Factors Influencing Surrogate End-of-Life Healthcare Decision-Making for a Family Member with Alzheimer\u27s Disease

Alzheimer’s disease (AD), a chronic terminal disease, progressively impairs cognitive function resulting in deterioration of intellect, memory, and personality. With disease progression, the surrogate decision-maker becomes more involved in intervention choices and end-of-life (EOL) care, which may or may not be based on patients’ wishes or best practice guidelines. Yet surrogate decision outcomes involve important issues of medical futility, quality of life and death. The purpose of this study was to examine factors that influence surrogate health care decision-making for a family member during the terminal stage of AD. A descriptive, predictive design was used to address the research questions: 1.What is the relationship between surrogate gender and decision motives?; 2. Do structure (surrogate age and gender, attachment, interpersonal conflict), interactional context (elder image, caregiving beliefs), situational context (dementia level), and perception (burden) variables predict the type of decision motive (reward seeking, altruistic, distress reduction, punishment avoidance) used by surrogates’ when making healthcare decisions for their family member with AD?; 3. What healthcare decision choices do surrogate decision-makers make for a family member with AD? A convenience sample of 58 women (67.2%) and men surrogates between the ages of 43 to 84 years of age (M = 62.22, SD = 9.67) living in one urban and several rural cities in a southeastern state were recruited. Participants were recruited during facility meetings for families at 15 long-term care facilities and 1 dementia care assisted living facility. The majority of participants were Caucasian (84.5%). Questionnaires were distributed to participants at a facility meeting. After the study was explained, written informed consent was obtained. Each participant was asked to complete the questionnaire booklet and return via mail in a stamped self-addressed envelope to the researcher. Data were analyzed with descriptive and inferential statistics including frequencies, percentages, means, standard deviations, t-tests, and multiple linear regressions. Types of decision motives did not differ by gender. For the regression models, the independent variables included gender, feelings of attachment, interpersonal conflict with the elder, beliefs about caregiving, dementia level and caregiver burden. For the model predicting punishment avoidance decision motive, simultaneous multiple linear regression results indicated that the overall model significantly predicted the dependent variable. The regression model predicting reward seeking decision motive results indicated that the overall model significantly predicted the dependent variable. Two of the variables, dementia level and surrogate burden, significantly contributed to the variance in the reward seeking decision motive. When asked about the decisions they have been asked to make in the past 12 months, surrogates were asked to make life supportive interventions (pain management and nutritional supplements) more frequently than life extending interventions. The most frequent life extending interventions chosen in descending order of frequency include surgery, central line placement, and feeding tube placement. This study supports the importance of providing surrogate and family information on AD and end-of-life healthcare interventions in a therapeutic and supportive environment. Nursing implications address pain management of the cognitively impaired patient, advocacy for advance directive completion and non-futile care, and patient and family AD education. Health care implications include process for completion of an advance directive and the burden of medical futility