Objective: The objective of this study was to derive a baseline understanding of palliative care among the Parkinson disease (PD) patient population at a single movement disorders center.

Background: Advanced PD patients suffer similarly to metastatic cancer patients when measured on palliative care scales, with symptoms including constipation, anxiety, dysphagia, and pain. Palliative care in PD is a potentially useful but underutilized resource. The reason for this is likely multifactorial, but deficits in patient understanding of palliative care likely contribute.

Methods: We offered a questionnaire to PD and parkinsonism patients, of any disease stage, seen at our center over an 8-week period. The questionnaire included 15 basic items assessing knowledge of palliative care and one item assessing whether patients had advance directives. Response options on the 15-item quiz included “true”, “false” and “unsure”.  

Results: Advance directive information was available in 204 patients. Our study population was 61% male, 92% Caucasian, 78% married, 67% religious or spiritual, 90% havingv children, and 58% having completed college or beyond. 18% were < age 60, 39% were in their 60’s, and 42% were 70 or older. Groups were relatively equally divided between symptom duration 5 years or less, 6-10 years, and >10 years.

80% of patients reported having an advance directive (71% had a living will, 55% had a healthcare power of attorney, and 55% had an advance directive itself). Age was the strongest predictor of having an advance directive. Other positive predictors were higher level of education, married relationship status, presence of children, and Caucasian race. Gender was not predictive and, surprisingly, duration of disease was not predictive.

Responses on palliative care questions among the 228 questionnaire respondents ranged from 29-59% correct, 1-13% incorrect, and 39-62% unsure. Those with less formal education were more likely to select “unsure” but even the college educated patients answered ‘unsure” 28-61% of the time.  Patients with college education or beyond were more likely to respond correctly.

Conclusions: A surprising majority of patients at our tertiary movement disorders center had an advance directive, implying that patients are anticipating and planning for the future. Despite this finding, there was a considerable gap in knowledge about palliative care which supported the hypothesis that underutilization may at least partially be due to lack of understanding.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/palliative-care-in-parkinson-disease/