The Family in Hospital-Based Home Care with Special Reference to Terminally Ill Cancer Patients

Eighty-seven next of kin, 80 spouses and seven adult children, were the primary caregivers of terminally ill patients (87% cancer patients) cared for at the hospital-based home care (HBHC) unit of Motala Hospital during 1989–1990. All of the patients died in their homes. Next of kin were asked to complete self-questionnaires and to give written comments on their experiences and their perception of how the patient had felt about 13 aspects of home care provided by the HBHC staff. The response rate was 94%. In nine out of 13 areas, such as adequate information at the time of referral about the HBHC, security, support, immediate extra help when needed, high quality of nursing, and care and pain control, 86%–97% of next of kin were very satisfied (7–9 on a 9-point scale); whereas information provided about the disease, economic support, and support given after death were very satisfactory according to 72%, 58%, and 80% of relatives, respectively. Gender and time from diagnosis to death did not seem to affect responses. Next of kin of cancer patients were generally more satisfied than next of kin of other terminally ill patients. A total time of care of more than 60 days (median time) was associated with significantly more positive responses. Older spouses were significantly more satisfied with the HBHC than younger ones; despite this, 99% of all next of kin would choose HBHC again in a similar situation. It is concluded that very satisfactory terminal home care can be achieved, but it presupposes effective, prompt support and symptom control, 24 hours per day, and that both patient and family wish to participate in the HBHC.