1PM – 2:30PM
Location: Hampton Room 1
Please note: This time-slot contains 4 x 20 minute oral presentations
BUILDING COMMUNITY END OF LIFE CAPACITY BEYOND THE HEALTH SYSTEM: THE VICTORIAN LOCAL GOVERNMENT END-OF-LIFE PROJECT
Presented by: Andrea Grindrod, Bruce Rumbold
A fundamental issue in forming compassionate communities is to develop capacity for end of life care in agencies, organisations and informal networks that are not involved explicitly in healthcare. This has also been identified as a priority by the Victorian State Government in Victoria’s end of life and palliative care framework, adopted late in 2016. As part of the implementation of this framework, the La Trobe University Palliative Care Unit has been funded by the state government to incorporate end of life care into local government policy, planning and practice. Based on a Compassionate Communities approach, this three-year project (2017 – 2020) will provide resources and build organisational capability in local councils throughout Victoria to facilitate their development of community capacity in end of life care. The project has been designed, and will be carried out, in partnership with the state’s local government peak body, the Municipal Association of Victoria.
This presentation will share the project rationale, design, strategies for sustainable implementation that are currently emerging, the evaluation strategies being put in place, and the evidence we hope to produce. Successful implementation will see end of life care embedded in the next iteration of the Municipal Public Health Plans mandated for each local government authority. The project has the potential to be rolled out through all other states in Australia, and should also offer possibilities for collaboration with international projects aimed at developing community-based end of life care initiatives.
CITIZEN END-OF-LIFE CARE: INNOVATION ACTION DESIGNS IN EUROPE
Presented by: Aliki Karapliagkou
This oral presentation will address the challenges involved in the process of moving beyond the Compassionate Communities model and into a civic model of end-of-life care that utilises the organisational principles of the Compassionate Cities Charter and the methodologies of the public health approach to palliative care, including participatory community partnerships, sustainable frameworks of care and environmental reorientation towards death, dying, loss and bereavement. The formulation of proposals for change towards a citizen-led model to end-of-life care will be contextualised. Emphasis will be placed upon identifying ways in which we can engage local governments and incorporate community or neighbourhood initiatives in wider policy-led interventions led by social institutions and other public sectors in Europe. Within the framework of the European Union administration supported by scientific innovations, the paper will examine possible action designs and their implications for the Compassionate Cities model, its theoretical principles, including required adjustments and revisions of the basic conceptual model.
USING APPRECIATIVE INQUIRY AS A TOOL TO BUILD SUSTAINABLE COMMUNITY PARTNERSHIPS.
Presented by: Wendy Gain
Appreciative Inquiry is a strengths-based approach to change management. In an Australian project called Decision Assist – Palliative Care Linkages, 20 collaborative partnerships were formed to support dying elders through implementing one or more evidence-based linkage strategies. One of these partnerships was located in an aged care facility for Aboriginal elders, however the collaborating partners had a long and fractious history. Members of the local indigenous community were approached to contribute to identifying solutions to this discord. The unique concept of ‘community’ for Aboriginal Australians was a major consideration in the strengths-based approach to change for this partnership.
An Appreciative Inquiry Facilitator utilized this strengths-based approach to develop a shared vision for the community and service providers. Utilizing the five partnership principles of mutual benefit, equity, diversity, courage and openness, an agreed activity plan was developed for the partners to develop and deliver their shared vision. In doing so, the partners embedded the key principles into the partnership and resolved past discord in order to work more positively together. Appreciative Inquiry is a tool to move forward from a difficult past to a collaborative future.
THE EVOLUTION OF THE KELLEY COMMUNITY CAPACITY DEVELOPMENT MODEL FOR PALLIATIVE CARE
Presented by: Dr. Mary Lou Kelley
This oral presentation will describe and discuss the evolution of the Kelley model for community capacity development. It will illustrate how and why the model changed to become a powerful Canadian example of a public health approach to developing community based palliative care programs. Based on conducting participatory action research in rural, First Nations communities and long term care homes, the perspective of “community” gradually expanded beyond health care professionals to include natural helpers, front line care providers, formal and informal community leaders, and social services. The Kelley model has potential to be applied internationally since it builds a context specific palliative care program that is grounded in the local community and uses existing informal and formal resources.
Location: Hampton Room 2
Please note: This time-slot contains 1 x 60 minute workshop
A COMMUNITY HEALTH SYSTEMS STRENGTHENING APPROACH TO INTEGRATING PALLIATIVE CARE WITH A RESOURCE CONSTRAINING ENVIRONMENT; LESSONS FROM THE COLLABORATE PROJECT IN ZIMBABWE
Integrating palliative care into the HIV programmes in communities is necessary to achieve access to palliative care for all. Experience has proved that working with t community leaders made it possible for the community members to buy into the project and own the project. This presentation is about experiences, lessons learnt and challenges experienced.
Location: Room 106 A
Please note: This time-slot contains 3 x 20 minute oral presentations
SEVILLE IS WITH YOU, COMPASSIONATE CITY.
Presented by: D. Emilio Herrera Molina
The oral presentation details the development of community networks related with the end of life through “We are all with you” methodology of New Health Foundation for the development of compassionate communities and cities movement, implementing a public health and integrated care approach. We explain how the City Council, Social and Health Services can collaborate with the community to accompany and care for those who face advanced chronic disease and at the end of life.
To achieve this, we begin by creating networks of citizens and stakeholders that are interested in developing the project. Each individual or group of people who is willing to participate is given a role to promote end of life care in their environment. Simultaneously, we carry out awareness campaigns in the city (schools, universities, nursing homes, companies, public spaces of the neighbourhood, etc), and training programmes for social and health professionals and citizens.
Since beginning this project a year ago, we now have more than 30 organizations that collaborate and participate in the development of Seville as a compassionate city. We even have the participation from the City Council, which has signed a MOU to make public its contribution to the project. In January 2017, we have started a pilot project in the San Pablo district with 60,000 citizens. We have now introduced the role of a Community Promoter who works with a GP, Social Workers and Nurses that act as Case Managers, and stimulate the creation of a Compassionate Community and manage networks of care for people with advanced chronic conditions and at the end of life.
The objectives of the project are to:
To develop an aware and trained society to face advance illness and end of life situations.
To create compassionate community networks to accompany and care those citizens who face the end of life situation.
To make visible all available social and health resources in Palliative Care to those who need it.
BECOMING A COMPASSIONATE ORGANISATION – SOMERSET CLINICAL COMMISSIONING GROUP
Presented by: Julian Abel
Somerset Clinical Commissioning Group (CCG) commissions healthcare for the 500,000 people who live in Somerset. The end of life strategy, which aims to achieve a 50% home death rate by creating compassionate communities, includes developing compassionate organisations. The end of life lead for the CCG undertook an initiative to turn Somerset CCG into a compassionate organisation. This served the dual purpose of providing an example for other organisations as well as making the theory and practice of compassionate communities familiar to the commissioners.
Becoming a compassionate organisation has 3 steps, which do not have a particular order. These are developing a compassionate workplace policy, training compassionate champions within the workplace and setting up a bank of volunteer support for people undergoing hardship surrounding the experiences of death, dying and loss. The CCG started with supporting a small group within 1 area of the CCG to become compassionate champions and friends. The group met on a regular basis and put posters up to let workplace colleagues know if they wanted informal support during times of stress and loss. They kept count of the number of contacts and the subject matter. use of informal support quickly broadened into areas other than death, dying and loss. Once the group had gained experience they opened the training up to other areas of the CCG and to other organisations who worked in the same building. The CCG is now going through the process of developing a compassionate workplace policy.
BC COMPASSIONATE COMMUNITIES MOVEMENT- WHERE WE ARE NOW.
Presented by: Eman Hassan
Like elsewhere in Canada, the British Columbia population is ageing and the number of people with serious conditions continues to rise. Although medicalized dying in hospital continue to be the norm, the health system lacks the capacity and resources required to address the social and emotional dimensions associated with serious illness, dying and loss. These dimensions are central to the well-being of patients and families. Research indicates that communities have the resources that can help patients and families feel supported and cared for close to home.
Based on international best practices, the BC Centre for Palliative Care has launched a provincial grassroots movement to foster the spread of Compassionate Communities across BC by engaging citizens and community groups to be part of a network of compassionate champions and ambassadors.
In Spring of 2016, the movement was sparked by a Seed Grant Program to mobilize proactive community support networks, under the leadership of local hospice societies, whose mission is to promote awareness around end of life issues and leverage opportunities to support seriously ill patients and their families. In the Fall of 2016, the BC CPC has widened its circle of focus to involve population health and community organizations and groups from all sectors and at all levels.
As a social change organization, we will share our experience with the BC Compassionate Communities movement and the progress of the Compassionate Cities initiatives that are underway in BC and the Centre is supporting.
Location: Room 106 B
Please note: This time-slot contains 4 x 20 minute oral presentations
BUILDING PARTNERSHIPS BETWEEN HOSPITAL AND HOME: A CONTEMPORARY MODEL OF TRANSITIONAL BEREAVEMENT CARE.
Presented by: Leigh Donovan
Following the diagnosis of childhood cancer parents’ often come to think of their child’s hospital as a ‘second home’ over weeks, months and sometimes years of treatment Throughout this time, parents describe a growing disconnect with their existing support networks, including friends in their local community, schools and colleagues. Distance between the treatment centre and home, the impact of a new life experience and associated personal adjustment, and the reality of those in the local community ‘getting on with life’ are all factors which contribute to this growing divide. An innovative model of transitional bereavement care will be presented which complements existing models of integrative palliative care honouring the symbiotic transition between curative and palliative care, acknowledging the continual cycle of bereavement experienced by parents following the diagnosis of childhood cancer. The gradual oscillation between formal hospital bereavement care and community support is further supported by the Dual Process Model of Grief. Through gradual re-integration into their community family members oscillate between hospital-based care (loss oriented coping) and their community (restoration oriented coping). This model recommends bereavement care take a community capacity building approach with health care professionals taking an educative role commencing with anticipatory guidance and support for families and their community of supporters prior to the death of a child and facilitating ongoing connections with formal and informal support providers in bereavement.
‘MY NORMAL THING ENDED’: THE PLACE OF SOCIAL SUPPORT IN THE LIVES OF BEREAVED PARENTS.
Presented by: Leigh Donovan
Enabling strong and active social support networks for parents throughout their child’s cancer trajectory and end of life may facilitate ongoing connections with a family’s social network into their bereavement, reducing the sense of isolation parents so frequently describe following the death of their child.
This multi-site study assessed 1) the professional and social support utilized by parents throughout their child’s palliative and end of life care and their bereavement, and 2) barriers and gaps to accessing support at each of these time points.
Parents whose child had died from cancer (>6 months; < 10 years bereaved) were invited to complete a questionnaire and participate in a semi-structured telephone interview through four paediatric oncology facilities in Australia. One hundred and nineteen parents participated (34% interview opt in; 23% male, mean age 48 years, mean bereavement 5.6yrs, SD 3.0). Data were analyzed using SPSS22 and NVivo10.
Before their child’s death, 51% of parents indicated they would have liked more help than they received. Bereaved parents reported that their most helpful supports included: their partner/spouse (89%), friends/neighbors (92%), and other oncology and/or bereaved parents (57%). Empathic gestures (e.g. sympathy cards) were highly regarded (‘somewhat’/’very helpful’: 86%). ‘Needing to be strong for others’ was parents’ greatest barrier to accessing support before (‘often’/’always’: 80%), and following, the child’s death (‘often’/’always’78%).
WIRED FOR LIVING: DEVELOPING A PALLIATIVE APPROACH TO CARE FOR YOUNG ADULTS
Presented by: Karen Cook, Kim Bergeron
A growing population of young adults (YAs) with life-limiting conditions require a developmentally appropriate approach to care. Like all YAs, they are wired for living and aspire to attend post-secondary education, have meaningful vocation or work, and live independently. However, their developmental goals may collide with changing symptoms or end of life. Further, adult services are not designed to address their developmental, social, education and financial needs.
YAs with life-limiting conditions will benefit from a public health palliative approach to care, that matches their chronic disease trajectories of a series of declining plateaus over a period of months to years, punctuated by unpredictable periodic crises. A palliative approach to care for YAs facilitates collaborative partnerships across community and health agencies to ensure timely and seamless resources to meet their needs. These resources will support their quest to maximize their quality of life and opportunities in an abbreviated time frame. Currently, there are few programs that recognize the unique palliative needs of YAs.
Successes, challenges and results of our research, Bridging the Gap: Developing a Palliative Approach to Care for Young Adults will be described. We used a three-phase online patient engagement strategy to hear the voice of YAs with life limiting conditions, their families, and health and community professionals. This research culminated in a prioritized plan to enhance well-being, improve access to services and funding, build relationships, and develop a supportive community. Opportunities and barriers for research engagement with the YAs, their parents, and community and health providers will also be presented.
RELIGIOUS LEADERS ARE RELIABLE COMMUNITY OWNED RESOURCES TO SCALE UP PUBLIC HEALTH AND PALLIATIVE CARE HEALTH INITIATIVES.
Presented by: Dr Frank Manase
Religious leaders acknowledged the need for health knowledge on prevention and provision of primary health care for their followers. Active bilateral referrals between health providers and religious leaders were appreciated and the two professions perceived a beneficial partnership. Religious congregations enhanced the community’s access to preventive health services. Also the congregations have unexplored resources if well mobilized can optimize scale up of public and palliative health scale up initiatives.
Religious congregations are essential vehicles to expedite the public health and palliative care practices and It is possible to engage them.
Location: Room 106 H
Please note: This time-slot contains 3 x 20 minute oral presentations
RESPONDING TO A “DEPRIVATION OF ACCESS” EPIDEMIC: RWANDA’S SUCCESS IN DEVELOPING ITS LOCAL, SUSTAINABLE MORPHINE PRODUCTION PROGRAM
Presented by: Tayari K. Jean Claude, Marie Aimee Muhimpundu
Globally, the recent growing opioid epidemic has torn the world’s eye away from a silenced, very different reality: severe shortages and, in some areas, a complete lack of access to pain medications has left millions dying in pain. To simultaneously answer this critical human rights concern and also create a crucial, accompanying protective layer to opioid production, prescription and use, developing countries must now, perhaps more than ever before, be strategic and responsible in their development of local production chains. Rwanda serves as an example of this attentive, strategic design and implementation. Prior to the 2014 development of its local morphine production program, the country’s dependence on imported morphine from foreign production and procurement chains created a extreme barrier: less than 0.1mg of morphine was given per capita and an estimated 98% of end of life pain was left untreated. Today, by locally manufacturing oral morphine and adapting procurement chains, Rwanda is challenging this barrier and reorienting its environment to equip providers to alleviate patients’ physical pain. Within the contexts of both the local, historic extreme lack of access and the current global abuse epidemic, this presentation will examine the steps Rwanda has taken and its continuous demand for equity, sustainability, and safety as it has created its high-quality, local production since 2014. A detailed picture of the stakeholders and sectors Rwanda included in its initiative will also be reviewed and discussed, including national policy, procurement, labor, law, training and clinical care, interdisciplinary disciplines, and community sensitization and partnerships.
THE AVAILABILITY OF OPIOID ANALGESICS FOR PAIN MANAGEMENT IN YOUR SETTING: STRATEGIES TO EMPOWER PHARMACISTS TO CREATE, RATHER THAN DISRUPT, AN EQUITABLE SUPPLY CHAIN
Presented by: Diane Mukasahaha, Arielle Eagan
Focused on a patient as a person in an environment, public health and palliative care call for a holistic, interdisciplinary view of care delivery, both clinically and through the health care system’s design as whole. If engaged in palliative care training, treatment decisions with the clinical team, and advocacy around the procurement of pain medications, pharmacists stand as key stakeholders in ensuring, in particular, that pain management medicines flow through procurement chains properly and reach the hands of physicians, and thus patients in need. But if left out of trainings, not informed of care decisions, and not empowered to understand and advocate for pain medicines in supply chains, pharmacists risk creating a cascading barrier for palliative care at the clinical level. As Rwanda experienced, pharmacists ordering less pain medications can unintentionally create stock outs and, ultimately, disrupting the supply chain flow of the medicine to the patient in need. Rwanda’s Medical Procurement and Production Division recognized this growing systemic barrier and created trainings to dispel morphine myths and educate pharmacists on palliative care. Beginning with an interactive quiz based on the Morphine and Pain Management Skills Initial Assessment that Rwanda created and now uses, the audience will assess their own skills and envision how this tool, training, and concept of the cross-sector inclusion of pharmacy can apply is their own settings. Coming from all disciplines and backgrounds, attendees will be encouraged to develop action steps for how to reorient pharmacists to become advocates in their local palliative care systems.
OPIOIDS IN THE COMMUNITY: CHRONIC PAIN, PALLIATIVE CARE, AND ADDICTION.
Presented by: Ahmed Jakda, Tara Gomes, Tara Walton, Darren Cargill
The appropriate use of opioids has become a national health issue in Canada. To address growing concerns around inappropriate prescribing and public misuse of opioids, in the summer of 2016 policy makers in Ontario announced the delisting of high strength opioids from public funding through the Ontario Drug benefit formulary. This provided an opportunity for a unique collaboration of palliative care experts from the Ontario Palliative Care Network, the Section of Palliative Medicine at the Ontario Medical Association to work closely with the Ministry of Health and Long-Term Care to ensure that the needs of patients requiring high strength opioids for pain and symptom management in the palliative care setting would be maintained. Furthermore, researchers have been engaged to provide evidence to inform the potential impact of the proposed policy changes. This oral presentation will provide recent statistics in Ontario around opioid prescribing in palliative care, review chronic pain guidelines, as well as instances of overdose. We will also discuss solutions that have been developed to maintain access of opioids for those requiring them for legitimate uses, by way of redeveloping the prescriber-based Palliative Care Facilitated Access designation. Results of the solutions will also be shared. This work accomplished demonstrates a strong partnership between relevant stakeholders, and proves the value of working together to address a major health concern.
Location: Room 209
Please note: This time-slot contains 3 x 20 minute oral presentations
BUILDING RESEARCH EVIDENCE ALONGSIDE COMMUNITY INITIATIVES FOR PALLIATIVE CARE
Presented by: Michelle Howard, Kathy Pfaff
One in five Canadians are elderly or live with disabilities and many of these same citizens are also in their last year of life. They often experience systematic and invisible disparities in access to care and exposure to risks and are more likely than other citizens to ‘fall through the cracks’ of care systems, have poorer quality of life, experience social isolation, and depression. Many lack a voice in seeking help and the autonomy with which to direct and achieve what is most important to them. These issues are predictable and preventable.
The ‘Compassionate Communities” model is a population-based theory of practice for palliative care that mobilizes citizens to address these concerns as universal public health issues.
Health TAPESTRY is a program that leverages personal technology and community volunteers to help people illuminate their functional and quality of life issues, identify goals, and create plans that are shared through primary health care services. Originally developed in Hamilton, Ontario, the model is now being employed as a template to expand the Compassionate Communities model in Ontario, and has thus been coined ‘Community TAPESTRY’.
Integrating various research paradigms and methodologies, in tandem with program development can promote the scalability and sustainability of new and existing Community TAPESTRY initiatives. In this presentation, we will describe our emerging research community of practice, and highlight the conceptualization, research and evaluation approaches that are unfolding and being integrated into the Hamilton-Niagara and Windsor-Essex Compassionate Community initiatives.
HOW CAN THE HEALTH SYSTEM BETTER SUPPORT PEOPLE WITH END STAGE CHRONIC ILLNESS?
Presented by: Teresa Burgess
The complexity of the provision of end-of-life care for people with chronic disease is frequently underestimated and there is often an assumption that people with advanced chronic disease should be referred to palliative care services, with little clarity about when this should occur, nor whether this type of care best meets their needs. This presentation will discuss the results of research undertaken in Australia to identify how such care is currently provided and how future end-of-life models of care can be developed.
We used a Health Policy and Systems Research (HPSR) methodology, incorporating systems thinking and complexity theory, to explore health service dimensions such as policy, planning, management and organisation, as well as individual patient experiences.
We identified the importance of both an individual, person centred model of care based in primary care using a whole of system approach and a concurrent public health focused approach incorporating health promotion strategies such as community based education programs; community discussions around appropriate end-of-life care and the systematic identification of people who might benefit from end-of-life care. A priority should be the development of partnerships between communities and health service providers to inform the development of these models of care at the individual, primary care and public health levels. This requires reform of the structure and funding of primary care and the provision of incentives for quality end-of-life care. Above all, a shared vision of what end-of-life care in chronic disease should look like must be developed across the acute, primary care and community sectors.
THE LIMITS OF COMMUNITY FOR PEOPLE DYING IN ADVANCED AGE
Presented by: Merryn Gott
In many resource rich countries, death now most commonly occurs in advanced age. However, limited consideration has been given to how the unique palliative care needs of this age group could be better addressed by adopting a public health approach. In this presentation we report on a study conducted with the family and whānau (extended family) carers of participants in the LiLACS NZ longitudinal study of ageing dying aged >80 years in Aotearoa/New Zealand. Interviews were conducted with 58 people (19 Māori and 39 non-Māori) who had cared for 52 family/whānau members at end of life. Kaupapa Māori and social constructionist frameworks informed the research design and analysis. Recognised analytic techniques were adopted to promote data rigour. Overall, we found that family and whānau noted a reduction in the older person’s social networks prior to death due to the death/ill health of peers and moving, for example into an aged care facility. Barriers to community engagement were reported including access, poor health (notably dementia) and the reported preference of the older person to receive care primarily from family/whānau. Whilst there was some limited evidence that the older person could draw on existing social networks where these were already strong, there was very little evidence of new networks being established. Family and whānau had low expectations of what communities could provide at end of life to support people dying in advanced age, but did identify a potential role for community members in terms of reducing social isolation and loneliness.
Location: Theatre Hall 110
Please note: This time-slot contains 3 x 20 minute oral presentations
CREATING A SUSTAINABLE, PARTICIPATORY PALLIATIVE CARE PROGRAMME IN AN URBAN SLUM IN DHAKA, BANGLADESH
Presented by: Dr Nezamuddin Ahmad
The Centre for Palliative Care, based at the only medical university (BSMMU) in Dhaka, Bangladesh, in collaboration with Worldwide Hospice Palliative Care Alliance, piloted a one year project focussed on improving the quality of life of 100 older people and their families in two slum settings in Dhaka. This project was developed following the identification of significant palliative care needs of older people in the slum settings. In addition, the project was formed in response to the absence of programmes delivering palliative care to the poorest and most marginalised in poor urban settings in a sustainable manner within the context of the low development of palliative care and the human and financial resource limitations in Bangladesh. The programme was developed using a participatory approach which focussed on engaging members of the community in the delivery of the project through the identification and training of 8 palliative care assistants from the slum setting itself, who delivered basic care supported by health professionals, the development of palliative care activists within the community and the engagement of the slum community leadership. The impact of the project showed improved quality of life for the target population and the potential for further development as a sustainable, community owned model over a further 2 years, which could be translated into other urban settings. This presentation will highlight lessons learned from the development and implementation of the project and findings from the independent evaluation that was completed in December 2016, overseen by Glasgow University.
USING CREATIVITY TO DESIGN A PUBLIC HEALTH APPROACH TO PALLIATIVE CARE EDUCATION IN AOTEAROA, NEW ZEALAND
Presented by: Teresa Read
Health, according to WHO, is ‘everyone’s responsibility’ so too is death, dying, loss and bereavement care. Mary Potter Hospice has evolved its model of Education in palliative care to promote a public health approach.
This presentation outlines the creative initiatives tested through enhanced collaboration and participation with the Wellington community. We have increased engagement with Maori and Pasifika communities, Arts and Creative practitioners, Schools and Community Development agencies. These include:
Strategically engaging at governance level to integrate a public health approach to strategic planning and restructuring education services with dedicated hours to promote a public health approach to education
Compassionate Communities programme developed: masterclass, public talks, participation in community events and increased media and social media presence in community.
Medical Students using a creative reflection to explore their responses to visiting the dying
Building Resilience in Midwifery with creative reflection: an interactive workshop on grief, loss and unexpected outcomes of birth
Creative workshops exploring memory making and grief with patients, family/whanau and staff with the Voice Arts Trust
Developing resources and using creative methods (puppet and kite-making) for working with school children to unlock their feelings and experiences of loss and grief.
Healing through Storytelling with Maori and development of a Pasifika liaison role
Engaging Wellington Artist Sheyne Tuffery in design of a Hospice street mural
FILLING GAPS IN END OF LIFE EDUCATION: THE PATIENTS POINT OF VIEW
Presented by: Kathy Kastner
Presenting results of collaboration between patients of Family Doctors at Women’s College Hospital and BestEndings.com: Evaluating the only patient-developed website on end of life education.