Scott A Murray1, Adam Firth2, Nils Schneider3, Bart Van den Eynden4, Xavier Gomez-Batiste5, Trine Brogaard6, Tiago Villanueva7, Jurgen Abela8, Steffen Eychmuller9, Geoffrey Mitchell10, Julia Downing11, Libby Sallnow12, Erik van Rijswijk13, Alan Barnard14, Marie Lynch15, Frederic Fogen16, Sébastien Moine17. 1. Primary Palliative Care Research Group, Medical School, University of Edinburgh, Edinburgh, UK Scott.Murray@ed.ac.uk. 2. University of Edinburgh, Edinburgh, UK. 3. Hannover Medical School, Hannover, Germany. 4. University of Antwerp, Antwerp, Belgium. 5. WHO Collaborating Centre for Public Health Palliative Care Programmes, Catalan Institute of Oncology, Barcelona, Spain. 6. Research Unit for General Practice, Aarhus University, Aarhus, Denmark. 7. University of Lisbon, Santa Maria Hospital, Lisbon, Portugal. 8. Department of Primary Health, Floriana, Malta. 9. Center for Palliative Care, Kantonsspital St. Gallen Institute, St. Gallen, Switzerland. 10. University of Queensland, St Lucia, QLD, Australia. 11. Makerere University, Kampala, Uganda Development of Palliative Care Services, Belgrade, Republic of Serbia. 12. St Joseph's Hospice, London, UK. 13. General Practice Hopveld, Den Dungen, The Netherlands. 14. University of Cape Town, Cape Town, South Africa. 15. The Irish Hospice Foundation, Dublin, Ireland. 16. Centre Hospitalier Luxembourg (CHL), Rue Nicolas Ernest Barblé, Luxembourg. 17. Laboratoire de pédagogie de la santé, Université Paris 13 Département de recherche en éthique, Université Paris-Sud, Orsay, France.
Abstract
BACKGROUND: A multidisciplinary European Association of Palliative Care Taskforce was established to scope the extent of and learn what facilitates and hinders the development of palliative care in the community across Europe. AIM: To document the barriers and facilitators for palliative care in the community and to produce a resource toolkit that palliative care specialists, primary care health professionals or policymakers, service developers, educationalists and national groups more generally could use to facilitate the development of palliative care in their own country. DESIGN: (1) A survey instrument was sent to general practitioners with knowledge of palliative care services in the community in a diverse sample of European countries. We also conducted an international systematic review of tools used to identify people for palliative care in the community. (2) A draft toolkit was then constructed suggesting how individual countries might best address these issues, and an online survey was then set up for general practitioners and specialists to make comments. Iterations of the toolkit were then presented at international palliative care and primary care conferences. RESULTS: Being unable to identify appropriate patients for palliative care in the community was a major barrier internationally. The systematic review identified tools that might be used to help address this. Various facilitators such as national strategies were identified. A primary palliative care toolkit has been produced and refined, together with associated guidance. CONCLUSION: Many barriers and facilitators were identified. The primary palliative care toolkit can help community-based palliative care services to be established nationally.
BACKGROUND: A multidisciplinary European Association of Palliative Care Taskforce was established to scope the extent of and learn what facilitates and hinders the development of palliative care in the community across Europe. AIM: To document the barriers and facilitators for palliative care in the community and to produce a resource toolkit that palliative care specialists, primary care health professionals or policymakers, service developers, educationalists and national groups more generally could use to facilitate the development of palliative care in their own country. DESIGN: (1) A survey instrument was sent to general practitioners with knowledge of palliative care services in the community in a diverse sample of European countries. We also conducted an international systematic review of tools used to identify people for palliative care in the community. (2) A draft toolkit was then constructed suggesting how individual countries might best address these issues, and an online survey was then set up for general practitioners and specialists to make comments. Iterations of the toolkit were then presented at international palliative care and primary care conferences. RESULTS: Being unable to identify appropriate patients for palliative care in the community was a major barrier internationally. The systematic review identified tools that might be used to help address this. Various facilitators such as national strategies were identified. A primary palliative care toolkit has been produced and refined, together with associated guidance. CONCLUSION: Many barriers and facilitators were identified. The primary palliative care toolkit can help community-based palliative care services to be established nationally.
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