What Is Palliative Care in Germany? Results from a Representative Survey

Abstract

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.

Subjective Definitions of Problems and Symptoms in Palliative Care

“…12 Similar significant differences were found for nursing and social problems, oedema and sleeping disorders 12 and might be related to either different catchment areas and populations or related to differences in staff members' attitudes and perceptions. While the incidence of pain was 39.1% for patients from oncological units, the incidence of this symptom ranged from 49% in some units to 78.5% in others.…”

Pain Management and Symptom-Oriented Drug Therapy in Palliative Care

“…This should not lead to rather invasive or stressing diagnostic or therapeutic measures, if they do not significantly improve the patient's symptom burden. If the drug treatment is appropriate and medical treatment focuses on the multidimensional needs of patients and families, the dying phase may be calm and perceived as peaceful [37].…”

Zur palliativmedizinischen Versorgungssituation in Deutschland

“…Dieses Programm führte schließlich dazu, dass bis heute bundesweit mehr als 120 Palliativstationen gezählt werden können. Über die auf den Palliativstationen in Deutschland geleistete Arbeit gibt seit mehreren Jahren eine standardisierte Kerndokumentation Auskunft, an der sich die Mehrzahl aller Palliativstationen beteiligt und die auch im internationalen Maßstab als wegweisend gilt [37,38,39]. Aufgrund der in den Palliativstationen über die Jahre gewachsenen Expertise dienen sie zwar primär der Patientenversorgung, spielen inzwischen aber auch eine nicht mehr wegzudenkende Rolle in der Aus-, Fortund Weiterbildung medizinischen und pflegerischen Personals.…”