Concurrent Session (Oxley Room)
Oct
13
3:30 PM15:30

Concurrent Session (Oxley Room)

CHAIR: Kenneth Chambaere

a. Narratives from the field: Using photo-voice to document, explore and advocate for compassionate community work

Prof. Debbie Horsfall

In mid 2018 The GroundSwell Project, initiated two projects to further the emergent international approach to end-of-life community-centred care: one was The Blue Mountains Compassionate Communities project, a partnership with the Nepean Blue Mountains Primary Health Network, to create a more connected end of life network of care in the upper Blue Mountains; and the second was the National Compassionate Communities Practice Forum, where over thirty communities from across Australia applied to be part of the initiative with eight being finally selected. Each of these eight communities nominated two representatives to be community, or citizen, researchers facilitated and mentored by researchers from the caring at end of life team at Western Sydney University. Additionally, each month the community development leader of the forum met with the researchers to critically reflect upon, and analyse, the work being done. The resulting research group, together with the community lead of the Blue Mountains project, were encouraged to use photo-voice data as a way to document, analyse and discuss their work within their communities, in both research meetings and in critical reflections. We found that photo elicited and supported conversations enabled a rich account of peoples lived experiences in implementing compassionate communities. The photos anchored the exploration of their thoughts and conversations became less cerebral as group members became emboldened to speak from their hearts. Nuances of their day to day learning’s became tangible through the metaphor of the image which also offered the group an opportunity to honour their progress so far. Photo-voice offered a platform for critical thinking to be tentatively and generously shared and explored amongst the group simultaneously strengthening alliances. Furthermore, we found that this arts-based method of data collecting instinctively complimented the themes of relationship, connection and community development which were central to the building of these compassionate communities.

b. Towards stringent research in health promoting palliative care: Presentation of the Flanders Project to develop capacity in palliative care across society (CAPACITY project)

Arno Maetens

Background and aims: There is growing awareness that it will not suffice to solely engage more professional caregivers in order to address the future challenges of palliative care. A broad capacity-development in palliative care across society, outside traditional health care services, offers a promising complementary paradigm. CAPACITY is a 2.7 million euro funded research project aiming at developing and evaluating innovative interventions for broad capacity-development around palliative care by better using the existing capacity and potential. Aim of the presentation: This presentation aims to provide a brief overview of the different studies of CAPACITY and their desired societal impact. Additionally, interactions with the public will take place to discuss and learn from their approaches, methods, challenges, etc. Approach and results: The aim of understanding and enhancing assets of individuals, communities and organizations who have the potential to improve the experience of living with and dying from a serious illness is addressed by 6 studies focusing on broad capacity-development in: *Individuals: Study 1 will develop and evaluate an advance care planning tool for people with dementia and their informal carers; Study 2 will develop and evaluate an eHealth application to develop palliative care capacity in people with advanced cancer and their family carers; *Communities: Study 3 and 4 will create and evaluate a compassionate city and a local volunteer model within the compassionate city; *Social care organizations: Study 5 will develop and evaluate a program to increase professional social care capacity in palliative care; *Broader society: Study 6 will develop a public awareness campaign to promote public understanding of palliative care and its benefits. Conclusions and application to PHPC: CAPACITY will add an evidence-base to Public Health and Palliative Care, including Health Promoting Palliative Care. Additionally, new evidence-based models will be developed, aimed at removing taboos and strengthening knowledge and competences around palliative care.

c. Compassion in contemporary society

Dr Bruce Rumbold

Context In recent years, catalysed by public exposure of failures in care and neglect, health systems around the world have renewed an undertaking to provide compassionate care. While the value of compassion receives a warm reception at local community level, as demonstrated in the compassionate communities movement, introducing compassion into the formal practices of social institutions such as healthcare systems is less than straightforward. The policies that direct our social institutions are strongly influenced by globalised neoliberal economic policies characterised by individualism, competition, and greed. Yet for compassion to continue to thrive at the local level we need to develop compassionate social policies supporting interdependence within communities and between nations. For the compassionate communities movement, this requires an intentional and robust partnership between end of life care projects and social movements for equity and justice. Aim This presentation argues that an adequate understanding of compassion has profound implications not only for everyday behaviour of health practitioners but for reforming health systems and also for transforming the societies they serve. Application to PHPC It suggests that the public health resources we need to draw upon are not only the Ottawa Charter and Healthy Settings models embedded in Public Health Palliative Care, but also the more recent social determinants approaches confronting social forces that undermine the views of community represented in these foundational models. The presentation will explore how ideas about social justice, and inclusive equality, are required if a compassionate communities approach is to become socially and ecologically transformative.

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Symposium: What can be done at a national level to encourage more compassionate communities? Reflections from Australia, Canada and Scotland (BALLROOM)
Oct
13
3:30 PM15:30

Symposium: What can be done at a national level to encourage more compassionate communities? Reflections from Australia, Canada and Scotland (BALLROOM)

Bonnie Tompkins, Holly Rankin-Smith, Mark Hazelwood and Rebecca Patterson

Within the field of Public Health Palliative Care, the term ‘compassionate community’ (CC) is used to describe communities of people who feel encouraged to engage with, and increase their understanding about, the experience of living with a serious illness, care, dying and grieving.

Members in a CC understand that it is everyone’s responsibility and recognise that these experiences are a part of everyone’s journey through life. Since we spend about a third of our adult life working, workplaces also need to strive to make it their responsibility. Pallium Canada, The GroundSwell Project (Australia), and Good Life, Good Death, Good Grief (Scotland) each have a national desire to create a cultural shift in the way ordinary citizens respond to death, dying, loss and care. This session will show how three national Not-for-Profits were able to show, not only the need, but the business case for why employers should reorient their environment to be a more compassionate workplace.

Pallium Canada – has created a toolkit that can be used by workplaces to help support both employers and employees dealing with caregiving, dying and grieving. The desired outcome of the approach is to reduce stigma, increase awareness of these experiences and comfortability felt by both employees who are dealing with these experiences and their colleagues who had the desire to support them. They will also share the process taken to create this toolkit and highlight some of the key articles used to validate the need for such a tool. Participants will have a better understanding of the literature, development approach and key stakeholders, overview of the topics covered in final product, and initial feedback from employers and employees.

The GroundSwell Project (GSP)- Reflections on the success and learnings from spending two years actively promoting compassionate at work. The focus has been on supporting workplaces to be better at dying and grieving, which has been both pro-active and re-active. GSP has had some success at responding to an immediate need from work leaders to navigate the immediate challenges of supporting a colleague who has suffered an unexpected loss, however we are still learning what it takes for workplaces to invest pre-emotively. Based on our current engagement with workplaces, we can confidently say that on the whole companies do not know how to respond to an employee who has suffered a death of someone close to them. GSP will share their variety of methods trialed to engage workplaces, such as breakfast meetings, sharing success stories from the workplace, creation of service delivery material and more. They will showcase case studies of corporate executive suffering a perinatal loss and social medial engage around bereavement leave being only 2 days. Participants learnings will include start with your known network, identify compassionate leaders to build on what’s strong in the company culture, workshop material in line with business needs, and consideration of a Compassionate Employer Award.

Good Life Good Death Good Grief - Current findings from the Bereavement Friendly Workplaces project being undertaken by Good Life, Good Death, Good Grief in Scotland. Good Life, Good Death, Good Grief has been working with a small number of workplaces around Scotland to understand and learn from their experiences of bereavement of staff members. The project was born out of initial research into the subject as reported in Good Life, Good Death, Good Grief’s 2018 report, A Road Less Lonely. In the initial stages of the project, Good Life, Good Death, Good Grief met representatives from employers from different sectors and of different sizes, union officials, trade bodies and other third sector agencies to get a broad picture of bereavement in the Scottish workplace. As a result of these conversations, Good Life, Good Death, Good Grief has been collating existing resources and developing new ones to help workplaces to become more bereavement friendly. Work is now underway to help disseminate these resources around Scottish employers. In this session, Robert Peacock from Good Life, Good Death, Good Grief will outline:

  • Key findings from Good Life, Good Death, Good Grief’s research

  • Challenges and barriers faced by employers in providing bereavement support

  • Knowledge gaps and support needs of employers

  • Resources that have proven to be helpful for employers

  • Learnings from working with employers on this topic

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

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Concurrent Session (AUDITORIUM)
Oct
13
3:30 PM15:30

Concurrent Session (AUDITORIUM)

CHAIR: Aileen Collier

a. What does it take to keep us connected? A community cultural development project in an acute palliative care setting

Niki Read & Dr Jennifer Wiltshire

The nature of hospital-based health care often means people become disconnected from their families and friends, and clinical referral processes lack supported transitions through diagnosis, curative care, palliative care, death and bereavement. It is our social networks that sustain and accompany us through these experiences and yet health care provision is designed without the patients community in mind. Liverpool Hospital Palliative Care ward and The GroundSwell Project have partnered together for 4 years under an MOU that puts people and their communities at the heart of the ward. The ‘Ward without walls’ project, built on public health palliative care principles, recognises that by getting involved in end of life care in inspiring and life affirming ways people and communities can learn about ageing, chronic disease, dying and death care. The aim is to reduce barriers, build capacity in community and enable palliative care services to be a part of the community, not separate to it. Over 50 people and 15 different local organisations, social groups, cultural facilities, schools and youth councils etc have been invited to contribute to life of the ward through attending informal events, and the sharing of meals. Maps of who and what matters to staff, patients and communities are being created and displayed, and local artists are in residence on the ward to create legacy artworks with patients, all of which highlight that we are all more than our disease, diagnosis or job title and invite contribution and connections between patients, visitors and staff. The insights of this project serve to demonstrate what role beyond clinical care an acute palliative care service might have, providing real life evidence of what works and what the challenges are. This will support other palliative services that may be looking to forge partnerships with communities using community development strategies.

b. Heartache and Healing: holistic approaches to care at a Queensland children’s hospice

Elham Day

As the only Children's Hospice in Queensland, Hummingbird House has provided world class short break stays, symptom management, end of life care, and care after death to well over 200 families across the state since opening in 2015. Within a holistic model of care developed in partnership with local and international practitioners, Hummingbird House offers culturally sensitive support to children, young people, families and their community support networks. This presentation will speak to specific areas of innovation in care from across the spectrum of paediatrics, including a specialist perinatal care pathway for families that receive a palliative care diagnosis prior to birth. The team will also share examples of how the hospice service actively supports a growing number of families who are referred to Hummingbird House after a child or young person has died. This particularly innovative approach to hospice care draws on traditional approaches to family led death care, and draws on a compassionate communities model - situating parents, carers and families as active participants in all aspects of care; crafting rituals and memory making as part of caring for a young person or baby’s body; in preparation for funeral ceremonies, burial and cremation; as well as on into bereavement. In collaboration with families, Hummingbird House has documented a number of case studies which speak to the positive and healing impact of this approach on their ongoing experience of bereavement, and how such community focused approaches to care build capacity in families’ existing networks and circles of care.

c. Theorizing health-promoting nursing practices in EOL care through the capability approach

Jerome Leclerc-Loiselle

Background: Nursing care in the end-of-life (EOL) context is frequently criticized for providing a technicized, standardized and individual-oriented approach. By lacking the recognition of individual liberties to act, nursing care often undermines the expression of the dying’s autonomy. With a health-promoting aim, a change is necessary to redefine individual autonomy at the EOL, within a model that recognizes agency. Aim: By postulating the relevance of the Capability Approach (CA) to support this reflection, this presentation aims to propose a renewed conception of nursing practice. Design: Through a case story inspired by an actual nursing practice in an EOL context, a proposal for health-promoting nursing practice, theorized by the CA will be made. The CA developed by Sen and Nussbaum aims to centralize action around the development of opportunities and individual freedoms to enable the person to live the desired life. The CA allows us to represent the professional practice around the mobilization of resources from the individual and the environment. Results: This case story will offer a health-promoting perspective of EOL nursing practice by theorizing care in support of what individuals are able to do and be. This theoretical proposal, by linking the individual, social and environmental dimensions that constitute the practice, puts forward an intersubjective action for the purpose of health promotion. Discussion: Through the crossing of individual, social and normative aspects that CA intends, this proposal offers a new avenue to conceive and guide care around an ideal of "right to health", even in the last moments of life, shaped in what individuals value for themselves.

d. Overcoming barriers in palliative care using expressive arts therapy

Preeya Desh

Originality: We at Wabi Sabi Health realised that there is a stigma around accessing mental health care and the use of psychosocial services in patients with palliative care needs in India. In particular, the marginalized- woman, children, LGBT, and handicapped- did not have a way to get medical care that was more than pharmaceutical symptom management. We have partnered with two hospitals in India and are training their clinicians to provide medical and psychosocial care, simultaneously using art and music therapy. Contextualised- We are building up compassionate communities by first providing expressive art therapy to the nurse specialists that provide home bedside palliative care. They are participating as well as learning how to use simple methods using expressive arts that can cross barriers and make it less threatening to participate in therapy. Artistic Value- One major strength is that this expressive art therapy integration is lead by doctors, which in India, offers more validity. This model is a powerful tool to connect people to the universality of music and art and use it for the alleviation of pain and other distressing symptoms. India is a country rich in the tradition of art and music. It makes it that much more important to use that for the patients and caregivers that need it the most.

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Concurrent Session (Norman Lindsay)
Oct
13
3:30 PM15:30

Concurrent Session (Norman Lindsay)

CHAIR: TBA

a. How telephone support groups create a compassionate space to enable expressions of grief and loss for people affected by cancer

Kim Pearce

Background: Cancer Council is a community funded organisation. One of its priorities is to empower and support people affected by cancer, so that no one need face cancer alone. The Telephone Support Group (TSG) program is one of the peer support programs, designed to address this priority. Research is clear that participation in a support group is beneficial for people affected by cancer. This includes people with a cancer diagnosis, carers and people who are bereaved1. Aims: The TSG Program objective is to bring together people with metastatic and poor prognosis cancers, carers and those who are bereaved, to provide them with a safe compassionate place to connect, share thoughts and fears about end of life and to explore grief and bereavement. Actions: The TSG Program utilises a Mutual Aid/Peer Support model. Facilitators are trained health professionals, acknowledged as providing positive benefits to participants2. The facilitator role is to provide a safe and trusting place for participants to speak about managing their disease and facing end of life. Patient groups and Carer groups are held twice monthly. Bereavement groups are a six-session closed format. This program connects people, at no cost to them, who live in isolation or rural and remote Australia. They just need access to, landline or mobile telephone. Outcomes: Monitoring is ongoing and consists of measuring the day to day activities of the program, ensuring accountability. Quantitative and qualitative form data is collected through surveys, open ended questions and/or interviews. Conclusion: Psychosocial and emotional benefits are gained and normalised through participants talking in a safe space about the realities of end of life. Participants learn the practicalities of managing their disease, treatments and relationships. Cancer Council has a unique opportunity to create this space to enable participants to feel heard and supported while exploring their grief. Footnotes: 1.Ussher, Jane, et al. (2006). What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Social Science & Medicine, 62, 2565-2576 2.Dunn, J., et al (2003). A review of peer support in the context of cancer. Journal of Psychosocial Oncology, 21, 55-67

b. The Belgian model of demand-drive palliative care (PC) with embedded assisted dying (AD)

Jan Bernheim


At this time 250 million people live in jurisdictions having de-penalised AD. In AD-permissive environments PC organisations have three options: exclude AD from PC, leave involvement in AD to individual caregivers’ conscience, or, as in Belgium, embed AD in PC. Individual caregivers must always be free to decline engaging in AD. However, public-health issues arise if in AD-permissive environments PC excludes AD. 1) Intellectually, some of the essentialistic objections to AD embedded in PC are problematic. Eg. the historical origins of PC and definitions of PC by intention not to delay or hasten death can hardly be canonical, if only because history evolves and intention is a poor criterion. Ethically, the PC tenet of compassionate patient-centredness is overruled when caregivers prioritise personal or doctrinal values over the patient’s. 2) Empirically, over 70% of cases of AD are preceded by professional PC. In Flanders, AD occurs three times more after a professional PC trajectory than after non-specialised end-of-life (EOL) care. The Belgian model of ‘integral EOL care’ consists of legally ordained, demand–driven universal access to both PC and AD. This model was in 2015 largely emulated in Québec’s comprehensive end-of-life care bill. Pragmatically, if in AD-permissive jurisdictions AD is excluded from PC and performed only in settings that are less competent for EOL care, this may entail adverse public-health consequences. First, patients who desire the possibility of AD may tend to shun professional PC and hence not receive optimal EOL care. Second, AD would likely be less practiced in a spirit of ‘total care’. Thus, the quality of all EOL care would stand to decline. Conclusion: If PC organisations do not with open minds confront these ethical and practical issues, they may be marginalised by societal developments and the overall quality of EOL care may suffer.

c. Sound therapy as an effective option for the needs of the palliative care patient

Rafaele Joudry

Background Sound Therapy, developed by ear specialist Dr Tomatis, assists hearing, sleep, stress, mood, anxiety, pain, and general wellbeing (Tomatis, 1991). Classical music is progressively filtered using specific algorithms to activate the auditory system and enhance brain plasticity. The patient then listens to the filtered and activated sounds through headphones. Aims This preliminary study aims to review existing literature and case studies on how Sound Therapy can be used to assist people at the end of life. Actions A review of 111 papers on Tomatis Sound Therapy identified 3 which addressed degenerative illness and 6 on anxiety which were reviewed in detail. From my own service, over 100 statements will be analysed from people with degenerative illness or frail ageing who have used a portable, home-based version of Sound Therapy. Outcomes The literature review provided evidence for the effectiveness of Sound Therapy for degenerative illness. Examples included relief of chronic pain, reduced stress, an improvement in the quality of sleep and enhancement of cognitive function (Jinjing 2016). Recent understanding of the vagal nerve (Porges, 2011) provided an up to date neurophysiological explanation for these beneficial effects. Analysis of individual cases is still in progress but evidence suggests that home-based Sound Therapy provides a simple, treatment which can help to meet emotional needs of dying persons, while requiring minimal time and input from carers. Conclusions and application to PHPC: At end of life most people are cared for in their homes and indeed would like to die at home. Sound therapy can assist with emotional support which makes home-based caring easier for both the person who is dying and the carer.

d. When saving lives is your business: Preparing paramedics for situations where resuscitation is unsuccessful, unwarranted or unwanted

Natalie Anderson

Background: It is increasingly recognised that resuscitation efforts are sometimes unwanted or inappropriate, and often unsuccessful. NZ paramedics are authorised to withhold or terminate resuscitation in accordance with guidelines, then formally verify death. Research to-date has focussed on optimising survival from cardiac arrest and little is known about the experience of paramedics, family or other bystanders when resuscitation efforts are withheld or terminated. Aims: To explore paramedics’ experiences of withholding or terminating resuscitation and implications from a public health palliative care perspective. Design: A mixed-methods sequential exploratory research project including a systematic review of the literature, interviews with ambulance personnel, focus groups with clinical and peer support staff and an online survey of graduating paramedic students. Results: Paramedics respond rapidly to patients with life-threatening conditions, and ‘default’ to highly-rehearsed resuscitation efforts when attending a patient in cardiac arrest. Patient death can be emotionally, clinically and ethically challenging – even for highly-experienced paramedics. They can feel pressured by family members and bystanders who have called an ambulance expecting or even demanding resuscitation efforts – and success. Patients may not have discussed or documented their wishes, and family members can be unprepared for their death, even where there was significant evidence of life-limiting illness. Implications: Increasingly prepared by degree-based education, paramedics are trained to save lives and manage illness and injury. They are also key providers of care to patients dying in the community, often tasked with breaking bad news to family and supporting those involved in unsuccessful resuscitation efforts. With promotion of bystander CPR and public access to defibrillators, members of the public may also ‘default’ to commencing resuscitation efforts, with an expectation these will revive the patient. Greater public awareness of the limitations of resuscitation and availability of documented patient wishes in the context of expected death could facilitate paramedic resuscitation decision-making.When saving lives is your business: Preparing paramedics for situations where resuscitation is unsuccessful, unwarranted or unwanted

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Workshop: Maawandoonan: Integrating philosophies of care in the development of culturally relevant education (MISTY'S ROOM)
Oct
13
3:30 PM15:30

Workshop: Maawandoonan: Integrating philosophies of care in the development of culturally relevant education (MISTY'S ROOM)

Holly Prince

Background/Aims: There is a need for accessible, culturally relevant palliative care education for Indigenous communities that is reflective of the physical, cultural and social care needs of communities; however, there is very little knowledge to specifically inform palliative care curriculum development for Indigenous people. This interactive workshop will present two curricula and a resource manual grounded in the concept of "two-eyed seeing" and in the Indigenous wellness framework to address this gap in knowledge. Interactivity: The workshop will begin by immersing participants in the educational training by engaging in a traditional opening of the workshop, including a ceremony to ground participant’s experiences and stories. A brief lecture will present the overall goals of the palliative care training initiative followed by highlights of experiential activities located within the curriculum. Narratives from a workshop facilitator will also be presented that describe experiences in delivering the curriculum. A group discussion will follow to highlight the applicability of the training delivery in supporting palliative care capacity development in Indigenous communities. Learning outcomes: Participants will understand how palliative care training can support the development of palliative care capacity in First Nations communities. They will learn about the process undertaken by the education team to develop culturally relevant palliative care training, emphasizing the importance of local Elders and/or Knowledge Carriers and grounding the training in community’s experiences, culture, values and beliefs. Lastly, they will be introduced to a new culturally relevant resource manual called Preparing for the Journey: Care for First Nations Community Members who are Seriously Ill designed to provide practical tools and resources for care at the bedside. Conclusions: This workshop discusses the significant contribution that “two-eyed seeing” can have on the end-of-life care of Indigenous people by intersecting both Indigenous knowledge and Westernized palliative care philosophy. The workshop seeks to engage palliative care educators in a dialogue with Indigenous communities in the creation of culturally relevant curricula to support capacity for care at end-of-life.

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Concurrent Session (Bligh/Phillip Room)
Oct
13
3:30 PM15:30

Concurrent Session (Bligh/Phillip Room)

CHAIR: Kate Munro

a. How to promote social connection: The views of culturally diverse older people

Prof. Merryn Gott

Background: There is mounting evidence that social isolation and loneliness are significant concerns within the context of ageing, dying and grieving. However, the views and experiences of older people are rarely privileged within discussions of ways to support social connections within communities of place, identity and interest. Aims: To explore understandings and experiences of social isolation and loneliness among diverse cultural groups of older people living in Aotearoa, New Zealand and identify factors they identify as promoting social connection. Design: We used culturally appropriate methods to interview 44 Māori, Pacific, Chinese/Korean and NZ European older people who experienced loneliness and/or social isolation. In addition, three focus groups were held with 33 older people in line with cultural preference to discuss this sensitive topic collectively. Thematic and narrative analyses were undertaken. We drew on participants’ narratives to produce an animation which aims to promote understanding of loneliness and social isolation within New Zealand communities. Results: Participants demonstrated sophisticated, and culturally situated, understandings of both loneliness and social isolation. For example, Korean and Chinese participants linked their stories of isolation with difficulties of integrating into New Zealand society, multiple Pacific participants contrasted their supportive family structures with those of NZE families, and Māori participants discussed ‘mokemoke’ (fretting, yearning, loneliness) in relation to a sense of loss for their tūpuna (deceased elders) and a way of life no longer available to them. Factors participants identified as facilitating or inhibiting social connection ranged from the individual (for example, health-related) to structural (for example, availability of public transport). We will screen the four minute animation, developed in response to participants’ call to challenge the stigma related to loneliness within New Zealand communities. Conclusions and application to PHPC: Promoting social connection has been identified as key to developing compassionate communities. We foreground the views of a culturally diverse group of older people as to how this may be achieved.

b. Ctrl Alt Delete

Dawn Pegram and Mo Blishen

Background: To look at the power shift in who controls the care of a palliative patient. Aim: We intend to look at who controls your care when you are dying (power) - Is it the family – the person who holds EPOA? - Is it the medical profession – Hospital or hospice, Doctor or Nurse? - Or is it the person who is dying? Actions: Researched and reviewed case studies. Outcomes: Has the balance of power changed? The take home message is that one model doesn't fit all and that dying is a very individual process.

c. Improving palliative and end of life care for people with severe mental illness and incurable conditions

Dr. Jed Jerwood

Background: People with severe mental illness (SMI) have a life expectancy of up to 20 years less than the general population. They also experience poor physical health and higher rates of many life-limiting conditions. Research on the specific needs of people with SMI in palliative and end of life care is extremely limited and very little concerns contemporary clinical practice. Aims: 1. To carry out a series of focus groups with clinical staff from both mental health and palliative/end of life care (PEOLC) settings exploring the barriers to care. 2. To carry out a interviews with patients (and carers) who have both SMI and an incurable condition to better understand their experiences in PEOLC. 3.To use the findings to inform the co-creation of the concept of a clinical resource to improve the confidence and competence of clinical staff with the aim of improving the PEOLC experiences of a significantly marginalised patient group. Design/Approach: Focus groups, interviews and a collaborative, creative co-creation process were adopted to collect data. Thematic analysis of the different sets of data and an iterative analysis throughout the co-creation process were carried out. Findings: The study found consistent themes which included the importance of patient and carer voice, the need to build confidence of clinical staff when working with people with SMI, the desire and ability of people with SMI to participate in palliative and end of life care planning, the need for better partnership working between clinical services, patients, families and communities. The co-design process highlighted the need for a resource which improves care through stories and narrative as opposed to guidance, policy or protocol. The concept for the resource will be presented during the presentation. Conclusions and applications to PHPC: This study offers novel understanding of the views, experiences and expectations of a group of patients often marginalised and excluded from palliative and end of life care. The findings offer valuable insights into how access to, and quality of, palliative and end of life care can be improved for people with SMI. The findings are of interest to researchers, clinicians, policy makers, communities, patients and carers.

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Workshop: Compassionate choices: Person first approach at end of life. Solutions to a public health challenge (MACQUARIE ROOM)
Oct
13
3:30 PM15:30

Workshop: Compassionate choices: Person first approach at end of life. Solutions to a public health challenge (MACQUARIE ROOM)

Dr Stephen Ginsborg

Presenters

Kate Maguire Carer, Lived Experience

Dr. Stephen Ginsborg; GP, Board member CCNB and SNPHN

Marika Kontellis; Manager, Community and Service Development CCNB

Anna Buddo Manager Services, CCNB

Interactive Workshop What if we could create care choices at the end of life? What if a dying person had their family, friends working alongside their GP, a community nurse, a trained volunteer and a support worker? What if people felt confident to support their loved one at end of life? This interactive workshop will encourage participants to explore these questions and envision a model in their own context. A model of care where universal access to palliative care choices is possible. The presenters will speak about the barriers to GP engagement and lack of GP engagement. An innovative and sustainable person first business model will be proposed. Presenters will share their “work in progress” local model that is based on a person first, compassionate community framework. The model positions the person as the expert in their own care and the GP as an enabler, building the care confidence of family, friends, volunteers and support workers. A Care Coordinator brings it all together providing advice, support and quick response at their time of need. Participants can expect to better understand how this model to palliative care, end of life care and bereavement aligns with current and emerging Australian public policy and funding . Using a SWOT Analysis, participants will work to identify the barriers to delivering palliative care in their own community and come away with practical tips for redesigning or improving palliative care choices in their own community. Compassionate Communities; Final Report 2018 ,NOUS Group

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Concurrent Session (EVANS ROOM)
Oct
13
3:30 PM15:30

Concurrent Session (EVANS ROOM)

CHAIR: Julianne Hilbers

a. More than a hospice in the home service

Deirdre Bidmade

The ‘Warrnambool model’, is a not for profit organisation bringing together volunteers to care for those nearing the end of their life who want to die in their own homes, promoting death literacy and developing compassionate communities in end of life care. A small team of people had a dream to build a Hospice, but with no likelihood of government funding and too small a community to expect to raise the funds needed to sustain it they came up with an in home model of care. The End of Life Preparations workshop fills another gap in the community, providing knowledge around planning for your end of life journey. Monthly workshops include information on what happens when you receive a diagnosis of a life limiting illness and hints on home care, advance care planning, funeral and death plans - essentially how to get all in order so you can spend your time living well until you die. After attending the Compassionate Communities symposium in 2017 we realised we are missing community connectors and we feel since joining the NCCF project as a Groundbreaker has helped us connect with organisations working in similar spaces. Our hope is to have our city commit to be a compassionate community in end of life care and written into our city’s planning strategy. We are working towards a ‘space’ where information about the network of services available is created in some form. Take home messages- work with your community, planning took over six years, success is built on the great commitment of the committee, recognising the importance of management and coordination as the key area of financial investment and the utmost need to support the volunteers, creating a strong network and the flexibility to respond as needs arise.

b. Walking beside - End of life doula model of care

Harpreet Kalsi and Helen Callanan

Professional, committed and skilled End of Life Doulas are increasingly supporting the needs of the whole person at end of life. Their role is non-medical – and one of empowerment, choice and connection. Utilising a consultative co-design research approach, the “End of Life Doula Model of Care” was constructed as a framework demonstrating: • Who is an EOL Doula? • What do they do? • How do they work? • How do EOL Doula services fit within current models of care (including partnerships, early intervention, identifying co-morbidities) • A collection of case studies that outline the physical, psychological, social, spiritual and practical aspects that EOL Doula’s have facilitated with their clients The EOL Doula navigates and develops cohesive partnership with both formal and informal caring networks; demonstrating that it takes an integrated team, a village – (family, friends, palliative care, allied medical/health practitioners, aged care, complementary therapists, religious/spiritual support, neighbours, respite, council, pharmacist, funeral services) to support implementation of choices made by those at end of life. The exploration of the role of EOL Doula in existing “Models of Care (MOC)” in the palliative space, such as the Palliative Care MOC and the Aged Care MOC, has been vitally important in understanding the benefits inclusion of an EOL Doula can make at end of life. This model shows the integration, intersections and collaborations that already exist as EOL Doulas “walk beside” and bridge many of the gaps in service provision, education and care at end of life that have resulted from the growing demand for services. The “End of Life Doula Model of Care” also provides a platform for palliative care, health and aged care professionals to advocate for additional services to support clients to build capacity. This contributes to the wellbeing of the whole person, resulting in empowered enactment of choice.

c. Research end of life (EOL) doulas and their practices: an international perspective

Dr Annetta Mallon

conducted research interviewing EOL Doulas in four countries, asking about their experiences of creating and maintaining compassionate communities (#ComCom) for themselves and their clients, the role of death literacy in their work, and how they as EOL Doulas offer continuity of care for clients. As this project includes Australia, Canada, the UK, and the USA it is possible to consider country-specific trends and approaches, as well as comparing findings across and between the countries. Flinders University conducted Australian-only research about EOL Doulas, but from a positioning of EOL Doulas as unpaid care volunteers; contrary to this position, EOL Doulas themselves consider themselves as a separate field of workers, one with skillsets worthy of recognition in the form of payment. The qualitative semi-structured interview data sets I gathered were analysed using thematic analysis, and the findings represent a more comprehensive understanding of authentic practitioner experiences and perspectives from within the field. In addition to acknowledging a desire for more standardised income and fee scales for practitioners, the research found that death literacy places a prominent role in the work of EOL Doulas, and that #ComCom for and amongst practitioners are considered as important as the #ComCom networks around their clients. Healthy self-care is being taught in several courses in different countries, but is clearly emergent amongst geographically close practitioners as well. In terms of continuity of care and EOL Doulas, findings between countries is generally consistent, although subject to local and national government frameworks, which is sometimes a point of frustration. The importance of the social model aspect of EOL Doula work was another consistent theme in terms of supporting death literacy throughout social networks and #ComComs. A sense of professional identity may be discerned from this research.

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Workshop: Safeguarding the end of the rainbow (CLUB ROOM)
Oct
13
3:30 PM15:30

Workshop: Safeguarding the end of the rainbow (CLUB ROOM)

Samantha Edmonds

There is a general invisibility of LGBTI elders within mainstream society and within LGBTI communities. In addition, LGBTI elders have experienced prejudice and discrimination over the life course, from government, agencies, organisations, health providers, businesses, families, friends, and individuals. These experiences cause LGBTI elders to: remain in or return to the closet; be reluctant to reveal their sexual orientation or their intersex status; feel unable to affirm their gender identity or express their gender freely; be afraid to disclose their gender history or experience when relevant; or be hesitant to confront stereotyping about who they are and what they need. Thus, many LGBTI elders have significant fears about palliative care. They are concerned that service providers and health and other professionals will be indifferent to their sexuality and gender identity, or, at worst, actively hostile. They worry that palliative care services are simply ‘not for them’, or that they will receive worse treatment than their non-LGBTI peers. This workshop will discuss who L,G,B,T and I peoples are and the issues that affect these distinct populations, and why we need to address their genders, bodies, relationships, and/or sexuality differently. It will demonstrate why we need to move from ‘but we treat everyone the same” to “how can we meet each person’s individual needs”. It will explore the learnings we have gained on what makes palliative care culturally safe for each group. This session will engage participants in how to respond to the unique needs of each of L,G,B,T, and I peoples, reflect critically on their own practices, and plan genuinely inclusive services that meet the distinct, and sometimes overlapping needs, of each group. It will provide practical examples and models of how aged care services and the sector can genuinely respond in a way that is inclusive of this diversity.

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10 years of Public Health Palliative Care: critical reflections and questions as we move into the next decade (BALLROOM)
Oct
13
2:15 PM14:15

10 years of Public Health Palliative Care: critical reflections and questions as we move into the next decade (BALLROOM)

Chair: Prof. Samar Aoun

Dr Kerrie Noonan, Dr Libby Sallnow, Prof. Allan Kellehear and Dr Suresh Kumar

In the natural life cycle of an idea, theories are born, and practice is tested and retested. Some ideas take off and others lose energy or fail to create change or the uptake needed make a real impact. Many of us know how tough it can be to embed public health ideas within end of life care, to rally support from our managers, colleagues and funders and to understand the impact of these ideas in practice. Nevertheless, after a decade of conferences, the public health palliative care movement continues to build momentum and grow.

This plenary session led by Kerrie Noonan, Libby Sallnow and Heather Richardson will critically reflect on developments since the 1st international conference bought together visionaries, aspirant practitioners and other curious folk to the Institute of Palliative Medicine in Kerala. We will examine learning across the five international conferences to contextualise developments, directions and tensions in the movement.  We will be joined by Allan Kellehear and Suresh Kumar to reflect on the emergence of the movement, their early ambitions and aspirations and what direction it may take over the coming decade.

How is success measured and how successful has this movement been? How many people have adopted these ideas, how ‘scalable’ are our innovations, how much funding has it attracted, what change has is led to and what evidence have we produced? Is PHPC creating the change we expected? Have we just begun? And how do we “push on” even if the work is hard, takes a long time or is seemingly not “sexy” enough for funders? We will invite delegates to reflect upon their role in the future of PHPC over the next decade and beyond.

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Session 2: Starting a Community Coffin Club: A compassionate community response - it only takes one coffin (CLUB ROOM)
Oct
13
10:45 AM10:45

Session 2: Starting a Community Coffin Club: A compassionate community response - it only takes one coffin (CLUB ROOM)

Starting a Community Coffin Club: A compassionate community response - it only takes one coffin

PLEASE REGISTER BEFORE CONFERENCE

A rare opportunity to learn from Tasmania's Community Coffin Club. Learn how to make a coffin or casket for yourself or a loved one.

Tasmania's Community Coffin Club (CCC) are doing something really special: teaching people how to make a coffin or casket for themselves or their loved ones. This workshop will provide you with some background information about the CCC: you will leave with some knowledge of the CCC, including how they got it off the ground and some experience of their regular activities. Sure to be a fantastic way to start your PHPCI Conference experience.

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Bringing Grief work to work: Staff and volunteer experiences of grief and loss (evans room)
Oct
13
9:30 AM09:30

Bringing Grief work to work: Staff and volunteer experiences of grief and loss (evans room)

Bringing Grief work to work: Staff and volunteer experiences of grief and loss

PLEASE REGISTER FOR THIS SESSION

Presented by Elham Day

This experiential workshop will explore reflective and creative ways for staff and teams working in end of life, palliative care, and death care to tend to their experiences of grief and loss.

While there are a range of formal and informal grief support available to the majority of clients and families receiving palliative care – yet too often the additional (and inevitable) grief and bereavement experiences of staff, volunteers and support workers in palliative care are minimised or neglected.

Commonly, staff are encouraged to practice ‘self care’ to manage their grief. While an individualistic approach to 'managing the symptom of grief' may assist some, this workshop will advocate for the benefits of teams and organisations sharing responsibility for co-creating spaces where grief can be tended to, shared and experienced collectively – as has been the norm for the majority of millennia that humans have been grieving loss.

Beginning with reflections from staff at an Australian children’s hospice who have sought to embed the cultivation of a personal and collective relationship with grief into the organisation’s emerging culture, this workshop will be an invitation for discussion, imagination and wondering about how we may nurture and tend to grief in our work teams and communities. Drawing on practice wisdom, research and documented experiences, participants will leave with a number of tools and resources to return to their organisations and communities.

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Session 1: Starting a Community Coffin Club: A compassionate community response - it only takes one coffin (CLUB ROOM)
Oct
13
9:00 AM09:00

Session 1: Starting a Community Coffin Club: A compassionate community response - it only takes one coffin (CLUB ROOM)

Starting a Community Coffin Club: A compassionate community response - it only takes one coffin

PLEASE REGISTER BEFORE CONFERENCE

A rare opportunity to learn from Tasmania's Community Coffin Club. Learn how to make a coffin or casket for yourself or a loved one.

Tasmania's Community Coffin Club (CCC) are doing something really special: teaching people how to make a coffin or casket for themselves or their loved ones. This workshop will provide you with some background information about the CCC: you will leave with some knowledge of the CCC, including how they got it off the ground and some experience of their regular activities. Sure to be a fantastic way to start your PHPCI Conference experience.

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Research and Evaluation for early career researchers and practitioners (Norman Lindsay))
Oct
13
9:00 AM09:00

Research and Evaluation for early career researchers and practitioners (Norman Lindsay))

This workshop is designed to support practitioners and early career researchers in choosing methods for public health palliative care research and evaluation. It is an opportunity to learn from each other of the challenges encountered in this type of research, and strategies to plan and implement sound research. It is interactive, so participants are asked to bring existing or proposed research information or even a good idea for future research and evaluation. The workshop is facilitated by Prof. Samar Aoun and Dr John Rosenberg, both experienced researchers and scholars in the Public Health Palliative Care field.

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Installation: Vigil (Secretariat Room)
Oct
13
8:00 AM08:00

Installation: Vigil (Secretariat 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 Rachel Burke, Jane Murphy and Thembi Soddell.

Dates: 13, 14 and 15 October.

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

Location: The Secretariat Room, Fairmont, Leura

Duration: Up to the visitor

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

BOOK TICKETS VIA vigilwake@phpci2019.com

COST: FREE

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