Treatment decisions regarding hospitalization and surgery for nursing home residents with advanced dementia: The CareAD Study

Background: Dementia differs from other terminal illnesses both in its slow progression and the fact that patients and family members often do not perceive it as a cause of death. Furthermore, because decisional incapacity is almost universal in patients with advanced dementia, decisions must be made by surrogates. However, little is known about the factors that influence how surrogates make decisions for persons with late-stage dementia. Methods: The setting was the first wave of a study of patients with advanced dementia in three Maryland nursing homes (The Care of Nursing Home Residents with Advanced Dementia Study). Of 125 consented participants, 123 residents and their surrogates provided adequate information and agreed to interviews and medical record reviews. Bivariate analysis and logistic regression models were used to explore whether variables related to demographics, illness, communication and surrogate background were associated with surrogate decisions to not provide aggressive treatments (i.e. hospitalization or surgery). Results: Treatment decisions regarding aggressive medical care had been made by 81% of surrogates over the preceding 6 months. In bivariate analysis the following factors were significantly associated with not providing aggressive care: resident and surrogate of white race, older surrogate age, worse resident medical illness, worse surrogate perception of resident quality of life, presence of a 'do not hospitalize' order (DNH), and more contact with nurses. In the multivariate analysis, resident white race and presence of a DNH were significant predictors of surrogate decisions to not provide aggressive treatments. Treatment decisions were not associated with surrogate relationship or religiosity. Conclusions: Treatment decisions for individuals with advanced dementia are mostly strongly associated with the patient's race and presence of DNH and less so with changeable features of illness or environment.