Health-related quality of life in family caregivers of dying cancer patients: a comparison between a specialist palliative care unit and a home care setting

Background: Not much is known about quality of life of caregivers of dying relatives in Germany. Methods: The survey was carried out at the palliative care unit of the Centre for Anaesthesiology, Emergency and Intensive Care Medicine at the University of Goettingen. Questionnaires were sent to caregivers of deceased cancer patients who had either died in the palliative care unit or in a home care setting, in order to capture caregivers’ quality of life, burden, satisfaction and problems like sleep disorder, shortage of leisure time and financial hardships during the dying process. We calculated the SF-12 mental component summary scores (MCS-12) and the physical component summary scores (PCS-12). Results: Questionnaires were sent to 155 caregivers. 99 responses were obtained, of which 87 (= 56%) were included in the study. 50 patients were cared for on a palliative care unit and 37 patients in a home care setting. The caregivers’ reasons for home care were patient’s wish to die at home (55%) and adequate homecare conditions (31%). Strong unrelieved pain (44%), other symptoms (20%) and the overtaxing of the care situation at home (24%) were the reasons given for admission to the palliative care unit. Caregivers from the palliative care unit patients were significantly better informed about the patient’s diagnosis and prognosis and were more satisfied with the given information. Caregiver’s burden was high in both groups with a daily care time of more than 9 hours (palliative care unit 27%, home care 51%). About 50% of the caregivers of both groups managed the care without support from other friend or relatives. Additional the carers had other loads like own illnesses (15%), further diseases of other family members (10%) and child care (homecare 29%, palliative care unit 20%). Nearly all caregivers had less leisure time for their own (87%) and about half of the caregivers had a strong feeling of social isolation (55%). About 30% of both groups had relationship problems and about 50% had physical illnesses during the last 4 weeks before the death of the patient. Mental problems were significantly higher among the home caregivers (82%) compared to 66% of the palliative care unit caregivers. Further there were significant more sleep disorders in the home care group (88%) than in the palliative care group (71%). Financial Problems during the care time were not specified often (palliative care unit 17%, home care 6%). In both groups the percentage of caregivers who had to report themselves sick was about 17%. In comparison to the normal population, caregivers of both groups showed significantly reduced MCS-12 scores (palliative care unit: 10 - 60, median 30; home care: 13 – 59, median 29; normal population: 44.3 – 60.3, mean 52.3, p < 0.001) and significantly reduced PCS-12 scores (palliative care unit: 13 - 62, median 41, home care: 22 – 59, median 38, normal population: 40.9 – 58.3, mean 49.6, p < 0.001). The MCS-12 and PCS-12 scores didn’t differ significantly between both groups (palliative care unit/home care). Caregivers’ quality of life depended on the amount of time spent on care, on support by other persons, lack of sleep, isolation, relationship problems and on the amount of leisure time. In both groups there was a high satisfaction with the chosen place of care. Only one caregiver in each group wouldn’t choose the same place of care a second time. Conclusion: In comparison to the normal population, quality of life of family caregivers of dying tumour patients is reduced. This reduction does not depend on whether patients were cared for on a palliative care unit or at home. Additional negative factors are lack of support by family members, the amount of time spent on care, the reduction of leisure time and sleep, social isolation and relationship problems. A better social, mental and care support is needed to maintain good quality of life for all family caregivers. Therefore it is necessary for medical professionals involved in palliative care to focus on the patients’ and the caregivers’ needs