Keiran K Tuck1, Lissa Brod2, John Nutt2, Erik K Fromme3. 1. Department of Neurology, Oregon Health & Science University, Portland, OR, USA tuck@ohsu.edu. 2. Department of Neurology, Oregon Health & Science University, Portland, OR, USA. 3. Division of Hematology & Medical Oncology, Knight Cancer Institute, Oregon Health & Science University, Portland, OR, USA.
Abstract
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.
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.
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