title: "Thinking about it for somebody else": Alzheimer's disease research and proxy decision makers' translation of ethical principles into practice.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  METHODS
  Proxy decision makers (N = 40).
  
  
  METHODS
  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.
authors.affiliation: Department of Psychiatry, University of California, San Francisco, San Francisco. Electronic address: laura.dunn@ucsf.edu.
authors.forename: Laura B
authors.initials: LB
authors.lastname: Dunn
authors.forename: Stephanie Reyes
authors.initials: SR
authors.lastname: Fisher
authors.forename: Melinda
authors.initials: M
authors.lastname: Hantke
authors.forename: Paul S
authors.initials: PS
authors.lastname: Appelbaum
authors.forename: Daniel
authors.initials: D
authors.lastname: Dohan
authors.forename: Jenifer P
authors.initials: JP
authors.lastname: Young
authors.forename: Laura Weiss
authors.initials: LW
authors.lastname: Roberts
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000523:psychology*; D002986:Clinical Trials as Topic; D003657:Decision Making / Q000941:ethics*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D019727:Proxy / Q000523:psychology*; D011897:Random Allocation; D018570:Risk Assessment / Q000941:ethics; D011795:Surveys and Questionnaires; D020458:Third-Party Consent / Q000941:ethics*