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From the Section of Geriatrics (C.B.S., G.W.H., G.A.S.) and MacLean Center for Clinical Medical Ethics (C.B.S.), Department of Medicine, University of Chicago Medical Center, Chicago, IL; University of Kentucky (D.D.D.), Lexington, KY; and Case Western Reserve University (M.B.P., P.J.W.), Cleveland, OH.
Address correspondence and reprint requests to Dr. Carol B. Stocking, MacLean Center for Clinical Medical Ethics, Department of Medicine, MC 6098, University of Chicago Medical Center, 5841 S. Maryland Avenue, Chicago, IL 60637; e-mail: cstockin{at}medicine.bsd.uchicago.edu
Objective: To examine one model of research advance directive as a possible way to reduce the mismatch between patient and proxy choices and also to learn more about how patients with mild to moderate dementia may want to keep decision making or cede it to their proxies in the future.
Methods: Separate interviews were conducted with 149 dyads of dementia patients and family proxies about future enrollment in five types of research. Subsequent joint interviews were conducted with 69 of those dyads to discuss their separately articulated decisions and ask whether the patient prefers future enrollment decisions to be made as he or she directs today or as the proxy deems best in the future.
Results: Patients chose to cede future decision making to their proxies in 82.9% of the trials. Patients ceded decisions to their proxies in 80.7% of those trials about which the dyad had given opposite answers (n = 74, 49.7%). Patients who had expressed discomfort about the prospect of the proxy making an enrollment decision in a trial (n = 49, 32.9%) ceded decision making to their proxies in 45.7% of those trials.
Conclusions: Both patients and proxies were willing to discuss future research enrollment in the context of an advance directive for research. Such a document may be helpful to proxies and researchers in the future to judge the types of research and associated risks patients are willing to enroll in. Although most patients willingly cede future decisions to their proxies, a sizeable minority do not wish to do so.
Editorial, see page 1298
See also page 1367
Supported by grant RO1AG15317 from the National Institute on Aging; partial funding also provided by the National Institute of Mental Health.
Disclosure: The authors report no conflicts of interest.
Received September 5, 2005. Accepted in final form February 20, 2006.
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