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Katja Hermann 

Universitätsklinikum Heidelberg

Abt. Allgemeinmedizin und Versorgungsforschung

Voßstr. 2

69115 Heidelberg  

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Improvement of home-based care of palliative patients through support of care-giving family members

K. Hermann, F. Peters-Klimm, R. Bölter, J. Szecsenyi, P. Engeser

Universitätsklinikum Heidelberg, Abteilung Allgemeinmedizin und Versorgungsforschung


Summary of the project

The majority of patients with a tumour disease wish for care in the home at the end of life, but this wish is only fulfilled for 30%. Very frequently, in the last days of life, hospital referrals result, often because the family members feel overtaxed by the situation and do not gain sufficient professional support. Home-based care of palliative patients requires the active support of family members, who help in activities of daily life, take on care activities and take care of the patient's concerns. In this respect, they are confronted with various problems (physical and emotional stresses, financial and social problems). GPs are often the first contact partners for those affected and thus assume a key role in the care: They should perceive the medical needs of the patients as well as the physical and psychosocial burdens of the family members, show possibilities for lowering the burden and offer a moderating contact to further contact points (e.g. at the local level in line with the Chronic Care Model). Against this background, an intervention with GP practices should be developed and implemented that leads to a lowering of the burden on family members, a minimisation of the referral rate at the end of life and thus to a higher quality of life of patients and family members in accordance with the WHO definition of palliative medicine.


GP practice teams are initially informed in a workshop about the results of studies in which family members have indicated their burdens and wishes for easing their burden. Moreover, the teams are presented with the guideline "care-giving family members" of the German Society for General and Family Medicine, in which it is described how burdened family members can be recognised and in which examples for easing the burden are given. In subsequent focus groups, the practice teams should reflect on their previous approach and add their own strategies and ideas. Selected de-burdening strategies are implemented in the teams' own practice, e.g. by informing family members about counselling offers at the community level. The practice teams are supported in the implementation over a period of nine months by an academic team. During this time, and after 6 and 12 months, the family members are surveyed regarding their burden and the patients are surveyed regarding their quality of life. The study examines to what extent de-burdening offers for family members can be implemented in practice in the long term and assesses which effects can be expected through such a measure in terms of the burden on family members and the quality of life of patients.

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