Document Type
Article
Publication Date
10-1-2008
Abstract
OBJECTIVES: To compare assessments of the decisional capacity of cognitively impaired patients by research assistants (RAs) and by family caregiver/proxies and to determine whether either or both groups judge capacity differently depending on the specific (hypothetical) research enrollment decision being made. DESIGN: Cross-sectional. SETTING: Three clinics, one each in Ohio, Kentucky, and Illinois. PARTICIPANTS: One hundred forty-nine patients with established dementia diagnoses and their caregiver/proxies. MEASUREMENTS: As part of a longer interview, patients were asked about future enrollment in five hypothetical research projects with varying risks and benefits. After patients reported each decision and reasons for that decision, RAs (using Applebaum and Grisso's four standards) indicated whether the patients were competent to make that decision on their own. In separate interviews, caregiver/proxies were asked for a similar appraisal based on life experience with the patient. RA and proxy judgments were compared. RESULTS: Capacity judgments by RAs and by caregiver/proxies differed according to specific project for most patients. Agreement between RA and caregiver/proxy judgments varied according to project, but agreement was only fair when tested using kappa (range in data 0.21-0.39). Caregiver/proxies appraised 50 patients as competent for all decisions, and RAs assessed 47 as so. Of these, only 24 were the same patients. CONCLUSION: If capacity were assessed anew for each enrollment decision, more potential participants could maintain authority in making those decisions.
Keywords
decisional capacity, dementia research, ethics
Language
English
Publication Title
Journal of the American Geriatrics Society
Grant
R01AG015317
Rights
© 2008, Copyright the Authors. This is the peer reviewed version of the article and may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions. This article may not be enhanced, enriched or otherwise transformed into a derivative work, without express permission from Wiley or by statutory rights under applicable legislation. Copyright notices must not be removed, obscured or modified. The article must be linked to Wiley’s version of record on Wiley Online Library and any embedding, framing or otherwise making available the article or pages thereof by third parties from platforms, services and websites other than Wiley Online Library must be prohibited.
Recommended Citation
Stocking, C.B., Hougham, G.W., Danner, D.D., Patterson, M.B., Whitehouse, P.J. and Sachs, G.A. (2008), Variable Judgments of Decisional Capacity in Cognitively Impaired Research Subjects. Journal of the American Geriatrics Society, 56: 1893-1897. https://doi.org/10.1111/j.1532-5415.2008.01922.x
Manuscript Version
Accepted Manuscript