Half of Hospice and Palliative Care Unit Inpatients' Family Members Are Surprised by Death.

Abstract

Sudden unexpected death can occur even among patients with advanced cancer receiving hospice and palliative care. How bereaved families perceive this remains unclear. To investigate the prevalence of sudden unexpected death from bereaved family perspectives, the level of agreement with physician perspectives, and their association with bereaved families' mental health. We analyzed longitudinally linked data from a prospective cohort of advanced cancer patients in 23 palliative care units in Japan and a nationwide survey of bereaved families. Sudden unexpected death was assessed using previously reported definitions: (1) "surprise death" and (2) "rapid decline death," evaluated from both physician and bereaved family perspectives, and (3) "performance status-defined sudden death," evaluated only by physicians. Agreement among definitions was analyzed using kappa statistics. Bereaved families' mental health was evaluated using the Patient Health Questionnaire-9. Among 611 cases, "surprise death" and "rapid decline death" were more frequent from bereaved family (46.5% and 51.2%, respectively) than physician (8.2% and 16.5%, respectively) perspectives. Agreement between family and physician perspectives was low (κ = 0.04-0.14). The bereaved family-perceived "rapid decline death" was significantly correlated with depression (adjusted odds ratio = 1.75, <i>p</i> = 0.028), whereas physician-perceived sudden unexpected death showed no significant correlation. Compared with physicians' perspectives, bereaved family members perceive death to be sudden or unexpected more frequently and differently, and their perceptions are associated with postbereavement mental health. Further research is needed to explore strategies to improve communication and support families' psychological preparedness when a patient's death may be sudden and unexpected.