Speaking of research advance directives - Planning for future research participation

Department of Medicine, University of Chicago, Chicago, Illinois, United States
Neurology (Impact Factor: 8.3). 06/2006; 66(9):1361-6. DOI: 10.1212/01.wnl.0000216424.66098.55
Source: PubMed

ABSTRACT 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.
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.
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.
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.

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Available from: Gavin W Hougham, Aug 04, 2014
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    • "That is, many individuals endorse their surrogates making the decision that seems best to the surrogate at the time, independent of the extent to which it is consistent with the individual's previously expressed wishes. Unfortunately, the same studies find that many others are not willing to give their surrogates leeway (Karlawish et al., 2009; Kim et al., 2009; Wendler et al., 2002; Stocking et al., 2006). One study found that 17–26% of older Americans would allow their surrogates complete leeway, 38–41% would allow some leeway, and 33–45% would allow no leeway at all (Kim et al., 2009). "
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    • "However, communication with carers of people with dementia suggests that they are often surprised at the choices their relatives make with regard to diet or participation in activities, compared to the past, so it is difficult to ensure that other values and preferences remain the same with the experience of dementia. Several studies have highlighted the potential conflict that can exist between people with dementia and their proxies when consenting to research (Buchanan & Brock 1990, Sachs et al. 1994, Stocking et al. 2006). Being a proxy decision maker can also be a burdensome activity for some care givers (Sugarman et al. 2001), and Bartlett and Martin (2002) draw attention to the lack of practical guidance on the best way to involve carers in the process. "
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    • "In the case of at-risk persons who evidence no symptoms, this timeframe allows individuals to consider and even consent to prospective participation and renew that consent if participation in dementia research becomes an imminent or likely possibility. d) Uptake of ARDs: Current uptake of ARDs is low (Muthappan et al., 2005; Stocking et al., 2006). Yet, while this may result in missed research opportunities, this article advocates the use of ARDs as an option for those who do not wish to defer the principal decision regarding research participation to a surrogate. "
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