Information and Advance Care Directives for End-of-Life Residents with and without Dementia in Nursing Homes

Abstract

Background: Communication and advance care directives may be affected by the presence of dementia. We sought to describe the information and end-of-life preferences provided to nursing homes residents and their families. Methods: Trained nurses collected information from 124 residents randomly selected with palliative care needs from eight nursing homes. Results: A total of 54.4% of the residents with dementia had been provided with information about their state of health, compared to 92.5% of the residents without dementia (p < 0.01); family members exhibited no differences regarding information (p = 0.658), regardless of whether the resident was cognitively impaired. Most advance care interventions remained unexplored, except for cases where a transfer to hospital (81.5%) or serotherapy (69.4%) was desired. Decisions regarding palliative sedation (p = 0.017) and blood transfusion (p = 0.019) were lower among residents with dementia. Conclusions: Residents, especially residents with dementia, are provided with limited information and their preferences are inadequately explored.