What is palliative care in Germany? Results from a representative survey

The recent development of palliative care inpatient units in Germany has been impressive. As a first step for quality assurance, a core documentation form was developed in 1996. The core documentation form consisted of 4 pages with 35 items documenting physical and psychosocial symptoms at the time of admission, diagnostic and therapeutic procedures before and during inpatient treatment, and outcome of physical and psychosocial dimensions. Checklists were used for most items and free text entries could be added. Of the 65 palliative inpatient units in Germany, 44 participated in the second phase of the evaluation of the core documentation in 2000. Eight units were affiliated with anesthesiology departments, 31 with internal medicine, two with radiotherapy, 1 with a surgical department, and 2 units were not affiliated with a department of the hospital. A total of 1087 patients were assessed in the 44 units during a period of up to 3 months. There was a high variability between units in all checklist items of the core documentation. Compared to units affiliated with internal medicine departments, units affiliated with anesthesiology departments performed less chemotherapy, but more immunotherapy; gave fewer infusions and blood transfusions but more skin and wound care, and more lymphatic drainage and massage; and documented psychosocial interventions more frequently for patients as well as for relatives. In one-third of the patients, a consent for omission of therapeutic options was documented. Inpatient treatment ended with the death of the patient in 45.3% of patients and with discharge in 51.6% (not documented 3.1%). The efficacy of inpatient treatment was rated very high by the staff. In conclusion, we found large variation in the documentation pertaining to palliative care patients at the time of admission, as well as for inpatient treatment, among palliative care units in Germany. This was related to the affiliation of the units at least to some degree, but also to differences in interests and documentation discipline. We suggest that training procedures for documentation should be included in crossectional surveys, as the results may not be comparable otherwise. However, common documentation instruments may be the first step towards an interdisciplinary discussion on aims and methods in palliative care.