Evaluation of end-of-life cancer care from the perspective of bereaved family members: The Japanese experience

Surveying bereaved family members could enhance the quality of end-of-life cancer care in inpatient palliative care units (PCUs). We systematically reviewed nationwide postbereavement studies of PCUs in Japan and attempts to develop measures for evaluating end-of-life care from the perspective of bereaved family members. The Care Evaluation Scale (CES) for evaluating the structures and processes of care, and the Good Death Inventory (GDI) for evaluating the outcomes of care were considered suitable methods. We applied a shortened version of the CES to three nationwide surveys from 2002 to 2007. We developed the CES as an instrument to measure the structures and processes of care and the GDI as an outcomes measure for end-of-life cancer care from the perspective of bereaved family members. We conducted three nationwide surveys in 1997, 2001, and 2007 (n = 850, 853, and 5,301, respectively). Although six of the 10 areas of the CES showed significant improvements between the two time points investigated, we identified considerable potential for further progress. Feedback from surveys of bereaved family members might help to improve the quality of end-of-life cancer care in inpatient PCUs. However, the effectiveness of feedback procedures remains to be confirmed. Furthermore, there is a need to extend the ongoing evaluation process to home care hospices and general hospitals, including cancer centers, identify the limitations of end-of-life care in all settings, and develop strategies to overcome them.