Evaluation of care for leukemia and lymphoma patients during their last hospitalization from the perspective of the bereaved family

• More than half of caregivers were not satisfied with the care provided during the patient’s last hospitalization.
• Only 33% of caregivers agreed that the patient had been relieved as far as possible of pain and physical distress.
• Only 21.4% of caregivers agreed that the patient had been relieved as far as possible of psychological distress.
• Compared with the results of a previous study of PCUs in Japan, the CES scores were significantly lower in 9 out of 10 domains.

We aimed to evaluate care for leukemia and lymphoma patients during their last hospitalization from the perspective of the bereaved family. Questionnaires were sent to the bereaved family members of adult leukemia and lymphoma patients. We used the Care Evaluation Scale (CES) and asked the bereaved family members about care satisfaction and “good death” factors during the patient’s last week of life or last admission period. We distributed 177 questionnaires and were able to analyze 103 (58.2%) responses. Compared with the results of a previous study of palliative care units in Japan, the CES scores were significantly lower in 9 out of 10 domains. Assessment of the “good death” components revealed that only 33% of respondents agreed that the patient had been relieved as far as possible of pain and physical distress during the last week of life. Only 21.4% of respondents agreed that the patient had been relieved as far as possible of psychological distress, and 57% of caregivers were not satisfied with the level of care. During the last hospitalizations of leukemia or lymphoma patients, their care was insufficient and a good death was not often achieved. Improvement of end-of-life care for leukemia and lymphoma patients is needed.