Centre for Elderly and Nursing Home Medicine (SEFAS)
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Patients experience burdensome deaths in Norwegian Nursing Homes

Almost 50 % of nursing home patients in Norway die with moderate to severe pain. Reidun Sandviks PhD-study takes a closer look at end of life care in nursing homes.

old age
Grete Reimers

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Sandvik has taken part in a unique study where 691 nursing home patient were followed through a full year from admission to a Norwegian nursing home. Sandvik followed 134 patients prospectively through their last days in life instead of recapitalizing their last days of life.

The alarming results showed that in 39 % of the deaths the staff did not recognise that their patients were dying. As a result of this, symptom management were poor and patients died with burdensome symptoms.

Sandviks’ study finds that pain, anxiety, depression, poor appetite and increased fatigue are signs that staff interprets as signs of imminent dying, but still, these symptoms were not relieved at the time of death. Quite contrary, dyspnea and death rattle proved to increase in patients of their day of death.

The study proves there to be an urgent need for improved guidelines for palliative care to people with dementia and there should be a request for nursing home staff for more education and training. The recognition of imminent dying is key to plan for the last days and hours of life, so is the identification of burdensome symptoms to provide optimised and individualised pain management.


A total of 691 nursing home patients were followed during the first year after admission and 152 were assessed carefully in their last days of life.
Time between admission and day of death, and symptom severity by Edmonton symptom assessment system (ESAS), pain (mobilization-observation-behavior-intensity-dementia-2), level of dementia (clinical dementia rating scale), physical function (Karnofsky performance scale), and activities of daily living (physical self-maintenance scale).
Twenty-five percent died during the first year after admission. Increased fatigue (logistic regression, odds ratio [OR] 1.8, P = .009) and poor appetite (OR 1.2, P = .005) were significantly associated with being able to identify the day a person was imminently dying, which was possible in 61% of the dying (n = 82). On that day, the administration of opioids, midazolam, and anticholinergics increased significantly (P < .001), and was associated with amelioration of symptoms, such as pain (mixed-models linear regression, 60% vs 46%, P < .001), anxiety (44% vs 31%, P < .001), and depression (33% vs 15%, P < .001). However, most symptoms were still prevalent at day of death, and moderate to severe dyspnea and death rattle increased from 44% to 53% (P = .040) and 8% to 19% (P < .001), respectively. Respiratory symptoms were not associated with opioids or anticholinergics.
Pharmacological treatment ameliorated distressing symptoms in dying nursing home patients; however, most symptoms, including pain and dyspnea, were still common at day of death. Results emphasize critical needs for better implementation of guidelines and staff education.

Facts are from JAMDAs web page, www.jamda.com