Abstract
BACKGROUND: Although dementia at the end of life is increasingly being studied, we lack prospective observational data on dying patients. In this study symptoms were observed in patients with dementia in the last days of life. METHODS: When the elderly care physicians in two Dutch nursing homes expected death within one week, symptoms of (dis)comfort, pain and suffering were observed twice daily. For this the Pain Assessment in Advanced Dementia (PAINAD; range 0-10), Discomfort Scale-Dementia of Alzheimer Type (DS-DAT; range 0-27), End-Of-Life in Dementia-Comfort Assessment in Dying (EOLD-CAD; range 14-42) and an adapted version of the Mini-Suffering State Examination (MSSE; range 0-9), were used. Information on care, medical treatment and treatment decisions were also collected. RESULTS: Twenty-four participants (median age 91 years; 23 females), were observed several times (mean of 4.3 observations (SD 2.6)), until they died. Most participants (n = 15) died from dehydration/cachexia and passed away quietly (n = 22). The mean PAINAD score was 1.0 (SD 1.7), DS-DAT 7.0 (SD 2.1), EOLD-CAD 35.1 (SD 1.7), and MSSE 2.0 (SD 1.7). All participants received morphine, six received antibiotics, and rehydration was prescribed once. CONCLUSION: In these patients with dementia and expected death, a low symptom burden was observed with validated instruments, also in dehydrated patients without aggressive treatment. A good death is possible, but might be enhanced if the symptom burden is regularly assessed with validated instruments. The use of observation tools may have influenced the physicians to make treatment decisions.