Terminal delirium: Families' experience

Background: Although delirium is a common complication in terminally ill cancer patients and can cause considerable distress to family members, little is known about the actual experience of family members. The primary aims of this study were thus to explore: (1) what the family members of terminally ill cancer patients with delirium actually experienced, (2) how they felt, (3) how they perceived delirium and (4) what support they desired from medical staff. Methods: A single-center in-depth qualitative study on 20 bereaved family members of cancer patents who developed delirium during the last two weeks before death. Content analysis of transcribed text was performed. Results: Families experienced various events including other than psychiatric symptoms, such as 'patients talked about events that actually occurred in the past', 'patients were distressed as they noticed that they were talking strangely,' 'patients talked about uncompleted life tasks', and 'patients expressed physiologic desires such as excretion and thirst'. Family emotions were positive, neutral, or negative (eg, distress, guilt, anxiety and worry, difficulty coping with delirium, helplessness, exhaustion and feeling a burden on others). Families perceived the delirium to have different meanings, including positive meanings (eg, relief from real suffering), a part of the dying process, and misunderstanding of the causes of delirium (effects of drugs, mental weakness and pain). Families recommended several support measures specifically for delirium, in addition to information and general support: 'respect the patients' subjective world', 'treating patients as the same person as before', 'facilitating preparations for the patients' death', and 'relieving family's physical and psychological burden'. Conclusions: From the results of this study, we generated a potentially useful care strategy for terminal delirium: respect the patients' subjective world, treat patients as the same persons as before, explore unmet physiological needs behind delirium symptoms, consider ambivalent emotions when using psychotropics, coordinate care to achieve meaningful communication according to changes in consciousness levels during the day, facilitate preparations for the patients' death, alleviate the feelings of being a burden on others, relieve family's physical and psychological burden and information support.