HOSPICE AND PALLIATIVE CARE IN TYROL, AUSTRIA
DEVELOPMENT OF GENERAL AND SPECIALIZED PALLIATIVE CARE IN THE HEALTH CARE SYSTEMS OF TWO MODEL REGIONS Klaus Wegleitner1, Katharina Heimerl1, Elisabeth Medicus2, Ulrike van Appeldorn3 1 Institute of Palliative Care and Organisational Ethics, Faculty of Interdisciplinary Studies - IFF Vienna, University of Klagenfurt 2 Tyrolean Hospice Association, Hospice and Palliative Care Unit Innsbruck, 3 Government of Tyrol, Tyrolean Health Fund BACKGROUND The integration of palliative care into the national health-care systems is a priority of the European Union’s health care policy. Those efforts have been accompanied by establishing of specialist palliative care services, - like hospices, palliative care units, specialized palliative care teams and hospice teams -, as well as increasing of professionalization, routinization and standardization (Centeno et al. 2007; EAPC 2009, 2010). Certainly, this was a great achievement and resulted in improved access to palliative care and in stable structural integration of palliative care services in health care systems. But on closer examination of palliative care development in Central Europe and in Austria some limitations should be highlighted. o Only a very small percentage of the population has access to specialized palliative care services, despite the increase in demand. o Although palliative care potentially offers help for all in need, people with cancer are predominantly the major user group of specialized palliative care services. o People with chronical illness or dementia, frail elderly people, dying people with disabilities and other socially marginalized groups are hindered in their access to palliative care because of socio-structural issues (Koffman 2012). o Development processes in palliative care focus predominantly on improving professional practice and developing “organizations of experts”. One key challenge for improving end-of-life care is to establish a dignified culture of dying within all social and health care organisations (Heller 1996). Developing palliative care culture cannot be restricted to improving specialized palliative care and to processes within organisations but almost always requires communication between organisations (primary palliative care and specialized palliative care) as well as social integration on a community level (Murray et al. 2004; Heimerl, Wegleitner 2013). Introducing a palliative care culture within society requires a public health and health promotion approach (Kellehear 1999; Stjernswärd 2007).
Figure 1: Project partners and levels of intervention in each model region
AIMS The Tyrolean Regional Government commissioned a three years multi-level participatory action research project to develop hospice and palliative care in two model regions with . the following objectives: o To develop a regional specific concept for integrated (primary palliative care and specialized palliative care) palliative care o To generate knowledge and foster communication among local community and stakeholders o To integrate palliative care into the regional health-care systems o To supervise the integration-processes and consult local health care policy METHODOLOGICAL APPROACH This multi-level participatory action research (Mc Niff 2000; Minkler, Wallerstein 2002; Hockley, Froggatt, Heimerl 2013) project was laid out in three phases, each of them lasted a year: a) Needs assessment (Heslop 2001; Payne 2007) Palliative care conferences, interorganisational and interprofessional analysis workshops, qualitative interviews, reconstruction of patients trajectories, ethical case conferences b) Planning of measures c) Implementing measures & developing transfer recommendations Attention was given to three types of intervention (see Figure 1) : 1. Development of palliative culture in primary care 2. Development and acceptance of specialized palliative care structures 3. Integration and governance of hospice and palliative care plan in Tyrol Participation was encouraged through collective data collection, needs assessment and evaluation on a regional (model region) as well as on a supra-regional (province of Tyrol) level (see Figure 2): Level A = organisational level, Level B = interorganisational level, Level C = Policy and management level.
Figure 2: Project structures
I MPLEMENTED MEASUREMENTS Primary palliative care Palliative care culture in long term care settings
Integrated palliative care for home care, GPs and nursing homes
Community healthcare system Palliative care in acute care settings
Advance care planning
Round table: Hospice and palliative care
Results o This participatory action research project offered possibilities to further develop organisational palliative culture processes within different care settings. o The participating actors developed plans for necessary measures and steps to further implementation of palliative care in the model regions. o On policy and management level a steering committee was established, which brought together all representatives of the commissioning agency. o At all levels common goals and interests were discussed, strategic decisions and conceptual suggestions were debated.
Hospice training for volunteers
Specialized palliative care Interprofessionale palliative care course
Palliative care liasion team – Home care & inpatient
Hospice coordinator
Palliative care unit
Conclusion o This project process has enabled the local stakeholders to develop a perspective of an adequate regional palliative care culture. o It served to develop sustainable participation, networking processes and established structures of specialized palliative care services and units. o To foster the acceptance of new palliative care structures in the inpatient area as well as in the home care setting was a major challenge. o Finally almost all planned measures could be implemented. References
Funding This project was commissioned by the Tyrolean Regional Government and funded by the Tyrolean Health Fund. Acknowledgments We would like to thank all people who participated in the project processes. Special thanks to our colleagues Erich Lehner, Christian Metz, Andreas Heller and to the local project coordinators Daniela Meier, Heidi PlonerGrissmann, Wilhelm Raneburger, Markus Berger, Reinhold Pröll and Alois Gratl. Contact of Presenting Author Dr. Klaus Wegleitner M.A Institute of Palliative Care and Organisational Ethics IFF Vienna – Faculty of Interdisciplinary Studies University of Klagenfurt Schottenfeldgasse 29/4/1 I 1070 Vienna I Austria
[email protected]
Addington-Hall, Julia; Bruera, Eduardo; Higginson, Irene J.; Payne, Sheila (Ed.) (2007): Research Methods in Palliative Care. Oxford University Press. Oxford. Centeno, Carlos; Clark, David; Lynch, T, Racafort J, Praill D, De Lima L, Greenwood A, Flores LA, Brasch S, Giordano A; EAPC Task Force (2007): Facts and indicators on palliative care development in 52 countries of the WHO European region: results of an EAPC Task Force. In: Palliative Medicine, Vol. 21, No. 6, 463-471 European Association for Palliative Care (EAPC) (2009): White Paper on standards and norms for hospice and palliative care in Europe: part 1. Recommendations from the European Association for Palliative Care. In: European Journal of Palliative Care, 09/16 (6): 278 – 289 European Association for Palliative Care (EAPC) (2010): White Paper on standards and norms for hospice and palliative care in Europe: part 2. Recommendations from the European Association for Palliative Care. In: European Journal of Palliative Care, 10/17 (1): 22 – 33 Heimerl, Katharina; Wegleitner, Klaus (2013): Organizational and health system change through participatory research.In: Hockley, Jo; Froggatt, Katherine; Heimerl, Katharina (Ed.): Participatory Research in Palliative Care. Actions and reflections. Oxford: Oxford University Press: p. 27 - 39 Heller, Andreas (1996): Sterben in Organisationen. In: Grossmann, Ralf (Hrsg.): Gesundheitsförderung und Public Health. Öffentliche Gesundheit durch Organisation entwickeln. Facultas. Wien: S. 214 – 231. Heslop, Jo (2001): Palliative Care needs assessment: incorporating the views of service users. In: Field, David; Clark, David; Corner, Jessica; Davis, Carol (Hrsg.): Researching Palliative Care. Open University Press. Buckingham, Philadelphia: S.152 -156 Hockley, Jo; Froggatt, Katherine; Heimerl, Katharina; (Ed.) (2013): Participatory Research in Palliative Care. Actions and Reflections. Oxford: Oxford University Press Kellehear, Allan (1999): Health Promoting Palliative Care. Oxford: Oxford University Press Koffman, Jonathan (2012): Social inequalities at the end of life. In: Cohen, Joachim; Deliens, Luc (Ed.): A Public Health Perspective on End of Life Care. Oxford University Press. New York: p. 183 - 193 Murray, Scott A.; Boyd, Kirsten; Sheikh, Aziz; Thomas, Keri; Higginson, Irene J. (2004): Developing primary palliative care. In: BMJ 329: 1056 - 1057 McNiff Jean (2000): Action research in organisations. London, New York: Rutledge Minkler, Meredith; Wallerstein, Nina (2002): Community-Based Participatory Research for Health. San Francisco, London: Jossey-Bass Payne, Sheila (2007): Qualitative methods of data collection and analyses. In: Addington-Hall, Julia; Bruera, Eduardo; Higginson, Irene J.; Payne, Sheila (Hrsg.): Research Methods in Palliative Care. Oxford University Press. Oxford: S. 139 - 161 Stjernswärd, Jan (2007): Palliative Care: the public health strategy. In: Journal of public health policy, 28/1: 42 - 55
