Palliative Home Care in Germany - Via HOPE Documented Experiences

Introduction Palliative home care is a challenge for professional care givers, if they want to pursue a common interdisciplinary multiprofessional concept for their patients with complex symptoms. Close communication in the team is paramount and this in turn is endorsed by a documentation system with an up to date and continuously accessible data base. The German Society for Palliative Medicine (DGP) and the German Association of Hospice and Palliative Care (DHPV) have developed a core data set for patient centred documentation, which would allow a nationwide evaluation of patient-related outcomes of specialized outpatient palliative care (SAPV). This is important in the situation of regional differing contracts between healthcare funds and palliative care providers. The hospice and palliative care evaluation HOPE offers an online documentation system including this core data set for years. Method This study presents first data from palliative home care services, documented by palliative care teams either as part of quality assurance programmes, in model programmes or as part of specialist palliative home care contracts with sickness funds. Since 2009 demographic and disease-related information has been documented for 1756 patients, in addition data on specialist palliative home care (SAPV) have been documented in a supplemental HOPE module for 841 patients. Patients accessed SAPV via their general physician in half of the cases and via physicians in hospital departments in 30%. In model projects most patients received counselling and coordination of care, whereas in contracts with sickness funds add-on provision of specialist care (in addition to basic care delivered by nursing services and general practitioners) was documented more frequently. Result Median duration of palliative home care was 11 days. Only 20% of patients dropped out of the palliative home care, half of these patients went back to non-specialist home care. Conclusion The core data set of HOPE and the SAPV module allow an evaluation of palliative home care, including the description of care settings and the scope of interventions. However, the results may not be representative for SAPV, as only some of the services worked within contracts with the sickness funds. The conclusions from the evaluation offer suggestions for improvement. This is urgently needed to ensure adequate quality of palliative home care throughout Germany in spite of the vast scope of conditions in different contracts with different sickness funds.