Surrogate decision makers' understanding of dementia patients' prior wishes for end-of-life care.
OBJECTIVE
This study examines how surrogate decision makers for dementia patients developed an understanding of patient preferences about end-of-life (EOL) care and patient wishes.


METHODS
Semistructured interviews were conducted with 34 surrogate decision makers for hospice-eligible nursing home patients with dementia. The data were content analyzed.


RESULTS
Most surrogates reported that patients had previously completed an advance directive (59%), discussed preferences for EOL care (56%), or done both (38%). Catalysts for and barriers to completing an advance directive or having EOL care discussions included factors that were both intrinsic and extrinsic to the patient. The most commonly reported wish for EOL care was to not be kept alive by "machines" or "extraordinary measures."


CONCLUSIONS
Health care providers may be able to assist patients and families by normalizing discussions of dying, encouraging advance care planning, helping them identify goals for EOL care, and providing information to support treatment decisions consistent with patients' wishes.
Black
Betty S
BS
Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, 600 North Wolfe Street, Meyer Building, Room 279, Baltimore, MD 21287, USA. bblack@jhmi.edu
Fogarty
Linda A
LA
Phillips
Hilary
H
Finucane
Thomas
T
Loreck
David J
DJ
Baker
Alva
A
Blass
David M
DM
Rabins
Peter V
PV
D032722:Advance Care Planning; D024362:Advance Directive Adherence; D016223:Advance Directives; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D032882:Comprehension; D003657:Decision Making; D003704:Dementia; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D019727:Proxy; D013727:Terminal Care; D014481:United States