Online exclusive: family satisfaction with perception of and barriers to terminal care in Japan.

Abstract

To examine how families of patients with cancer perceive and are satisfied with terminal care given in a university hospital and to identify barriers to the best care for patients and proper support for their families. Quantitative, descriptive. A Japanese national university hospital. Convenience sample of 73 family members of deceased patients with cancer (response rate was 55%). Completion of a questionnaire comprised of 23 items, including multiple-choice and open-ended questions. Satisfaction with terminal care, misunderstanding of narcotics use, recognition of disease signs and symptoms, and expectations for terminal care. Ninety percent of respondents were satisfied with nursing care. Eighty percent were satisfied with the information they received at admission, 70% were satisfied at the critical phase, and 63% were satisfied at the end of life. The main expected types of desirable terminal care were pain management and spiritual care. The bereaved had difficulty dealing with patients' pain, dyspnea, and appetite loss. Forty-four patients were treated with narcotics. Fifty-seven percent of the family members of these patients found pain to be the most difficult symptom to deal with. Fifty-eight percent of the respondents believed that if narcotics were used, patients would soon die. Terminal cancer care given in Japanese university hospitals does not appear to be adequate in terms of patients' and families' quality of life. The findings indicate that insufficient current information is given throughout the terminal stage of cancer and patients and their families misunderstand the use of narcotics. Oncology nurses need to consider different cultural backgrounds when offering specific care to patients with terminal cancer. Patients and their families must be educated about the efficacy of narcotics in the care of terminally ill patients with cancer.