Background: Studies on preferences regarding discussions on end-of-life care (EOLC), advance care planning (ACP), medical assistance in dying (MAiD), and brain donation have not yet been conducted in patients with atypical parkinsonism (AP).
Objective: The aim of this study was to know the preferences of patients with AP regarding discussions on EOLC, ACP, MAiD, and brain donation.
Methods: This cross-sectional study was conducted in patients clinically diagnosed with AP. An adapted questionnaire that assessed various potential factors that affect patients' preferences regarding EOLC and ACP was sent through postal mail to 278 patients.
Results: A total of 90 completed questionnaires were returned. Most patients preferred to discuss at the time of diagnosis information about the disease, its natural course, treatment options, and prognosis. In contrast, they preferred that EOLC and ACP be discussed when the disease has progressed. No demographic or disease-related factors were found to be predictors of the patient's preferences. Notably, most patients (63.3%) had previous actual discussions on these issues. Less than a third of patients were open to discussions about MAiD and brain donation; older age and the importance of spirituality and religion decreased the odds of discussing these.
Conclusions: Our study demonstrates that patients with AP have preferences regarding the timing of the discussion of the different themes surrounding EOLC and ACP. A needs-based approach in initiating and conducting timely discussions on these difficult but essential issues is proposed. A thorough explanation and recognition of a patient's beliefs are recommended when initiating conversations about MAiD and brain donation. © 2021 International Parkinson and Movement Disorder Society.
Keywords: advance care planning; atypical parkinsonism; brain donation; end-of-life care; medical assistance in dying.
© 2021 International Parkinson and Movement Disorder Society.