Why are bereaved family members dissatisfied with specialised inpatient palliative care service? A nationwide qualitative study

Abstract

In order to improve the quality of palliative care, we can learn from bereaved families who were dissatisfied with the care they received. The primary aim of this study was to explore why bereaved families were dissatisfied with specialized inpatient palliative care. This qualitative study formed part of a nationwide questionnaire survey administered to 1225 bereaved family members of cancer patients who died in certified palliative care units in Japan. The participants were 22 consecutive family members who reported a greater need for improvement in care. Data were analysed by the content analysis. The reasons that the bereaved families listed are classified into 27 categories and seven themes: (1) lack of perceived support for maintaining hope; (2) lack of perceived respect of individuality, especially in attitudes toward death; (3) perceived poor quality of care, especially psychological care, not being treated with dignity and inadequate explanation from physicians; (4) inadequate staffing and equipment, especially physician availability; (5) unavailability of timely administration; (6) lack of accurate information about palliative care units; and (7) family's practical and economic burden. This study identified the multiple sources of dissatisfaction with specialized inpatient palliative care for bereaved families. These findings could be useful in developing a more desirable system of specialised inpatient palliative care.