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Preferences for end-of-life treatment: concordance between older adults with dementia or mild cognitive impairment and their spouses

ABSTRACT Background: There is considerable debate about the ability of proxies to adequately reflect patients' preferences regarding end-of-life care, when patients are no longer capable of stating their preferences. This study evaluated concordance in end-of-life preferences between patients with mild cognitive impairment (MCI) or dementia and their spouses. Methods: A cross-sectional sample of 106 respondents (53 couples) was recruited in two psychogeriatric clinics. Bivariate analyses were conducted to evaluate the degree of agreement between the patients' preferences and those of their spouses. Results: Patients were more likely to opt for more treatment than their spouses. Moderate agreement between patients and spouses was evident for preferences regarding end-of-life decisions for the patients. There was little concordance between the wishes of spouses regarding their own preferences and what they wanted for the patient or what the patient wanted. When incorrectly predicting patients' preferences, spouses were more likely to ask for treatment. Conclusions: Our results show that regarding end-of-life preferences for patients, there is moderate agreement between patients and their spouses, but limited evidence for projection of spouses’ preferences on patients (i.e. spouse making a prediction based on own wishes). Potential differences in end-of-life preferences between older adults with MCI or mild dementia and their caregivers should be taken into consideration in the preparation of advance care planning.