved in this research project, at times provided their personal viewpoints. They felt they were able to represent the patient and the patient’s belief systems and therefore spoke on their behalf because they were of the same cultural background – cultural background is not however homogeneous amongst those from the same country of birth.
• Timing – discussions around palliative care and end of life care to extract patient’s view point and preferences in relation to these should take place prior to entering the terminal phase – as the ability to clearly communicate wishes can be compromised.
• Advanced Care Planning – expected that this would have been referred to more frequently by those interviewed – emphases importance of education required around ACP and availability professionals to assist with this.
• Communication and Team Work - Effective communication and advanced care planning facilitates intervention provided by healthcare professionals in palliative care and end of life care. This enhances and improves consumer engagement, increasing partnership and establishes shared care agreements between health professionals and family/carers. The involvement of clinicians including allied health in patient care, may be more meaningful as the team will be able to provide a tailored approach in order to achieve the agreed goals of care
• Culture - As Australia’s cultural diversity increases, cultural misunderstandings resulting in the provision of inappropriate palliative and end-of-life care to people from linguistically and culturally diverse backgrounds has the potential to grow. All health professionals must have a proactive engagement in culturally and linguistically diverse issues, and therefore need a level of cultural competence when caring for people from different cultural backgrounds and the knowledge of when and how to consult further cultural expertise when required – and realise the limitations of this aid, as per above.


Background and Aims Why is this workshop important? What does it set out to achieve?
- To achieve awareness re: differing cultural perceptions (which may pose as potential barriers) around palliative care and end of life care – sound understanding of this is vital in order to deliver effective care.
- This piece of research has addressed the following recommendations from the New South Wales Auditor-General’s Report re: Planning and evaluating palliative care services in NSW:
o Clearly establish definitions of Palliative Care and End of Life, and stipulate links between the two.
o Engage family and carers in Palliative Care services.

Interactivity Describe how participants will be included in the workshop activities
Participants will be asked to reflect on own cultural/religious beliefs re: EOLC and Palliative Care and share with the wider group. If they do not feel comfortable sharing with the wider group, it can be written anonymously. Participants will have the opportunity to delve deeper in particular cultural perspectives as I will have prepared generic information about some of the more common cultures.
A mural of cultural perspectives will be created throughout the conference, with participants experiences written on a piece of paper that represents the national flag – there will be materials to be able to draw/create the flag available. An example of this will feature on existing poster with research completed on Inpt. Palliative Care ward at Braeside Hospital.

Learning outcomes What do you expect the participants to learn?
- A range of cultural perspectives re: EOLC and Pall Care; how to ensure practice meeting needs of CALD communities.
- How to respect varying cultural perspectives by providing methods utilised by PC team at Braeside Hospital
- A day in the life of Inpatient Palliative Care Ward, Braeside Hospital.

Conclusions and application to PHPC What are the take-home messages? How do they apply in other settings where PHPC/Compassionate Communities might be?
- General awareness of different cultural perspectives to EOLC and Pall Care – highlighting different expectations and styles of care
- Cultural background is not homogeneous.
- Methods of care when working with CALD pt’s.
- Ideas shared re: all of the above.

d. Death and dying: an Islamic perspective

Mariam Ardati

Responses to the death of a loved one are often shaped by individual cultural and belief systems.
The method by which individuals manage their grief provides an authentic insight into a religion and its people. The Islamic faith presents detailed instructions on the rituals around death and dying, and these traditions and practices are distinct and profound. Muslims believe that human life is a gift from God, which He gives and takes away as He chooses. There is great emphasis on the acceptance of God’s Will with restraint and patience, for the believer does not view death as the end of the soul’s journey but merely a transition from one state of existence to another. According to Islamic tradition, life in this world is the enjoyment of a delusion, a temporary existence that is guaranteed to expire at a divinely appointed time when the body will return to the earth from which it was created.
Following an introduction to Islamic perspectives on death and dying, this presentation will examine the four funeral rites afforded to the deceased in Islam, the soul’s journey after death, and Muslim attitudes to grief and loss. Creating an understanding of Muslim attitudes to death and dying may help medical and nursing staff develop more informed approaches to culturally appropriate therapy models and coping strategies for Muslim patients and their families facing end-of-life care.

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Concurrent Session (Oxley/Evans)
1:30 PM13:30

Concurrent Session (Oxley/Evans)

Chair: TBA

a. Opening the door: Equipping and empowering healthcare professionals to engage young people in gold standard end of life communication

Ursula M. Sansom-Daly (speaking) 1,2,3; Claire E. Wakefield 1,2; Richard Cohn 1,2; Afaf Girgis 4; Antoinette Anazodo 2,3; Pandora Patterson 5,6; Anne-Sophie Darlington 7; Hanneke Poort 8; Abby Rosenberg 9,10,11; Meaghann Weaver 12; Jennifer Mack 13; Joan Haase 14,15; Celeste Phillips-Salimi 14; Karen Wernli 16; Ruwanthie Fernando 17; Leigh Donovan 1,2,18; Susan Trethewie 19; Anthony Herbert 18,20; Douglas Fair 21; Anne Kirchhoff 21,22; Toni Lindsay 23; Fiona Schulte 24,25; Pamela Mosher 26; Ahmed Al-Awamer 27,28; Louise Sue 29; Holly Evans 1,2; Lori Wiener 30

1. Behavioural Sciences Unit proudly supported by the Kids with Cancer Foundation, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia.
2. School of Women’s and Children’s Health, The University of New South Wales (UNSW) Sydney, Randwick, NSW, Australia.
3. Sydney Youth Cancer Service, Prince of Wales/Sydney Children’s Hospital, High Street, Randwick NSW, Australia.
4. Centre for Oncology Education and Research Translation (CONCERT), Ingham Institute for Applied Medical Research, UNSW Sydney, NSW, Australia.
5. Research, Evaluation and Social Policy Unit, CanTeen Australia, Sydney, NSW, Australia.
6. Cancer Nursing Research Unit, Sydney Nursing School, The University of Sydney, Sydney, NSW, Australia.
7. School of Health Sciences, University of Southampton, UK.
8. Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, USA.
9. Palliative Care and Resilience Research, Seattle Children’s Research Institute, USA.
10. Adolescent and Young Adult Oncology, Cancer and Blood Disorders Center, Seattle Children’s Hospital, USA.
11. Division of Hematology-Oncology & Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, USA
12. Divisions of Palliative Care & Pediatric Hematology/Oncology, University of Nebraska Medical Center, USA.
13. Population Sciences for Pediatric Hematology/Oncology, Dana-Farber Cancer Institute, USA.
14. School of Nursing, Indiana University, USA.
15. The RESPECT Signature Center at IUPUI, USA.
16. Kaiser Permanente Washington Health Research Institute, USA.
17. Palliative Care Service, Liverpool Cancer Therapy Centre, Liverpool Hospital, NSW, Australia.
18. Lady Cilento Children’s Hospital, Australia.
19. Sydney Children’s Hospital, Australia.
20. Children’s Health Queensland Clinical Unit, Faculty of Medicine, University of Queensland, Australia.
21. Division of Pediatric Hematology/Oncology, Department of Pediatrics, School of Medicine, University of Utah, USA.
22. Cancer Control and Population Sciences, Huntsman Cancer Institute, USA.
23. Chris O’Brien Lifehouse Cancer Centre, Australia.
24. Division of Psychosocial Oncology, Department of Oncology, Cumming School of Medicine, University of Calgary, Canada.
25. Hematology, Oncology and Transplant Program, Alberta Children’s Hospital, Canada.
26. Hospital for Sick Children, Toronto, Canada.
27. Department of Family and Community Medicine, University of Toronto, Canada.
28. Princess Margaret Cancer Center, Toronto, Canada.
29. Adolescent and Young Adult Cancer Services Team, Canterbury District Health Board, Christchurch, New Zealand.
30. Psychosocial Support and Research Program, Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, USA.

Despite medical advances, many adolescents and young adults (AYAs) with cancer do not survive. Timely, developmentally-appropriate end-of-life (EoL) discussions are critical, and are the recommended standard-of-care. However, many healthcare professionals do not feel prepared or confident to lead these conversations, and little training is available internationally to meet their needs. Understanding and addressing these barriers is a critical next step. This multi-perspective study aimed to: i) examine perceived barriers/facilitators to gold-standard EoL communication in Australia, and ii) benchmark current EoL communication practices with AYAs with cancer internationally, against the recommended standard-of-care.
In Stage 1, we undertook semi-structured interviews with multidisciplinary Australian healthcare professionals, exploring perceived barriers/facilitators to EoL communication, and preferences for improving current practice locally, including implementing advance care planning. Stage 2 employed an online survey of healthcare professionals recruited from several international organisations to map current EoL communication practices against recommended standards.
Twenty-eight Australian healthcare professionals participated (Stage 1). Professionals’ most commonly-endorsed barrier to EoL communication was their own ‘readiness’ (44%), while 29% endorsed good rapport as a facilitator. Professionals felt relapse was the most appropriate time to introduce EoL discussions (40%). Reflecting a whole-of-team approach, professionals were equally likely to suggest that either psychosocial staff (55%) or ‘whoever has the best patient rapport’ (52%) lead the introduction of EoL/palliative care concepts.
Data collection from the Stage 2 survey is underway. Survey findings, as well as next steps for the global collaboration, will be presented at the conference.
Conclusions and application to PHPC
Healthcare professionals need adequate support to deliver gold-standard EoL communication with young people. By benchmarking current international EoL communication practices , and identifying barriers to best-practice, this study will directly contribute to developing sustainable clinician-training resources. These efforts will underpin the dissemination of gold-standard EoL care for all AYAs with life-limiting illnesses.

b. Engaging young adults in hospice care: How to expand community involvement and increase diversity in volunteerism?

Dr. Patrick Schuchter MPH, University of Graz, Austria
(speaking) Assoc. Prof. Dr. Klaus Wegleitner, University of Graz, Austria
Bernadette Groebe MA, Malteser Hilfsdienst e.V., Cologne, Germany
Dirk Bluemke, Malteser Hilfsdienst e.V., Cologne, Germany

In western societies, hospice volunteers have a key role in end-of-life care (EOLC). However, this is, roughly speaking, still a phenomenon of mainly middle-class, retired women. In order to strengthen community engagement and to increase death literacy, hospice care organizations have to promote novel roles of community involvement in EOLC. How to involve young people seems to be a special challenge in this.

A large hospice care provider in Germany started a perennial project, which aims to involve young adults in a number of ways in hospice care.

The project started with two qualitative surveys a) among young adults engaged in voluntary hospice work (18-30 years old / n=23 / average = 26,3 years / 23% male, 77% female), and b) of 39 partner organizations. In a participatory process, this survey serves as impulse to establish 11 local projects (partnerships with schools, businesses, universities, etc.). Interactive forums and diverse types of workshops interconnect young adults, services, communities and (hospice)policies perspectives.

The main motivations of young adults to engage in hospice care are a) to collect and to reflect meaningful life experiences and b) the feeling to make a difference in the life of others with relatively little effort. According to the stage of the lives of young adults, hospice services need to offer new and flexible forms of volunteering as well as opportunities to integrate volunteering into education and personal careers of young adults.

In order to strengthen involvement of young people in EOLC and to foster the diversity in community engagement, manifold new ways of partnerships with the education system should be established. Young people can contribute as “ambassadors” of the hospice philosophy in society and in local communities.

c. Rap Rhythm and Rhyme: The cadence of compassionate youth

Ms Vanessa Eldridge, Manager Day Services, Mary Potter Hospice, Aotearoa.

The ‘Coolest Little Capital in the World,’ Wellington has more café outlets per capita than New York. In 2017 Wellington was rated the best place to live on the planet, by Deutsche Bank. In the same year, it was voted one of National Geographic’s top food cities and, most importantly, the Lonely Planet’s best city to drink beer in. It is a vibrant backdrop for University students and creative young people.

Compassionate Communities work in the city is still in fledgling stages and a more formal ‘coalition of the willing’ is yet to be formed for the region. Mary Potter Hospice has created several innovative community programmes such as ‘Lining Up Your Ducks’, ‘Living Solo’ and ‘Healing Through Storytelling’.

The newest most creative event for 2019 was a loud one. Local rappers and poets gathered to share about loss grief and compassion. Performers were mainly of Māori and Pasifika background. It was an ideal collaboration for youth supported by the public, Victoria University, Wellington’s creative community and New Zealand’s first Hospice.

Vanessa Eldridge (Ngāti Kahungunu and Rongomaiwahine) will share footage of the event and her experience of working with youth and university students. Their vibrant voices will not be forgotten. Vanessa discovered the joy of working with people who make decisions on the spot, mobilise groups quickly, proceed at a roaring pace and can promote the living daylights out of anything.

This is the essence and heart of the compassionate community approach – fostering networks that empower communities and are motivated by compassion and innovation.

d. Preparing children for a parental death

Dr. Gillian Murphy, Western Sydney University, (speaking)
Associate Professor Kath Peters, Western Sydney University,
Professor Debra Jackson, University Technology Sydney,
Professor Lesley Wilkes, Western Sydney University.


Preparing children for parental death.


Palliative care services provide specialist care and support for people experiencing life limiting conditions. The services focus on flexible and patient-centred care, such as: pain management (NSW Health, 2018) and promoting spiritual well-being (Kwan et al., 2019). Supporting carers and families of people using palliative care services is critical, yet there are calls for more family and carer support initiatives (Chung et al., 2019). Additionally, there is a paucity of data about the parental status of people accessing palliative care, particularly those with children under 18 years old. Given this, it is difficult to estimate how many children will experience anticipated parental death, where there is a period of time when a parent is expected to die.


This paper will present findings of a study with adults who experienced the death of a parent during childhood.


A narrative design was used for the study. Themes and sub-themes were established from the data.


Adults who experienced childhood parental death did not receive sufficient information about their parents’ illness and prognosis, even when there was a period of parental anticipated death. Participants felt unprepared, confused and isolated when their parent died. Participants reflected that they felt compelled to seek out information about their parent and their death. Several participants made active efforts to source additional information about the life and death of their parent.


Palliative care specialists have a unique role to prepare and support children when the death of their parent is anticipated. Yet there are some important considerations when engaging with parents and children regarding parental death. These include involvement of the parent who is expected to die and the surviving parent, the method and content of anticipated death messaging, making and sustaining memories, and saying goodbye.


Chung, A., Colier, A. & Gott, M. (2019). Community-led and / or focused initiatives to support family carers within a palliative care context: An integrative review. Palliative Medicine, 33(2), 250 – 256.

Kwan, C., Chan, C. & Choi, K. (2019). The effectiveness of a nurse-led short term life review intervention in enhancing the spiritual and psychological well-being of people receiving palliative care: mixed method study. International Journal of Nursing Studies, 91, 134-143. Doi: 10.1016/j.ijnurstu.2018.12.007

NSW Health. (2018). Palliative care survey. Retrieved from

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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.

Dates: 14, 15 and 16 October.

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

Location: Gladstone Room, Fairmont, Leura

Duration: One hour

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



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Concurrent Session (Ballroom)
1:30 PM13:30

Concurrent Session (Ballroom)

Chair: TBA

a. Using video to explore happiness in residential aged care

Mikkol Macabali, Dr Lisa Williams, Dr Michal Boyd (presenting)

Background: It is well known that the population is ageing. Life expectancy has steadily increased over the last century and as people age they often become more frail and require 24-hour care in Residential Aged Care (RAC) facilities. Little is known about the older persons’ experience in RAC, and particularly about what adds meaning to their lives. In this project we utilised digital stories to involve older people living in RAC as co-researchers to explore what gives life meaning from their perspective. We explored the effectiveness of digital stories with participants to gain a first-hand view of what promotes living well in RAC.

Methods: Four older people living in RAC volunteered to participate in this digital story project. Data was collected through a semi-structured interviews conducted by a student researcher. Participants were asked to reflect on what gave them meaning and promoted happiness in the past and presently. The interviews were transcribed and thematic analysis completed under the supervision of two experienced researchers. Still and moving images were collected and edited into the final video.

Results: Participants provided insight on how to live well as one ages. They shared stories about social connection with other residents, and emphasised the importance of making the most out of their situation together. One participant even suggested a building design to promote resident interaction. There was evidence of reciprocal learning, with the student researcher involving participants in the videography and editing, and participants influencing the student’s self-awareness of ageist attitudes and preconceptions.

Conclusion: Digital story-telling is one way to explore the life experience of older people living in RAC’s. The co-researcher relationship created authentic interactions and offered a creative method to capture participant experiences. The resulting digital stories can also be used to promote an appreciation of older people as valued members of the wider community.

b. What happens when a community development approach is applied to a residential aged care facility, to engage with its local community and attract them inside?

Jasmine Lance

In 2018 Southern Cross Care NSW (SCC) aged care services approached The GroundSwell Project and their partner The Caring at End of Life Research team from Western Sydney University (WSU) to collaborate and create a unique wellbeing program for residents in two SCC facilities.

Taking a 10K diameter around two SCC aged care facilities, a community development worker was employed to develop awareness, opportunities and programs with residents, staff and the local community that encourage social capacity building. Questions were raised of the impact a Cd approach would make in developing connected and engaged aged-care environments, improving death literacy and developing strategies and a service model to duplicate process in other facilities.
Western society’s obsession with youth and productivity separates and categorizes “old” and “ageing” as unattractive and useless. Part of the preliminary research findings of the WSU team identified residents feeling worthless, isolated and depressed. The invitation to share responsibility in end of life care shifts the expectation and frustration in the medical model to a collaborative social model which everyone can take part in shaping. Forging collaborative programs with a whole of community/ network centred approach enables intergenerational engagement, acceptance of our shared experience in life and death and acknowledges seniors as valuable contributors.
De-institutionalizing the mentality and behavior of those within the facility was the starting point. Appreciative Inquiry and Enabling approaches to existing practices were used to raise awareness and help build a reflective and reimagining of facility life, including the duality of “workplace” and “home”.

This presentation shares discoveries and insights realized since embarking on this project and learning what it takes to spear head an aged care facility - steeped in organizational and workplace cultural practices - into a socially engaged environment where meaningful connections determine service delivery; dramatically shifting care workers’ focus from task driven (things) to relational (person centred).

c. Gaps in health and social care provision at the end of life: Opportunities for compassionate communities

Robinson, J. (presenting),¹ ² Gott, M.,¹ Moeke-Maxwell, T.,¹ Frey, R.,¹ Moyes, K.¹ Old, A.,² Raphael, D.,¹ Williams, L.¹ and Njo, H.¹
School of Nursing, University of Auckland, New Zealand¹
Auckland District Health Board, Auckland, New Zealand²

A public health approach to end of life care which focuses on harm prevention and risk reduction for people with life limiting illness has the potential to improve health and well-being at the end of life. A public health lens will be used to explore opportunities to collaborate, connect and partner with communities to better support those living with dying, caring and bereavement in Aotearoa, New Zealand.

To identify gaps in health and social care in the last year of life from the perspectives of bereaved families and consider how these could be addressed by partnering and collaborating with communities to reduce the harms associated with dying, caring and bereavement.
An adapted version of the Views of Informal Carers – Evaluation of Services (VOICES) questionnaire was used to survey 3,932 bereaved families about their experiences of health and social services in the last three months of life.
Nearly half the respondents reported inadequate support from health and social services, 10% received no support at all. Key themes identified from the analysis of open response questions included 1) a lack of social connection for both the ill person and their carer; 2) family/whānau feeling alone in the caring role; and 3) family/whānau experiencing barriers to caring for the sick person in the way they wanted, particularly in hospital and aged care settings.
This study identifies substantial gaps in service access for people with palliative care needs. We will explore how these gaps could be addressed by adopting a public health lens to developing compassionate communities. Our analysis will inform approaches adopted by the tertiary provider who participated in the study to improve end of life care for their patient population, as well as ways to support non-service based responses.

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

Concurrent Session (Club Room)

Chair: TBA

a. What we want: Community perspectives on end of life support in Southwest Sydney

(speaking) Dr Mark Hohenberg, Western Sydney University
Ms Rubab Firdous, , Western Sydney University
Ms Gamze Abramov, Western Sydney University
Dr Genevieve Steiner, Western Sydney University

Sydney’s Macarthur region has an expanding population that is overwhelming local health services. Dementia prevalence is projected to increase by 460% by 2050. Recognition of, diagnosis, and support of those living with dementia as a terminal illness is inadequate now, with little preparation for the tsunami of cases in the future. Understanding community needs helps create meaningful and sustainable healthcare services.
To understand community needs for aged care medical services, palliative care and end-of-life support.
Qualitative semi-structured interviews were conducted at four nursing homes and nine General Practitioner (GP) surgeries. Three semi-structured focus groups were held at Campbelltown, Camden and Wollondilly councils representing community members. Interview notes were taken with focus groups recorded and transcribed. Qualitative analysis was conducted using Quirkos with results categorised thematically. Themes pertinent of end-of-life care were identified using ‘palliative, end-of-life and death’ keywords.
Nursing homes themes (representing 1476 residents) highlighted the need for completing advanced care plans (ACPs) to facilitate effective palliative care; effective family collaboration with healthcare workers was highlighted as critically important. GP (manage 695 geriatric-age patients daily) themes highlighted there was “scope for ACPs to be done in the community”, but it was difficult for GPs to do for several reasons. “Patients often initiates [ACPs]”, but “CALD patients don’t want to discuss”. ACPs were most often completed in hospital with GPs referring to ED for patients nearing the end-of-life. Fifty-seven community residents highlighted fear of hospitals and death but recognised the need for ACPs; frequently not wanting to go to hospital. End-of-life health literacy was poor, particularly in dementia.
This study identified different end-of-life service needs in three key stakeholder groups. Results suggest setting up effective palliative care services leading to community cultural change requires sustainable integrated care.

b. Golden years

Dr Lisa Williams
Professor Merryn Gott

Golden Years
I’ll stick with you baby for a thousand years
Nothing’s gonna touch you in these golden years . . .
- David Bowie

At times fictional stories have been incorporated into the healthcare literature to promote the comprehension of abstract ideas and concepts. Furthermore, fiction has also been included in academic texts in order to inform public policy and enhance learning and teaching. Used in such a way fiction can be helpful for bridging the divide between academic findings and the public’s potentially less specialised grasp of healthcare concepts and outcomes. However, what has not been investigated is how the creative use of fiction might elucidate a programme of palliative care and end of life research, in this instance that of the Te Arai Palliative Care and End of Life Research Group.

In this presentation I will present my short story titled Golden Years and discuss how my involvement in research with Te Arai has led to including within the story findings relevant to our group’s recent projects. These findings include a focus on older people’s frailty, social isolation and loneliness and the particular concerns of LGBTi entering residential aged care.

Artistic value
My artistic practice – in this instance expressed through a short story – provides an example of how storytelling can be used to explore core palliative care and end of life themes and messages

c. Torn from home: Working with the Bosnian community to improve the experience of death and dying

(speaking) Mrs Sharon Hudson- Community Development and Partnerships Lead, Birmingham St Marys Hospice
Kara Fereday- Education Lead- Birmingham St Marys Hospice
Liz Bryan- Director of Education, St Christopher's Hospice
Anes Ceric- Manager, Bosnia and Herzegovina UK Network
Ferid Kevric- Manager, Derby Bosnian Community Centre

Over 10,000 Bosnian refugees came to the UK, mainly in 1995, fleeing from war zones or concentration camps at the height of the holocaust. The Bosnian and Herzegovina UK Network (BHUKN) was set up in 1996 to represent this community at national and international levels providing access to culturally appropriate psychological and social support.
It was recognised by the Community that there were increasing numbers of traumatic deaths, with people experiencing poor outcomes at the end of their lives.
The Community approached St Christophers Hospice to support them to design a programme of education to enable volunteers within the community to be able to support end of life care at home. St Christophers approached Birmingham St Marys Hospice to work in partnership.
The QELCA model of education, practice experience and facilitation was agreed as an appropriate method to support the aims of the programme.
The aim was to empower key members of the Bosnian community to provide emotional support and practical skills to those facing end of life and their families to enable them to have the best possible experience.
A successful funding bid was submitted to Dunhill Medical by the BHUKN. Two facilitators from Birmingham St Marys Hospice were trained as QELCA facilitators and supported in the delivery of the programme by the Director of Education from St Christophers Hospice.
Five Community Development workers from the BHUKN attended the five day QELCA programme which included; setting objectives, practice placement, taught sessions, reflective practice and action planning. The next stage of the programme is six action learning sets supported by the Community Development Lead from Birmingham St Marys.
As a group of people together we have learned so much. Practice placements threw up organisational challenge and the model of educational delivery at the outset may have not given us the time to truly hear and understand the experiences of the Bosnian Community. QELCA supports a facilitation approach but has previously been used to support clinicians in practice, so may need some adaption to be used in a Community Development context. The Hospice are looking forward to the opportunity to learn and understand with the Community in the next stage of Action Learning.

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Concurrent Session (Macquarie)
1:30 PM13:30

Concurrent Session (Macquarie)

Chair: Denise Marshall

a. Memorialisation practices: Changing ways of remembering the dead

Jennifer Lowe (presenting), Dr Bruce Rumbold and Prof. Samar Aoun

Over the last 30 years empirical studies of the experiences of loss, grief and bereavement have proliferated. Despite this, there has been relatively little research into the influence of memorials and memorialisation on these experiences. This study was funded by and conducted in collaboration with the Australasian Cemeteries and Crematoria Association to begin addressing this gap.

The aim of the study was to provide a better understanding of current memorialisation practices, their influence on grief due to bereavement and to highlight key priorities for improving bereavement outcomes.

The core of this qualitative study was a scoping literature review. In-depth interviews with eight service providers from the funeral, cemeteries and crematoria industries then explored responses to key themes emerging in the literature review.

Five primary variables that influence decision-making about memorialisation practices are access, tradition, grief response, body disposal and consumer preferences. There is a clear societal shift from formal means of memorialisation within the cemetery toward informal approaches, through which the deceased is integrated into the everyday lives of the bereaved. Evidence for this shift includes an increase in cremations, a decline in cemetery visitation, the use of online social media platforms as virtual cemeteries and the scattering of ashes in public places that held meaning for the deceased.

The trend toward informal memorialisation practices blurs the roles of community members and formal industry service providers. A public health approach to bereavement support that encompasses both groups is recommended as the most appropriate response to the changing social environment. This approach focuses on building partnerships between industry service providers and other community organisations involved in end of life issues. We propose that redefining the role of formal industry service providers as educators and facilitators, within the ethos of compassionate communities, will support improved outcomes for the bereaved.

b. Enabling communities to support the bereaved

(presenting) Mr Ian Leech, Community Engagement and Supportive Care Manager, St Giles Hospice, Lichfield, UK.

Ms. Nikki Archer, Supportive Care Director, St Giles Hospice, Lichfield, UK.

Bereavement is an integral aspect of palliative care. Within recent literature (Aoun et al, 2015) there has been dialogue regarding the need for service provision to be timely and evidence based, offering a menu of interventions. As an organisation we reviewed our bereavement support and identified limitations.

Our aims were to use a community engagement approach to develop Bereavement Help Points to address the limitations of our service, which would enable us to
• Widen access to bereavement support
• Develop resilient communities
• Broaden the menu of support using the NICE guidance (2003) framework as a basis for service delivery
• Enable bereaved people within our community to support each other

From conversations with bereaved people we developed the vision of bereavement help points based in communities to provide information, advice, social support and a listening ear.

We scoped what was available locally, identifying partners and venues who we then worked with to enable bereaved people to come together within the help points.

We developed the skills and confidence of local people to take on the organisation and facilitation of each help point.

• Open access to 13 Bereavement Help Points is now available, facilitated by local people in their local communities with a connection to the hospice
• 120 people per week currently use the help points, of which nearly 50% are male
• Within the hospice a community engagement approach to bereavement care is core to our service model, creating a better experience for bereaved people
• Bereaved people say the help points offer a safe space to ‘be themselves’
• The model is being adopted by other hospices nationally

Adopting a public health approach to bereavement support through community engagement has enabled us to improve access, choice, efficiency and experience of bereavement support within our community.

c. End of life doulas: Emerging consumer advocates and educators for after-death and funeral practices

Dr Annetta Mallon

What is the context of this work?
My research project with EOL Doulas in four countries, considering com coms, death literacy, and continuity of care for clients.
What did it set out to achieve?
Flinders University (Rawlings, Tieman, Miller-Lewis, & Swetenham, 2018) conducted Australian-only research about EOL Doulas, but from a palliative care volunteer perspective; this work set out to achieve a better understanding of authentic practitioner experiences and perspectives from within the field. As the four English-speaking nations where EOL Doulas are found are included in this project, it is possible to consider country-specific trends and approaches, as well as comparing findings across and between the countries.
What design did you use to undertake research?
Qualitative design (Bryman, 2008) with semi-structured video interviews on Skype, audio recorded. Analysis with thematic analysis approach (Braun & Clarke, 2006).
How did you approach consideration of the theoretical issues?
Feminist theory is preoccupied with inequality (Smith, 1987, 1995) – the Flinders research failed to acknowledge income and fee scales for practitioners. Women historically and globally undertake unpaid labour practices in the workplace as well as the home (Baxter & Tai, 2016; Goodwin & Huppatz, 2010; Horsfall, Leonard, Rosenberg, & Noonan, 2017; Qi & Dong, 2016; Rosenberg, Horsfall, Leonard, & Noonan, 2017), so this research investigated attitudes to paid services/fee structures amongst practitioners. The role of EOL Doulas in helping to create com coms for clients whilst modelling death literacy is investigated focusing on professional identity formation (Wenger, 1998).
My findings will be finalised by the time of the conference.
EOL Doulas generally work in a social model manner, so engaging an EOL Doula means that skills and knowledge will be transferred to those in the com com/family and friend network. A stronger sense of professional identity may be arguably supported via this research project.

Baxter, J., & Tai, T.-o. (2016). Inequalities in Unpaid Work: A Cross-National Comparison. In M. L. Connerley & J. Wu (Eds.), Handbook on Well-Being of Working Women (pp. 653-671). Dordrecht: Springer Netherlands.
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Horsfall, D., Leonard, R., Rosenberg, J., & Noonan, K. (2017). Home as a place of caring and wellbeing? A qualitative study of informal carers and caring networks lived experiences of providing in-home end-of-life care. Health & Place, 46, 58-64.
Qi, L., & Dong, X.-y. (2016). Unpaid Care Work's Interference with Paid Work and the Gender Earnings Gap in China. Feminist Economics, 22(2), 143-167. doi:10.1080/13545701.2015.1025803
Rawlings, D., Tieman, J., Miller-Lewis, L., & Swetenham, K. (2018). What role do death doulas play in end-of-life care? A systematic review. Health and Social Care(2018), 1-13.
Rosenberg, J., Horsfall, D., Leonard, R., & Noonan, K. (2017). Informal care networks’ views of palliative care
services: Help or hindrance? Death Studies, 1-9.
Smith, D. (1987). The Everyday World As Problematic: A Feminist Sociology. Athens GA: Northeastern University Press.
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University of Toronto Press.
Wenger, E. (1998). Communities of Practice - Learning, Meaning, and Identity. Cambridge, New York, Melbourne, Madrid, Cape Town, Singapore, Sao Paolo, Dehli: Cambridge University Press.

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