Family perceptions of worry, symptoms, and suffering in the dying

In this exploratory study, family members of 63 decedents were interviewed by telephone, two to five months post-death, about their perceptions of their loved one's worries, symptoms, and suffering at the end of life. The most common worries reported focused on loss of bodily function (44%), being dependent (40%), and being a burden (39%). Distressing physical and psychological symptoms were reported. A majority (94%) of family members reported that their loved one suffered at the end of life, but only worries about loss of quality of life (e.g., being unable to participate in enjoyable activities) were predictive of reports of suffering. Findings suggest that worries, irrespective of the level of current symptoms, play an important role in the suffering of dying patients, and that treatment plans for the terminally ill should routinely explore both symptoms and worries.