Quality Indicators of End-of-Life Cancer Care from the Bereaved Family Members' Perspective in Japan

Abstract

Although several studies about quality indicators (QIs) in end-of-life (EOL) cancer care have been conducted, the bereaved family members' perspective of QIs has not been investigated in Japan. The primary aim of this study was to rate QIs for EOL cancer care from the bereaved family members' perspective in Japan. A cross-sectional anonymous questionnaire was administered to bereaved family members of cancer patients who had died in an inpatient palliative care unit. We mailed questionnaires to potential respondents in March 2007. Of 160 questionnaires sent, 109 responses were analyzed (effective response rate, 76%). Eighty-eight percent of participants rated the medical examination by the palliative care team or specialist positively, 80% rated the availability of emergency room (ER) services or after-hour examinations positively, and 77% agreed that medical orders to alleviate pain or suffering were documented in the chart. Only 15% of the respondents agreed that it was preferable to die at home. Additionally, 59% and 46% of participants agreed that the occurrence of a fall or pressure ulcer and death by an adverse event from surgery or chemotherapy were poor QIs, respectively. Moreover, only 17% and 14% rated the short interval from chemotherapy to dying and frequent visits to the ER or after-hour examination as poor QIs, respectively. In Japan, it would be appropriate to extract QIs from medical charts. However, many items suggested as QIs in a previous study were found to be different from the opinions expressed by bereaved family members in this study.