PHPCI Newsletter - September 2016
Please find our first newsletter from PHPCI. This is quite extensive in the first instance and we expect it will get smaller! It is an introduction to the wide variety of initiatives taking place all over the world. We have had contributions from a good selection of countries but there is more happening even than contained in the newsletter. This is an exciting time for the public health approach to end of life care. Projects are growing, the evidence base is expanding and countries are now thinking about making it mainstream into palliative and end of life care strategies. A number of centres have contacted us about the possibility of achieving compassionate city accreditation. The PHPCI board have not yet decided what format this will take and we expect an ongoing discussion over the next 12 months before we come up with a definitive answer. We want to get this as right as we can manage so that it is something that is attractive to a wide variety of towns and cities and builds for the future as well.
We hope you find the newsletter inspirational. We are looking for someone from the membership who is interested in becoming the newsletter editor so if you are interested, please email me at email@example.com
Best wishes and looking forward to seeing you in Ottawa in September 2017. The call for abstracts is now open.
Julian Abel, Vice President, Public Health Palliative Care International
Research and Evaluation Update
Libby Sallnow, Specialist Registrar in palliative care and PhD candidate, Vice Chair Public Health Palliative Care UK.
There is much to report this year as we have seen a great increase in publications and resources detailing research conducted in the field of public health and end of life care. This section will look at new articles and books published over the previous year, a look at what research and evaluation is being undertaken currently and what opportunities exist looking to the future.
New research published
It has been a busy year for publications. Wegleitner, Heimerl and Kellehear’s new book, ‘Compassionate Communities: Case Studies From Britain and Europe’ (Routledge, 2015) pulls together a wide range of contemporary practice examples from compassionate communities work in a convent, through a community pharmacy, through hospices and for people living with dementia, alongside a description of the Compassionate City Charter and comment and critique of how the movement is developing.
Horsfall, Yardley, Leonard, Noonan and Rosenberg published the research report ‘End of Life at Home: Co-Creating an Ecology of Care’ (accessible at http://researchdirect.uws.edu.au/islandora/object/uws:32200), describing part of their larger study, ‘Caring at End of Life’. They used innovative participatory visual methods alongside interviews and focus groups to gather perspectives from over 200 carers and members of formal and informal caring networks to understand how ordinary people were supported to die at home and how formal and informal networks and the wider community facilitated this and interacted.
The INSPIRE Trial (INvestigating Social and PractIcal suppoRts at the End of life): Pilot randomised trial of a community social and practical support intervention for adults with life-limiting illness by McLoughlin et al. (BMC Palliative Care, 2015 accessible at http://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-015-0060-9) describes the protocol for a pilot randomised control trial of a volunteer-led, social and practical model of care and support against usual care. It will use the Medical Research Council’s Framework for the Evaluation of Complex Interventions to assess the intervention’s impact on a range of outcomes such as social and practical need, quality of life, loneliness, unscheduled health service utilisation and volunteer death anxiety and confidence.
The March 2016 issue of Progress in Palliative Care was a special issue on Public Health and Palliative Care with guest Editors John Rosenberg, Jason Mills and Bruce Rumbold (http://www.tandfonline.com/toc/yppc20/24/1). The issue has a host of articles from around the world including Sweden, Australia, Kenya and the UK describing practice, methodological issues and critique of progress in the field so far by Allan Kellehear.
Current issues of Palliative Medicine and BMJ Supportive and Palliative Care both have relevant articles to the public health approach. Abel and Kellehear look to the future for palliative care in ‘Palliative Care reimagined: a needed shift’ (BMJ Supportive and Palliative Care 2016, accessed at http://spcare.bmj.com/content/current) and set out what is required of palliative care if an equitable level of care is to be provided to all irrespective of diagnosis in the context of diminishing resources. Sallnow, Richardson, Murray and Kellehear published a systematic review of the impact of a public health approach to end of life care, specifically focusing on community action. They found evidence of the impact of this work on outcomes for carers, volunteers and the wider community and on indices such as place of death and involvement of palliatve care services. This article is available to download on the EAPC blog (https://eapcnet.wordpress.com/2016/03/07/the-impact-of-a-new-public-health-approach-to-end-of-life-care/).
Current research news and the future
A research network for masters, doctoral and post-doc researchers in the field of new public health and end of life care has been formed through PHPCI. This will serve as a support, reference and networking group and will be mainly through email with some face to face meetings at relevant conferences. Please email firstname.lastname@example.org if you would like to find out more or become a member.
A number of studies are currently underway and some will be publishing results over the coming months. The End of Life Social Action Study (ELSA) is a randomised control study and qualitative case study project evaluating the impact of community based volunteering at the end of life in the UK. This is being undertaken by the University of Lancaster and the Institute of Volunteering. The INSPIRE study mentioned earlier is also a randomised control trial underway in Ireland. The University of Southampton undertaking a study titled ‘Community-based Volunteer-led Support for Family Caregivers Caring for a Relative or Friend with Palliative and/or End-of-Life Care Needs at Home (Co-Care)’. It is hoped the study will provide preliminary insights to support a proposal for a larger programme of research, the aim of which is to develop, implement, evaluate and disseminate a community-based, volunteer-led model of support for family caregivers providing care at home for relatives or friends at or near the end of life. This proposal will be submitted to the NIHR's Programme Grants for Applied Research funding stream in 2016.
In Alberta, Canada, a study led by Dr. Kyle Whitfield and Dr. Martin LaBrie is looking for evidence to demonstrate the value of a community-led approach to hospice care. The study will be conducted in three rural communities in Alberta, Canada: “Community capacity development to enhance hospice palliative care in Alberta communities: What is the evidence to demonstrate the value of a community engaged model?” Data gathering is just beginning. Each community has been visited by the researchers to hear stories of why and how they became hospice care leaders. Next a survey of Board members from all three Hospice Societies will be implemented followed by a focus group interview with each Board. Focus group interviews with Hospice Society community volunteers and family members that have cared for a loved one with a life limiting illness will also take place. Study findings will be used to understand similar work being done in rural communities in other locations in Canada.
And finally there are a number of PhD studies near completion around the world. The most recently completed was by Dr Sally Paul at the University of Edinburgh titled ‘Advancing education and support around death, dying and bereavement: hospices, schools and health promoting palliative care’. This study used an action research approach to explore and advance practice between one hospice and two primary school communities. Seven practice innovations were identified and are at various stages of being piloted and evaluated. These activities focus on raising awareness, developing education and changing organisational culture and processes around issues related to death, dying and bereavement.
Research – the future
There are great opportunities for research in this area going forward. A particularly promising avenue is collaborative work, between countries or between settings and the setting up of international associations such as this one allows for networks of practitioners and researchers to meet … watch this space!
Dr Libby Sallnow
Dr Emilio Herrera Molina, Presidente, NEW HEALTH FOUNDATION Spain
“WE´RE ALL WITH YOU” (“TODOS CONTIGO”) PROJECT FOR A GLOBAL COMMUNITY UNITED BY THE CALL OF CARING.
The New Health Foundation (NHF) is a not-for-profit institution that seeks to promote and foster a new health model to improve the quality of life of people with advanced chronic disease, high dependency and at the last stages of life, especially through the integration of health, social and community services in palliative care. For these purposes, NHF has developed three tools: 1) The NEWPALEX Program, a quality based methodology to the develop excellent and efficient palliative care programs and resources, 2) the Observatory of Integrated Care Models (OMIS), to enlighten good practices in Spain that shows how to integrate health and social services, and 3) the “WE´RE ALL WITH YOU” project (TODOS CONTIGO) a method to involve communities to develop compassionate cities.
The NHF WE´RE ALL WITH YOU (TODOS CONTIGO) is the main promoter in Spain and Latin America for the development of Compassionate Cities within Public Health and Palliative Care International association. It was launched in July 2014 as a project of social awareness and training. The main goal is to involve citizens in supporting, accompanying and caring for those who are suffering from advanced illness and are at the end of their life. The foundation carries out and shares educational activities such as conferences, seminars, training courses and meetings, to stimulate synergies and collaboration among institutions, organizations, and companies. In every project, NHF identify local experiences that already work on similar actions at the end of life in that city, give them visibility, offer networking and involve them as "partners" of the common mission and creating consortiums. A glossary of common terms has also been designed for all participants and this “shared language” describes how their Compassionate City operates. With this general procedure, NHF promotes the creation of Compassionate Cities in different contexts. NHF is learning and continuously evolving in methodologies to establish synergies, as well as the development of public awareness, training and networks for care in the Latin context.
In October 2015, NHF launched its own demonstration project with “Seville WITH YOU, compassionate city”, in Spain. Since the beginning of this project, a city mapping has been conducted, to identify the main key players. A plan of actions with the project partners has being designed and a growing network has also been set up. In November 2015, the 1st promoters meeting of WE´RE ALL WITH YOU project (TODOS CONTIGO) took place, with the participation of Professor Allan Kellehear (University of Bradford, UK) and the presence of different stakeholders which are now part of the project: Seville city council, universities, official colleges, schools, associations, scientific societies, professionals and other Companies. As part of the plan, a press conference took place, counting with the presence of the Mayor of Seville city, representing the city council. We have also celebrated a public kick-off with a choreography that represented the Language Care though the dance of hundreds of citizen hands (lenguajedelcuidado.com). In this event, we danced with more than 300 children and senior citizens. The project and its actions are now being viewed in newspapers and TV. At this moment, we are designing annual training plans in Seville, as well as first contacts with volunteers associations and citizens.
Other cities are joining the project. Vivir con Voz Propia (Living with Own Voice) in Vitoria, Spain, has been conducting various activities in this context, for the last two and a half years (monthly lectures, workshops, training, counseling, volunteer sessions in schools). NHF is also supporting this initiative helping them to become a compassionate city. The Universidad Pontificia Bolivariana, in Medellin Colombia, holds a sensitization-training program at the university (10 modules a year) which is expected to train 250 caregivers. Furthermore, it has developed three meetings of caregivers and 2 Awareness Days with Medical Research. Also in Cali, Colombia, the Palliative Care Foundation is now at the early stages of the Project: they are identifying key agents to start creating awareness-raising and training actions. Also in Colombia, some other initiatives are beginning. Some other countries are coming on board in the Latin context: The Instituto de Investigación Médica Alfredo Lanari in the Universidad de Buenos Aires, Argentina, is developing the "Palliative Care project: social practice and education at the undergraduate level"; this is an educational-practical program that has trained already more than 100 medicine students for 2 years (2014-2015).
Related to research, NHF leads a multicenter research on Citizen Networks that care for their relatives and neighbors at the end of life. We are identifying the personal profile and the support they provide to those who are involved at that care. The goal is to define a “Care and Accompaniment Guide”. Research activities are being conducted in Badajoz, Spain (completed), Buenos Aires, Argentina, and Medellin, Colombia (still in the process).
As part of the scientific committee, the NHF has promoted and finally will eventually organize a round table about the developing of Compassionate Cities and Communities at the next 16th National Congress of the Spanish Society of Palliative Care that will take place in Seville, Spain, in May 2016. Apart from this, a number of conferences and talks on to these topics are being given in several congresses in different cities in Spain and Colombia.
The NHF is establishing international partnerships with organizations working in similar projects as The Institute of Palliative Medicine of Kerala (India) whose director Dr Suresh Kumar participated in the first conference in Seville in Nov 2015; the Milford Care Centre (Limerick, Ireland) that has allowed the NHF to translate the video "Bill's Story", expanding the “iconic” message to Spanish speakers countries and to share the INSPIRE project (Investigating Social and Practical supports at the end of life); the Instituto Pallium Latinoamérica (Buenos Aires, Argentina) with whom a Community Intervention Research Project is being developed in order to identify the training needs of volunteers and to develop training programs to improve the volunteer’s performance. In Spain, NHF also supports and follows the “Se+” Project (like “Be+”) of the San Juan de Dios Hospital (Pamplona, Navarra) that is an educational initiative that raises awareness about end of life at primary and secondary schools.
Finally, a map of the compassionate communities and cities that are joining the project in the Latin context is going to be published on NHF website (www.newhealthfoundation.org), as well as different materials and tools, that are nowadays still in the design phase.
Dr Kathleen McGoughlin, All Ireland Institute of Hospice and Palliative Care/Irish Cancer Society Research Fellow, Department of Psychology, Maynooth University, Compassionate Communities Project Co-ordinator, Milford Care Centre, Ireland
Implementing the Compassionate Cities Charter in Ireland
Milford Care Centre’s Compassionate Communities Project was launched in 2011 in North West Limerick City and has now grown to work across three counties of the Mid-West of Ireland. The project takes a whole population approach, working with communities to provide education, Café Conversation, resources, seed grants and a Good Neighbour Partnership within a three-strand model. The project, led by Dr. Kathleen McLoughlin, Jim Rhatigan, Marie Richardson and Rebecca Lloyd is Ireland’s first hospice led demonstration model of health promoting palliative care. They are now working with the Mayor of Limerick and Limerick City and County Council to enable Limerick to fulfill the actions under The Compassionate Cities Charter.
Kathleen explains “On 25th January 2016, Limerick City and County Council unanimously voted to work toward recognising Limerick as the first Compassionate City in Ireland, through implementation of the Compassionate Cities Charter. A public meeting will be held in April 2016 to raise awareness of the Charter with a view to establishing action groups to examine what is already happening in each area of civic society and exploring what actions communities within the City could take with a view to developing an action plan”.
On October 7th 2016 Milford Care Centre and The Mayor of Limerick will host an International Compassionate City Summit in Limerick, at which they will launch their action plan and intention to become recognised as the first Compassionate City in Ireland. Jim explains “The Charter offers us an opportunity to take the work that is happening already in the City, the work of the project and other stakeholders such as The Irish Hospice Foundation and bring it together under one umbrella to gain recognition for the City as a whole. The Charter brings an energy and enthusiasm with it that we hope will engage may people from diverse sectors of the City”.
Many readers will be familiar with Bill’s Story, developed by the Limerick Compassionate Communities Project and they have found that using visual film and animation is a good way to share their vision with others. They have created a new film to inspire the people of Limerick to work with them under the framework of the Charter. The film was created by Rebecca Lloyd who developed Bills Story, she says “When we speak to communities, people engage in different ways. Some people want facts and handouts, other people love the richness of the stories about what has originated from the project and for others connect with music and imagery. The new film brings all of these elements together telling a story, presenting facts and inspiring a momentum for social and civic change.”
The role of the Compassionate Communities Project in implementation of the Charter is that of project management and support. Marie Richardson urges other cities to engage in this approach but also brings a word of caution “We have to ensure that there is integrity of process. Our project has been developing slowly since 2011 and we need to ensure that actions against the Charter are organic and not forced upon society. The public meeting will enable us to hear what the issues are for people of Limerick City and also to present our vision. The hard work then begins to establish congruent solutions. We work with and not on communities.”
The process of implementing the Charter in Limerick is one that will be watched with interest by members of PHPCI and as with all the resources and learning the Limerick Project generate, they are happy to share with the wider international community.
For more information visit www.compassionatecommunities.ie
Kathleen McLoughlin email@example.com
A public health approach for children and young people’s palliative care in the United Kingdom (UK).
Peter Ellis, Chair, Engaging Communities Action Group Together for Short Lives, Chief Executive, Richard House Hospice London.
There is very little documented in how the public health approach in palliative care can be applied for children and young people with a life limiting or life threatening condition and their families.
What we do know is that the death of a child or young person in our society has a profound impact on their family, friends, neighbours and community. Further, this impact will last for many years; indeed, for the siblings this may affect them for the rest of their lives. Death and dying, loss and grief is everyone’s business, and the death of a child and young person has a deep and lasting impact on the family, their friends, their school and the wider community.
Across the United Kingdom there are at least 49,000 children and young people with a life-limiting condition, and more recent research indicates that this number could be even higher. The majority of them are likely to be stable (85%), and therefore little clinical support might be required, but families report feeling isolated and under considerable strain with the pressure of looking after a child with a complex health care condition.
Children’s palliative care has been organised in the UK for over 30 years, with themodel of care largely based on the traditional children’s hospice model, as first established at Helen House, Oxford and the specialist medically led teams such as the first team established at Great Ormond Street by Dr Ann Goldman. Many children/young people receive palliative care from tertiary level, disease specialist services. A public health approach aims to bring the support the family need into their home situation by building community support.
Together for Short Lives, the UK national body for children’s palliative care, aims to lead a paradigm change in children’s palliative care across the UK, moving away from “being in charge”, being able to let go and working with whole community approaches. They will seek opportunities to work with services to encourage the development of simple, straightforward, sustainable, reliable and effective responses to the challenge of community engagement. This aims to prepare the children’s palliative care sector to embrace a model of care which recognises the different but complementary roles of professionals and the community in dealing with dying, death, loss and grief.
The assumption is that the number of children and young people with a life limiting condition is much smaller than adults with a palliative care requirement. Therefore, our initial approach is that we start with the child/young person and their family (the alternative is that we start with the community at large), focusing on those people (family, friends, neighbours and others close by) who are or could be in contact with the family, to enable them in turn to support the family. We have called this approach “circles of care”.
The intended impact is to enable children and young people to live their lives. This recognises that professional communities can limit the child/young person’s horizons and our interventions can lead to dislocation from the local community (going to special schools, going to tertiary hospitals, limiting leisure opportunities). It then recognises that the community could have an increasingly important role in supporting children, young people and their families.
The demand for hospice and palliative care services cannot be met in the future through the traditional model as funding and workforce development will not keep pace with demand and thus a new approach to the thinking for a model of care is required. It is only when services realise the limits of what they can do is room created for new thinking and a new dialogue.
The Together for Short Lives strategy will be based on:
Promoting an understanding of what community engagement means in children’s palliative care
Providing information and support to underpin the development of local community engagement approaches
Facilitating change and supporting change agents to bring about change and establish community engagement alongside more tradition approaches in children’s care
The Together for Short Lives work has just begun, and we are planning to establish a number of pilot sites across England, aiming to help increase the understanding of the impact that a public health approach to children’s palliative care may have. We hope this will help galvanise the work into broader action across all children’s palliative care services, embracing the complementary support offered through a public health approach to children’s palliative care.
Public Health and Palliative Care Update UK
Dr Julian Abel, Consultant in Palliative Care, Vice President Public Health Palliative Care International and Chair, Public Health Palliative Care UK
Progress in implementation of public health approaches to end of life and palliative care in the UK have progressed significantly since the 4th International Conference Public Health Palliative Care held in Bristol in May 2015. It seems that some of the desired outcomes of the conference have been successful. Community development has been put into national policy in the UK. Practice development has continued in a variety of different arenas. A number of projects have been funded at national level and there is continued interest in the Compassionate City Charter.
The document Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020 was published by the National Palliative and End of Life Care Partnership. This is a coalition of 28 organisations in England which includes Public Health England, NHS England, National Council for Palliative Care, Hospice UK and Marie Curie Cancer Care amongst others. The document sets out 6 areas for development over the next 5 years and Ambition six is ‘Each Community is Prepared to Help’. This is made up from 4 major components.
1. Compassionate and Resilient Communities
2. Public Awareness
3. Practical Support
Inclusion of this ambition has significant implications for development of public health and palliative care. Commissioning organisations are now setting their strategies which include this ambition. Provider organisations, ranging from hospitals to hospices, are setting their plans which include public health. Regulatory organisations such as the Care Quality Commission will look in the future to see if Ambition 6 is being met. This will mean that to some degree, public health approaches to end of life care has become mainstream. Given that there is some lack of familiarity with what this will involve, national guidance to ambition six, communities are prepared to help was published in July 2016. http://www.ncpc.org.uk/sites/default/files/J1448 ncpc_strand_6_ART_NC.pdf
The Scottish Public Health Network has published ‘Palliative and end of life care in Scotland: The rationale for a public health approach’. The report aims to examine the rationale for applying a public health approach to palliative and end of life care and to explore where and how public health approaches could be applied to support local service planning and delivery. These 2 documents together mark a shift from interest in public health approaches to mainstream adoption of principles.
In February, the Public Health England Board meeting devoted their morning session to end of life care and public health. Professor Allan Kellehear, Dr Julian Abel, Professor Tony Walter and Claire Henry, chief executive of the National Council for Palliative Care, gave presentations. They were supported by a number of others, including Heather Richardson, Chief Executive St Christopher’s Hospice, Dr Roz Taylor, Medical Director of Hospice UK, and Professor Bill Noble, Editor of British Medical Journal Supportive and Palliative Care. This meeting hopefully marked increased recognition of the importance of public health and end of life care for Public Health England.
The Cabinet Office in the UK, a department that works on behalf of the Prime Minister and the Cabinet, has funded 7 public health and end of life care projects with a total sum for £1 million. These projects are already underway and the evaluation will hopefully be published at some point in 2016.
The National Council for Palliative Care and Public Health England have jointly supported 6 pathfinder sites in implementing the Dying Well Charter. The sites all are based around public health and different projects in a variety of circumstances are underway. The methods include policy setting for Clinical Commissioning Groups, community capacity building in neighborhoods and educational institutions and on going community development projects in Hospices. A presentation day took place place on July 18th where reports from the pathfinder sites were be presented. At the same meeting, the national guidance was be launched.
Outside of these 2 significant initiatives, there are a wide variety of practice developments taking place. Community development, not just in end of life care, is now seen as a significant part of addressing issues of increasing social isolation and loss for people with frailty and multiple diseases. Linking end of life care with existing projects is a mutually supportive way of enhancing both. A number of hospices have shown interest in public health approaches and are running projects independently. Other organisations and charities, such as Living Well Dying Well, are interested. Living Well Dying Well have now trained over 100 doulas, who are community members who are available to help navigate and support families undergoing the experiences of death, dying and loss.
Compassionate City Charter
The Compassionate City Charter remains the mainstay as the central concise summary of the diverse initiatives of public health approaches to end of life. Under the direction of Professor Allan Kellehear, Bradford City are committed to become a compassionate city and have set up a project board for implementation. A number of other localities are interested. As usual, Allan is leading the way and once Bradford have moved forward, other cities and communities will be looking to follow their example.
In summary, development has continued apace and remains very positive. There is a lot of work to be done to continue this momentum and there is an increasing number of people who are interested in taking this up.
Julian Abel September 2016
Germany, Austria and Switzerland, April 2016
Klaus Wegleitner Assistant Professor, Institute of Palliative Care and Organizational Ethics, Faculty of Interdisciplinary Studies (IFF Vienna), Alpen-Adria University Klagenfurt, Vienna, Austria.
One vision, various developments, local actions
In Germany, Austria and Switzerland the attention for public health and health promotion approaches in palliative care is continually increasing. We see movements, research, projects and activities outgoing from several communities, and health care organizations in all three countries, which contribute to this encouraging fact. They are characterised by the very specific local care cultures, care networks and political conditions in the respective region. They are partly developing in parallel and they would in most instances not associate themselves to the public health palliative care development or label theirs initiatives and projects with these terms. In these countries the conceptual pair “public health palliative care” is less a common description used in different fields of care practice than an academic framing of approaches and activities that give priority to participation, empowerment, promoting social capital, setting up networks, partnerships and neighbourhood projects in the local community and foster civic engagement in care for people with chronic illness or dementia, frail elderly people, dying people and their loved ones. All these activities are not medical, nursing or social interventions on an individual level but rather interventions on the levels of populations, communities and care settings (organizations, care networks, etc.) to develop and reorganize care services and foster local care cultures and social webs of relationships in end-of life care.
What´s going on in Germany?
Current social- and health care policies, national as well as in diverse federal states, in Germany are referring increasingly to the concepts of caring community and networking in the local communities. At the same time, many innovative models of care, often initiated by local citizenry, are emerging in “the third social space” - between private households and institutionally provided care. This influences the organization of elderly care and end-of life care in substantial manner. Social- and health care organizations are starting to strengthen their relationship with the local communities in manifold ways. Several nursing homes (e.g. in the region of Aachen) do this in the light of enhancing palliative care culture, as organization and in the community. Cities and municipalities are on the way to promote local care networks and implement health promotion strategies in elderly care. However, dealing with dying, death and loss is not yet on the agendas of local governments. Although care for the dying is slowly becoming a focus of attention for neighbourhood managers in urban districts.
The field of hospice- and palliative care in Germany is on the move in general. Based on wide implemented specialized palliative care structures it is currently characterised by a new legal framework, a new national research programme and a broad public discourse about dying in dignity and physician assisted suicide. End-of life care is perceived as being more and more a public and therefore public health issue in Germany, which should be organized in togetherness of informal and formal care, integrated in everyday life. There is still a long way to go, but we have noticed positive evidence. Broader community-based palliative care networks are arising in several regions and hospices (e.g. Hospice Esslingen) are gradually establishing community partnerships. They understand raising public awareness, strengthening self-help resources of persons concerned and sustaining collaborations with local partners as their core business. And: The discourse about establishing compassionate communities is just starting in larger cities like Berlin.
Developmental research and projects
Research about the conjunction of public health and palliative care has been taking place for years at the Hannover Medical School in Germany. Professor Nils Schneider and his team were able to show needs, potential benefits and preconditions for a stronger mutual reference. The research team has developed targets for public health initiatives to improve palliative care in Germany.
The Center for Developments in Civil Society (led by Prof. Thomas Klie) and the Protestant University of Applied Sciences in Freiburg are doing research and launching projects together with health care providers, diverse communities, municipalities and governments in order to establish caring communities for the elderly, which do not focus on, but include end-of life care.
The non-profit association Aktion Demenz (Prof. Reimer Gronemeyer, Verena Rothe) is a German-wide initiative. It aims to improve the lives of people with dementia, primarily through public dialogue, and to raise awareness for this variation or manifestation of life. Funded by the Robert Bosch Foundation, Aktion Demenz initiated the funding programme ‘People in the Community Living with Dementia’. Since 2008 cities, districts, villages and communities have implemented over seventy “dementia-friendly community” projects. The evaluation of this funding programme has been published (Rothe Verena, Kreutzner Gabriele, Gronemeyer Reimer (2016): Im Leben bleiben. Unterwegs zu Demenzfreundlichen Kommunen. Remain in life. On the way to dementia-friendly communities)
Over the last years, many voluntary hospice teams and palliative care organizations established collaborations with schools and kindergartens. They developed a wide range of different programmes that are partly evaluated: e,g. “Hospice goes School” (Hospice Movement Düren e.V.), a project week for primary school, realised all over Germany; “Give me a little Safety” (Malteser Germany & IFF Vienna / Austria), which includes manifold programmes and formats for kindergarten, primary school, high school and child- and youth groups, realised in many federal states; “Dealing with dying, death and grief” (Centre for Palliative Medicine Cologne & Hospice and Palliative Association Germany).
Accrued from a collaboration of Austrian Red Cross, IFF Vienna (Austria) and international experts Dr. Georg Bollig and a German-Norwegian-Danish team were developing and evaluating a Last Aid Course with four modules to “teach” palliative care to the public. The project received awards from the palliative care community as well as from the national government.
What´s going on in Austria?
In many respects, the situation, the public discourse and current developments in Austria are comparable with Germany. Essential differences should not been overseen. Austria is much smaller, with less urban cities but more rural regions. It´s social and health care policies bases still more on structural planning than on promoting community-based care models. Due to this, there exists less variety of innovative models in different sectors of social and health care. Because of a political framework for the implementation of palliative care, health policy in Austria focuses on establishing specialist palliative care services as well as on the integration of palliative care in nursing homes and in primary home care (initiated by the umbrella organization “Hospice Austria”). Despite all this positive developments we still can observe a lack of community participation and community-capacity building processes in current palliative care in Austria, as well as insufficient public awareness for questions and societal challenges of care, solidarity, prevention, and the common handling of life-limiting illness, dementia, frailty, dying, death and bereavement. Apart from that, individual organizations and communities are on the track to strengthen partnerships between health services and communities and to establish community and living space oriented end of life care.
Developmental research and projects
The Institute of Palliative Care and Organizational Ethics at the Alpen-Adria Universität Klagenfurt, Faculty of Interdisciplinary Studies (IFF) in Vienna (led by Prof. Andreas Heller), has been established participatory research and health promoting palliative care in organisations and regional networks since the late 1990s. Inspired by developments in community-based palliative care, health promoting palliative care and many encouraging compassionate community models in Kerala, UK, Canada, Australia and all over the world, the Institute has initiated a research programme called ‘promoting communal care culture at the end-of-life’ (led by Klaus Wegleitner). Its aim is to foster the paradigmatic shift from professional- and institution-centred end-of-life care to community-based and health promoting approaches in current palliative- and dementia care in Austria and in the neighbouring countries of Germany and Switzerland through a variety of model-projects.
E.g. The project ‘Caring community in living and dying’ has taken place in the Tyrolean community Landeck from 2013 – 2016 in partnership with the Tyrolean Hospice Association, local community sectors of government, informal and professional caregivers, self-help groups, schools, engaged citizens and other key players within that community. It aimed to strengthen networks and solidarity in the community in order to support older people in every-day life and family caregivers. Several settings for public discussion (citizenship forum, public future workshop, etc.) as well as local initiatives and interventions (public ‘last-aid’ course, school projects, caretaker/minder in the community, etc.) facilitated a broad involvement from concerned persons, (hospice) volunteers, healthcare professionals and providers and the broader local community. As one result, the philosophical Landecker Hand-Booklet “Worldly Wisdom in Care” (Schuchter 2016) was published. It should encourage people to be concerned with “the last questions” of life and to strengthen self-help resources of informal caregivers. The public „last aid course “ preventing, caring and a good life until the end had been established as a space in the community, where existential experiences are shared, knowledge is changed and transferred, information to end-of life care and dealing with death, dying and loss is given and the familiarity with informal and formal care resources is promoted.
Other IFF Vienna model projects are: Compassionate Community in Solothurn (Switzerland), a convent initiative in Switzerland which researched the potentials of translating pre-professional forms of supportive cultures into the practice of contemporary end of life care in the community with respect to ‘caring democracy’ (Tronto). Ethics from the bottom up (taking place in the regions of Bad Bentheim and Rüdesheim / Germany), a project that highlights a specific approach to compassionate communities whose emphasis is specifically on the development of empathy between community members through shared narratives of care and concern. It represents a paradigmatic shift from clinical ethics to “communal” ethics. Dementia-Friendly Pharmacy (in Lower Austria and Salzburg), a project that examines the role of community pharmacy in providing and enhancing community support for people living with dementia.
The IFF Vienna has developed a curriculum for a master of public health and palliative care. The programme will start in October 2017 at the Alpen-Adria University of Klagenfurt.
In cooperation with the Austrian Red Cross the IFF Vienna will launch caring community model projects in different model regions in Austria in the next two years. At the start of 2017 an international expert-workshop on the issue of caring community and local care networks will take place in Vienna.
Inspired by community and neighbourhood programmes of Hospices in in the UK the Tyrolean Hospice Association does have the vision to develop their new “Hospice House Tyrol” in Hall as initiator of compassionate communities. The IFF Vienna accompanies and evaluates the project.
A quick glimpse to Switzerland
Inspired by the Kerala model of “neighbourhood network palliative care” a few years ago a team of researchers (led by Prof. Steffen Eychmüller) of the Palliative Care Centre in St. Gallen initiated a community-based palliative care project in three regions in North-Eastern Switzerland and in Liechtenstein. The results of the research study and experiences gathered in the course of the research period have led to a series of recommendations for practical application, published in the handbook "Palliative Care in der Community". The palliative ostschweiz (Palliative Eastern Switzerland), as palliative care promoting association at cantonal level and nationally, continues those activities in terms of setting up local hospice- and palliative care networks in many municipalities in Eastern Switzerland. The current national research programme for end-of life care in Switzerland might reinforce public health issues in palliative care.
Dr Denise Marshall BSc., MD, CCFP, FCFP
Medical Director, Niagara West Palliative Care Team and McNally House Hospice;
Compassionate Communities Lead, Pallium Canada;
Health promoting Palliative care is really starting to take hold in Canada!
Thanks in large part to the many visits and scholarly addresses done across Canada by Dr Allan Kellehear over the past 3 years, Canada has catapulted forward from pre 2013 where a vague understanding of the concepts of Public health and Palliative care seemed to exist here, to being a country where mobilization around Compassionate Communities/Cities/Schools and Companies is emerging everywhere! A critical mass of champions, ambassadors, leaders and facilitators are growing across the country and a fairly intense focus by these leaders on knowledge translation of the main concepts is now bearing fruit. At the grassroots level, many local programs and initiatives with community development origins have realized that the Compassionate Communities model fits their already existing initiatives quite well, and the frameworks and international applications are helping them move to the next level. For others, these concepts are quite new, but are helping, truly at just the right time in our country’s social evolution, to focus efforts across health, social and community sectors.
Community development and engagement initiatives are particularly noteworthy. Everything from our version of Death Cafes ( Die-alogues!), to reading initiatives, bereavement yoga and town hall forums, are occurring all across Canada.
There is evidence of third sector mobilization with community agencies seeing a collaborative role and partnership with palliative care programs and services.
Regional and municipal governments are finding value in learning about and embracing the Compassionate Cities Charter and several cities in Canada are well on their way to meeting the Charter goals.
There is some outstanding evidence at the regional government and provincial government levels of adopting a Health Promoting Palliative Care platform at the systems level the collaboration that has resulted in these areas is incredible. Our own Kelley model of Community development, which is an excellent application of HPPC is getting a huge boost due to an increased understanding of the concepts of palliative Care as public health. We are even seeing some interest from our dear colleagues and educators in Public Health!
Those of us who have been early adopters of PHPC in Canada, are ourselves amazed at the readiness and uptake now in Canada. We will be able to share and show you the results of our mobilization when you join us here in Canada for PHPC17 September 2017 in our nations capital, Ottawa, Ontario, Canada. We can’t wait to thank you in person, welcome you, and learn more from your wonderful experiences around the world.
A new collaboration between Palliative Care Australia and The Groundswell Project will bring together world leaders to advance the Compassionate Communities movement in Australia. Supported by the Australian Government, Palliative Care Australia and The Groundswell Project will host a Compassionate Communities Symposium in February 2017.
The Symposium will bring together community leaders from local government, not for profit organisations and community groups to develop ways to support people at the end of their lives.
When: 20-21 February 2017
More information HERE
Bringing people together to discuss their death wishes may sound like a morbid affair, but according to the Health Performance Council of South Australia’s report on end-of-life care 2013 and many other Australian reports it is exactly what is required to improve people’s experience of death.
Palliative Care South Australia is the state peak body for palliative care. Our mission is to influence and support quality of life outcomes for people facing death and bereavement by promoting resilience and well-being in response to end of life issues and to encourage people to build their death literacy. We do this by hosting events and activities to raise awareness about hospice and palliative care philosophy and by bringing people together to discuss its values, principles and development.
Motivating people to talk about death and dying is a perennial issue and in 2015 PCSA added Die-alogue Cafe’s to its repertoire of death literacy activities. The idea emerged following the Chief Executive’s attendance at the Groundswell Project’s Death Literacy Conference in back in 2014 and it has been an overwhelming success story. We know people are keen to know more about illness, dying, death and grief but there were very few platforms from which to do so.
Modelled on the international and growing movement of “Death Cafés”, Palliative Care South Australia launched the Die-alogue Café as a model for talking about death and dying. It has all the regular hallmarks of your favourite morning tea destination with one major difference, the main topic of conversation is death.
We wanted to offer an opportunity where anyone could meet and have an honest and genuine conversation with peers, with the aim of improving ultimately their end of life experience or that of someone they love. The fact is that most people don’t seek out detailed information about end of life services until they encounter the system as a patient or through a relative or friend. This means that many people don’t have the opportunity to prepare for death, making the whole experience more traumatic.
Die-alogue Café sessions are facilitated by people experienced in caring for people facing death and bereavement. In setting the annual program topics cover anything from “The Farewell - bury or burn” and “Death rituals” to “Crossing the line: when cure becomes care”, no question is off limits.
Graham James, Managing Director, Alfred James Funerals said he applauds Palliative Care SA’s aim to shake off Australian society’s ingrained reluctance to talk about death in this manner. According to the Grattan Institute’s 2014 report, Dying Well, failure to talk about and plan for death is one of the most significant obstacles to improving the quality of dying.
“The aim of the Die-alogue Café is to give people the opportunity, no matter their stage of life or death, to gain the information they need to ultimately improve their experience of end of life, or that of someone they love. We hope people will feel more at ease with dying and the choices we all have to face at some point.
Tracey Watters, Chief Executive Officer, Palliative Care South Australia
Palliative care volunteering in NSW - Since the Bristol Conference
We have continued to work with volunteer services in NSW to identify the needs of volunteers and services. In October 2015 we published Palliare: A Handbook for Palliative Care Volunteers in NSW. Currently we have a Management Guidance Manual in pre-publication to guide the development of new services and new volunteer managers in palliative care volunteer services.
At the end of last year we studied the activities of volunteers in residential aged care and their training in palliative care. This year we are studying the end of life literacy of other non-specialist volunteers in the community. We are also researching the experience of paediatric palliative care volunteers in NSW’s children’s hospice, and will be looking into the experience of community visiting volunteers in particular in rural and regional centres.
A separate study has considered the development and fading away of a district-wide volunteering initiative in the Murrumbidgee area, interviewing volunteers and management staff and identifying the key issues and recommendations for the future.
In July 2016 we are hosting a Community Hospice forum to discuss the role of small volunteer-lead organisations in providing end of life residential support in NSW. This has been the topic of two background reports which are published on our Volunteer Hub website.
Linda Hansen, Executive Officer, Palliative Care New South Wales Inc
The La Trobe University Palliative Care Unit is funded by the Victorian Government for teaching, service and research in public health approaches to palliative care. Initially service and research were carried out in partnership with palliative care services. In the past few years our focus has shifted to building partnerships beyond the health sector, particularly with welfare bodies investigating better end-of-life systems for their clients. We’ve worked with people with intellectual disability and, to an extent, homeless Victorians. We’re presenting three invited papers at the IASSIDD (Disability) World Congress this year, and have advocated for including these groups in the forthcoming Victorian end –of-life care framework policy. We’re also partnering with the peak Victorian local government body to introduce end-of-life considerations into council policy, planning and practice across the state.
Collaborative research with volunteers building community capacity for end-of-life care has recently been completed. Two new research projects on an asset-based community design for an end-of-life home-based care network and community campaign have commenced. Research partnerships with Curtin University, Western Australia and the Karolinska Institute, Sweden, continue.
Palliative Care Tasmania in 2013 received $3 million commonwealth funding for community development of end-of-life care capacity. In the last 18 months education has been provided to over 5,000 Tasmanians and nearly $1 million in funding allocated to 70 organisations for initiatives generated from, or supported by, the community.
Diverse groups have been engaged, including CALD communities and Aboriginal people. Community organisations supported include schools, community houses, aged care facilities, arts-based organisations and media. Most initiatives have used forms of artistic expression, including music, performing arts, visual arts, and exhibitions. Employing staff in each of the three key regions has created strong links with the community and ensured that funding targets local need.
PCWA – David Smeeton, Executive Committee
Palliative Care Western Australia will highlight a Compassionate Communities approach during Palliative Care week in May with a four day outreach information event at the Mandurah Performing Arts Centre, emphasizing the need for communities to engage with those living a life limiting illness who are isolated from society.
 The World Health Orgnisation defines palliative care for children begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
 Life limiting conditions in children and young people can be defined as conditions for which there is no reasonable hope of cure from which children or young people will die. Life-threatening conditions are those for which curative treatment may be feasible but can fail such as cancer.
 Children in Scotland requiring Palliative Care: identifying numbers and needs (The ChiSP Study), Fraser et al, University of York, October 2015