Understanding of Palliative Care Among Parkinson Disease Patients at the University of Florida

Congratulations to Drs. Patterson, Almeida, McFarland, Okun and Malaty on the publication of “Understanding of Palliative Care Among Parkinson Disease Patients at the University of Florida,” in the April 18th edition of Neurology.


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: Palliative care scales show that advanced PD patients suffer as much or more than metastatic cancer patients with symptoms including constipation, anxiety, dysphagia, and pain. Palliative care in PD is a potentially useful but underutilized resource. Deficits in patient and caregiver understanding are likely contributors.

Design/Methods: We offered a questionnaire to PD and parkinsonism patients, of any disease stage, seen at our center over a 6-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”. We defined “advance directive” as a living will, healthcare power of attorney, or advance directive itself.

Results: Responses among the 153 questionnaire respondents ranged from 27–55% correct, 1–13% incorrect, and 37–61% unsure. Those with less formal education were more likely to select “unsure.” Patients with college education or beyond were more likely to answer the questions definitively and consequently had both higher correct and incorrect response rates than those with less formal education. Advance directive information was available in 141 patients. Overall, 82% of patients reported having an advance directive. This increased to 84% among those with disease duration ≥5 years; 86% in those who had completed college; and 95% in those ≥70 years old. Men and women were equally likely to have an advance directive.

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, there is a gap in knowledge about palliative care which supports the hypothesis that underutilization may be partially due to lack of understanding.