“Thinking About It for Somebody Else”: Alzheimer's Disease Research and Proxy Decision Makers' Translation of Ethical Principles Into Practice

• Published in: The American journal of geriatric psychiatry 2013-04, Vol.21 (4), p.337-345
• Main Authors: Dunn, Laura B., M.D, Fisher, Stephanie Reyes, B.A, Hantke, Melinda, B.A, Appelbaum, Paul S., M.D, Dohan, Daniel, Ph.D, Young, Jenifer P, Roberts, Laura Weiss, M.D
• Format: Article
• Language: English
• Subjects: Adult; Aged; Aged, 80 and over; Alzheimer Disease - psychology; Alzheimher disease; clinical trials; Clinical Trials as Topic; decision making; Decision Making - ethics; ethics; Female; Humans; Internal Medicine; Interviews as Topic; Male; medicological issues; Middle Aged; Proxy - psychology; Random Allocation; Risk Assessment - ethics; surrogate consent; Surveys and Questionnaires; Third-Party Consent - ethics
• ISSN: 1064-7481; 1545-7214
• DOI: 10.1016/j.jagp.2012.11.014

Objectives Ethical guidelines suggest that, when enrolling patients with dementia in research, alterative decision makers (proxies) should base their decision on a “substituted judgment” of how the patient would have decided. If unable to make a substituted judgment, proxies are asked to decide on the basis of the patient's best interests. This mixed-methods study is the first to examine explicitly whether and to what degree proxies differentiate between these two approaches and what considerations influence their mode of decision making. Design Interview study regarding enrollment of relative in hypothetical clinical trial of an investigational drug for Alzheimer disease. Participants were randomized to respond to questions about one of four hypothetical clinical trials that differed by levels of described risk and potential benefit. Participants Proxy decision makers (N = 40). Measurements Open-ended and rating-scaled items. Results Half of the proxies agreed with both of two rating-scaled items asking about different approaches to decision making—that is, agreeing that they would decide on the basis of how their relative would have decided and agreeing that they would decide on the basis of what they believed was in their relative's best interests. Narrative responses elaborated on themes within the following three major domains: Substituted judgment, best interests, and weighing substituted judgment and best interests. Substituted judgment was framed as honoring the patient's wishes and values. Best interests was described as a perceived duty to maintain quality of life and avoid burdens or risks. Weighing the two standards emerged as a challenging yet important, way of honoring wishes while maintaining quality of life. An unexpected theme was the attempt by alternative decision makers to discern their loved one's current versus premorbid research preferences. Conclusions Tensions exist between abstract ethical principles regarding decision-making “standards” and their translation into research decisions.