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.