With the introduction of an ambulatory community-centered comprehensive cancer care system in Hamburg, based on private practice outpatient day clinics in 1976, it became obligatory to study the psychosocial consequences both for the patient and the relatives taking care of them and their impact on private and professional cancer nursing. In a common effort of qualified cancer nurses, medical psychologists and oncologists, we visited 59 surviving dependents who had cared for their relatives who had died from cancer four to twelve weeks before. In semi-structured interviews comprising 117 questions we studied the subjective and objective burden related to psychological, social, physical and nursing areas. In 85% the nursing service was predominantly supported by the spouses, in 15% by children or parents. The average duration of total dependence of the bed-ridden patient was 16 days. In 94%, gratitude for and acknowledgement of the deceased were the dominant motivation, in 44% the relations towards the patient grew more affectionate. Being responsible for the terminal care was experienced as too heavy a burden because of insufficient medical (39%) or nursing support (35%), 64% claimed an inadequate preparation for death as a sudden and frightening event. In retrospective, 76% of the caring relatives would again prefer terminal home care to hospital services. Following a discussion of problematic methodological aspects of the responses to our interviews, consequences are presented for an improved support of the terminally ill patient and his caring family, as well as for professional education and further development of the hospice system in Germany.

Keywords:
Ambulatory cancer care, Terminal care, Hospice
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© 1991 S. Karger AG, Basel
1991
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