The complexity of caring for the dying - an empirical approach to understanding palliative care as integrated care in the German healthcare system

摘要

End-of-life or palliative care is often complex: in terms of patient morbidity and symptoms, of interventions to be applied and of the type and number of service providers involved. The German healthcare system comprises different types of palliative care, including three levels of palliative homecare services provided according to the complexity of the patient situation: first GP-provided palliative services, then general palliative homecare (Allgemeine Ambulante Palliativversorgung, AAPV) and finally specialised palliative homecare (Spezialisierte Ambulante Palliativversorgung, SAPV) for the most severe cases. A project funded by the German innovation fund (Innovationsfonds) – called APVEL – evaluates palliative homecare provision in order to better understand in how far the needs of palliative patients are being met and to develop recommendations for the improvement of the guideline governing the provision of specialised palliative homecare (SAPV). As part of APVEL’s wider methodological approach, administrative data from a statutory health insurance are being used to analyse levels of service use, as well as start and end of palliative care relative to the time of death, to identify and describe distinctive groups of palliative patients and to determine factors distinguishing them from non-palliative patients at the end of life. The present paper deals with selected results of the analysis of administrative data, focussing on describing how palliative homecare services are being used, identifying any empirical clues for the complexity of end-of-life care and drawing initial conclusions as to how far existing services are designed to address this complexity.