Preservation of the Capacity to Appoint a Proxy Decision Maker: Implications for Dementia Research

Archives of General Psychiatry, 2011

7 Pages Posted: 22 Nov 2015

See all articles by Scott Y. Kim

Scott Y. Kim

National Institutes of Health; University of Michigan at Ann Arbor

Jason Karlawish

University of Pennsylvania

Hyungjin Myra Kim

University of Michigan at Ann Arbor

Ian Wall

University of Wisconsin - Madison

Andrea Bozoki

Michigan State University

Paul S. Appelbaum

Columbia University

Date Written: 2011

Abstract

Research involving persons with impaired decision-making capacity (such as persons with Alzheimer disease [AD]) remains ethically challenging, especially when the research involves significant risk. If individuals incapable of consenting to research studies were able to appoint a research proxy, it would allow for an appointed surrogate (rather than a de facto surrogate) to represent the subject. To assess the extent to which persons with AD retain their capacity to appoint a research proxy. Interview study. Academic research. One hundred eighty-eight persons with AD were interviewed for their capacity to appoint a proxy for research and to provide consent to 2 hypothetical research scenarios, a lower-risk randomized clinical trial testing a new drug (drug RCT) and a higher-risk randomized clinical trial testing neurosurgical cell implants using a sham control condition (neurosurgical RCT). Categorical capacity status for each subject was determined by independent videotaped reviews of capacity interviews by 5 experienced psychiatrists. Categorical capacity determinations for the capacity to appoint a research proxy, capacity to consent to a drug RCT, and capacity to consent to a neurosurgical RCT. Data showed that 37.7% (40 of 106) of those deemed incapable of consenting to the drug RCT and 54.8% (86 of 157) of those deemed incapable of consenting to the neurosurgical RCT were found capable of appointing a research proxy. Only 7 of 186 (3.8%) were deemed capable of consenting to the neurosurgical RCT by all 5 psychiatrists. A substantial proportion of persons with AD who were thought incapable of consenting to lower-risk or higher-risk studies have preserved capacity for appointing a research proxy. Because few persons are found to be unequivocally capable of providing independent consent to higher-risk AD research, providing for an appointed surrogate even after the onset of AD, which might best be done in the early stages of the illness, may help address key ethical challenges to AD research.

Suggested Citation

Kim, Scott Y. and Karlawish, Jason and Kim, Hyungjin Myra and Wall, Ian and Bozoki, Andrea and Appelbaum, Paul S., Preservation of the Capacity to Appoint a Proxy Decision Maker: Implications for Dementia Research (2011). Archives of General Psychiatry, 2011. Available at SSRN: https://ssrn.com/abstract=2693781

Scott Y. Kim (Contact Author)

National Institutes of Health ( email )

Warren G. Magnuson Clinical Center
Bethesda, MD 20895-1156
United States

University of Michigan at Ann Arbor ( email )

500 S. State Street
Ann Arbor, MI 48109
United States

Jason Karlawish

University of Pennsylvania ( email )

Philadelphia, PA 19104
United States

Hyungjin Myra Kim

University of Michigan at Ann Arbor ( email )

110 Tappan Hall
855 S. University Ave
Ann Arbor, MI 48109
United States

Ian Wall

University of Wisconsin - Madison ( email )

716 Langdon Street
Madison, WI 53706-1481
United States

Andrea Bozoki

Michigan State University ( email )

Agriculture Hall
East Lansing, MI 48824-1122
United States

Paul S. Appelbaum

Columbia University ( email )

NY State Psychiatric Institute
1051 Riverside Drive Unit 122
New York, NY 10032
United States
646-774-8630 (Phone)
646-774-8633 (Fax)

Register to save articles to
your library

Register

Paper statistics

Downloads
7
Abstract Views
238
PlumX Metrics