A family's difficulties in caring for a cancer patient at the end of life at home in Japan

Context. Most people hoped for home care at the end of life and death at home in Japan. However, the rate for death at home from cancer in Japan is less than 10% of the total deaths of cancer patients. Objectives. The aim of this study was to investigate circumstances, difficulties, and correlated factors for family caregivers who provided care at home for a family member with terminal cancer. Methods. The Family's Difficulty Scale for end-of-life home care questionnaire was sent to 395 bereaved family caregivers who had cared for a terminal cancer patient with the assistance of home services. Results. We obtained 306 responses for a response rate of 81%. The results showed that family caregivers had a high rate of difficulties related to "Patient's pain and condition" (64%~90%) and "Burden of care" (61%~78%). A logistic regression analysis was performed on the data to examine factors related to the difficulties. More difficulties occurred for male caregivers (odds ratio [OR] = 0.39, P = 0.04) who did not prefer for the patient to die at home (OR = 0.42, P = 0.01). Conclusion. This study indicates that it is important for home care providers to introduce services to reduce care burden. In addition, a thorough explanation of the patient's symptoms and condition is necessary to reduce distress and anxiety for family caregivers.