WS1-4 - Families' sense of abandonment when patients were referred to a palliative care unit: J-HOPE 3 Study

Abstract

Terminally ill cancer patients and families may have sense of abandonment when they are referred to a palliative care unit (sense of abandonment). This study aimed to clarify the frequency of families' sense of abandonment, explore association between sense of abandonment and physicians' behaviors, explore constructive concept of sense of abandonment, and investigate association between sense of abandonment and families' depression and complicated grief. This is a part of a nation-wide self-reported questionnaire survey of bereaved families of cancer patients who died in palliative care units (PCUs), namely the Japan HOspice and Palliative Care Evaluation 3 study (J-HOPE 3). We sent questionnaires to 707 bereaved families whose family members died at 133 certificated PCUs before January 2014. In total, 189 (31.4%) families had sense of abandonment. The concordance of sense of abandonment between patients and families was weak (kappa 0.296). Both had less sense of abandonment after they were actually admitted PCUs. In multiple logistic regression analysis, the factors associated with more sense of abandonment were: physicians' explanation that there was nothing to do for patients; patients' younger age; and spouses of patients. The factors associated with less sense of abandonment were: families' perception that physicians had done good cancer therapy; physicians' explanation that PCU was one of the recommended places to receive care. Sense of abandonment was constructed with feelings of hopelessness/helplessness, and anger/distrust. Families with sense of abandonment showed high score of Patients Health Questionnaire 9 and Brief Grief Questionnaire. About one third of bereaved families had sense of abandonment and that was associated with some physicians' behaviors and patients' and families' characteristics. Sense of abandonment was associated with higher rate of depression and complicated grief.