Symptoms and treatment when death is expected in dementia patients in long-term care facilities

Abstract

BackgroundAlthough 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.MethodsWhen 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.ResultsTwenty-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.ConclusionIn 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.

Prospective Observations of Discomfort, Pain, and Dyspnea in Nursing Home Residents With Dementia and Pneumonia

“…Scores of DS-DAT and PAINAD before death were high, and scores of EOLD-CAD were low (indicating lower comfort) compared with another Dutch study where patients with dementia were observed in the days before death (most patients died of cachexia/dehydration). 13 This contrast does not seem to be attributable to differences in treatments in the last days of life, and confirms earlier findings that death from pneumonia involves a high symptom burden and is less comfortable than death attributed to dehydration after food and fluid intake problems. 6 When death neared, more patients were asleep.…”

“…Although the EOLD-CAD instrument was developed to assess comfort in dying retrospectively, the instrument has been used prospectively with success in patients expected to die, and we used it prospectively for all patients. 13 The observational instrument we applied to observe dyspnea, the RDOS, has been validated, but has not been used before in patients with dementia.…”

Palliative Care in Dementia

“…When people with dementia are transferred to a hospital they often receive intravenous treatment with antibiotics or fluid, or even tube feeding. This treatment increases at the end of life but practice in different countries varies (Klapwijk et al, 2014, Mitchell et al, 2009, and they also vary over time; for example there is a decline in feeding tubes used in USA (Mitchell et al, 2016).…”

Reconsidering long‐term care in the end‐of‐life context in Japan

“…The research to clarify the patterns of the trajectories of disability deepen discussion about the end‐of‐life in society; people have begun to recognize the importance of thinking about the end of life. There are certain types of symptoms that older adults experience during the end‐of‐life stage; however, the patterns of these symptoms are diverse . Although we can define the patterns of disability during the last stage of life, it is not always possible to predict when that stage will begin .…”

“…There are certain types of symptoms that older adults experience during the end-of-life stage; however, the patterns of these symptoms are diverse. 8,9 Although we can define the patterns of disability during the last stage of life, it is not always possible to predict when that stage will begin. 7 This complexity of defining and predicting the end of life within the context of long-term care leads to inescapable end-of-life problems; for example, the provision of futile medical treatments, and unnecessary and unplanned decision-making.…”