Speaking of research advance directives: Planning for future research participation
| Autor: | Carol Stocking, Deborah D. Danner, Gavin W. Hougham, Peter J. Whitehouse, Marian B. Patterson, Greg A. Sachs |
|---|---|
| Rok vydání: | 2006 |
| Předmět: |
Male
Risk Patients Decision Making Drug Evaluation Preclinical MEDLINE Administration Oral Spinal Puncture White People Proxy (climate) Interpersonal relationship Phlebotomy Moderate dementia Humans Medicine Interpersonal Relations Mental Competency Psychological testing Genetic Testing Third-Party Consent Aged Aged 80 and over Clinical Trials as Topic Psychological Tests Actuarial science business.industry Communication Brain Middle Aged Directive Proxy Black or African American Patient Rights Personal Autonomy Dementia Female Neurology (clinical) Advance Directives business Social psychology Stem Cell Transplantation Dyad |
| Zdroj: | Neurology. 66:1361-1366 |
| ISSN: | 1526-632X 0028-3878 |
| DOI: | 10.1212/01.wnl.0000216424.66098.55 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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