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Abstract
BackgroundLittle is known about the quality of end of life care in long-term care (LTC) for residents with different diagnostic trajectories. The aim of this study was to compare symptoms before death in LTC for those with cancer, dementia or chronic illness.MethodsAfter-death prospective staff survey of resident deaths with random cluster sampling in 61 representative LTC facilities across New Zealand (3709 beds). Deaths (n = 286) were studied over 3 months in each facility. Standardised questionnaires - Symptom Management (SM-EOLD) and Comfort Assessment in End of life with Dementia (CAD-EOLD) - were administered to staff after the resident’s death.ResultsPrimary diagnoses at the time of death were dementia (49%), chronic illness (30%), cancer (17%), and dementia and cancer (4%). Residents with cancer had more community hospice involvement (30%) than those with chronic illness (12%) or dementia (5%). There was no difference in mean SM-EOLD in the last month of life by diagnosis (cancer 26.9 (8.6), dementia 26.5(8.2), chronic illness 26.9(8.6). Planned contrast analyses of individual items found people with dementia had more pain and those with cancer had less anxiety. There was no difference in mean CAD-EOLD scores in the week before death by diagnosis (total sample 33.7(SD 5.2), dementia 34.4(SD 5.2), chronic illness 33.0(SD 5.1), cancer 33.3(5.1)). Planned contrast analyses showed significantly more physical symptoms for those with dementia and chronic illness in the last month of life than those with cancer.ConclusionsOverall, symptoms in the last week and month of life did not vary by diagnosis. However, sub-group planned contrast analyses found those with dementia and chronic illness experienced more physical distress during the last weeks and months of life than those with cancer. These results highlight the complex nature of LTC end of life care that requires an integrated gerontology/palliative care approach.
Highlights
Little is known about the quality of end of life care in long-term care (LTC) for residents with different diagnostic trajectories
We report the results of post-mortem surveys with facility managers, registered nurses (RNs), and general medical practitioners (GPs), or nurse practitioners (NP) most closely associated with the care of the residents who died in a representative sample of LTC facilities
All resident identifying information was kept anonymous to researchers, the facility kept a record of resident name, national health identification (NHI) number and correlating study number
Summary
Little is known about the quality of end of life care in long-term care (LTC) for residents with different diagnostic trajectories. People who die of or with dementia often experience severe symptoms such as pain, fear, and anxiety, as well as clinical complications such as pneumonia and other infections, incontinence, pressure injury, cachexia and dehydration [9, 10]. They have difficulty communicating their needs and preferences, increasing the risk of suffering at the end of life [11]
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