Empirical assessment of a research advance directive for persons with dementia and their proxies.
OBJECTIVE
To evaluate a research advance directive for persons with established dementia diagnoses and their family caregivers or proxies.


METHODS
Prospective randomized, controlled trial.


METHODS
Three clinics, one each in Ohio, Kentucky, and Illinois.


METHODS
At the end of separate interviews about enrollment choices in five types of hypothetical research projects, 149 persons with established dementia diagnoses and their family proxies were randomized to jointly complete the Planning Ahead Together (PAT) document, a research advance directive (n=69) or to remain in the control group (n=80).


METHODS
The directive was assessed at two points: immediately after sample members received naturally occurring invitations to participate in other studies and again 2 years after initial enrollment.


METHODS
Personal enrollment rates, reported ease of enrollment decision for patients and proxies, and proxy comfort were compared between the experimental and control groups.


RESULTS
Forty-one dyads were reinterviewed immediately after consent discussions for other trials. Forty-seven patients and 106 proxies were interviewed at 2-year follow-up. There was no evidence immediately after a trial enrollment opportunity or in the follow-up interview that the research advance directive (PAT) assisted patients or proxies. Enrollment rates, decision ease, and proxy comfort and certainty were similar in the PAT and control groups.


CONCLUSIONS
Patient and proxy experience making hypothetical decisions in the interview may have affected enrollment decisions by the PAT and control groups. Although the low number of recruitment attempts and the natural attrition of the geriatric population limit conclusions about effectiveness that may be drawn from this unique data set, the feasibility of a research advance directive is clearly demonstrated.
Stocking
Carol B
CB
Section of Geriatrics, Department of Medicine, University of Chicago, Chicago, Illinois 60637, USA. cstockin@medicine.bsd.uchicago.edu
Hougham
Gavin W
GW
Danner
Deborah D
DD
Patterson
Marian B
MB
Whitehouse
Peter J
PJ
Sachs
Greg A
GA
D016223:Advance Directives / Q000941:ethics / Q000523:psychology*; D000368:Aged; D000369:Aged, 80 and over; D003657:Decision Making; D003704:Dementia / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D019727:Proxy; D012106:Research; D013997:Time Factors; D014481:United States