Preferences of patients with Parkinson's disease for communication about advanced care planning.
BACKGROUND
Despite shortening life, Parkinson's disease (PD) is often not considered "terminal." Uncertainty exists about when to discuss end-of-life planning.


METHODS
A survey was sent to patients with PD assessing attitudes toward the timing and initiation of discussions regarding their disease. Data were analyzed for patient preferences regarding communication.


RESULTS
Of 585 surveys, 267 were returned. Ninety-four percent of patients wanted prognosis and treatment information early. Half of the patients wanted to discuss advanced care documents early. Some wanted early discussions about end-of-life care planning (27%) or end-of-life care options such as hospice (21%). The majority felt shared responsibility for initiating discussions about life expectancy, advance care documents, and end-of-life care planning.


CONCLUSIONS
Preferences regarding end-of-life discussions vary. Consequently, neurologists should ask patients about their preferences for this information and offer discussion periodically.
Department of Neurology, Oregon Health & Science University, Portland, OR, USA tuck@ohsu.edu.
Keiran K
KK
Tuck
Department of Neurology, Oregon Health & Science University, Portland, OR, USA.
Lissa
L
Brod
Department of Neurology, Oregon Health & Science University, Portland, OR, USA.
John
J
Nutt
Division of Hematology & Medical Oncology, Knight Cancer Institute, Oregon Health & Science University, Portland, OR, USA.
Erik K
EK
Fromme
D000293:Adolescent; D000328:Adult; D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D003142:Communication; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000523:psychology / Q000628:therapy*; D057240:Patient Preference / Q000523:psychology / Q000706:statistics & numerical data*; D010817:Physician-Patient Relations; D055815:Young Adult
Parkinson’s disease; advanced care planning; palliative care; patient preferences; survey