Â鶹´«Ã½Ó³»­

Â鶹´«Ã½Ó³»­

Explore the latest content from across our publications
Join The Â鶹´«Ã½Ó³»­

Log In

Forgot Password?
Create New Account

Loading... please wait

Abstract Details

Prognosis and preferences for communication about end-of-life care in atypical parkinsonism
Movement Disorders
Movement Disorders Posters (7:00 AM-5:00 PM)
185

Objective: To know the preferences of patients with atypical parkinsonism (AP) regarding discussions on end-of-life care (EOLC), advance care planning (ACP), medical assistance in dying (MAiD), and brain donation for research.
Background: End-of-life suffering is common in atypical parkinsonism due to loss of function and mobility, pain and other symptoms. Discussions about EOLC, however, are often difficult and uncomfortable for both physicians and patients.

 

Methods: An adapted questionnaire that assessed various potential factors that affect patients' preferences regarding EOLC and ACP was sent to 278 patients through postal mail.

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 at a later time. No demographic or disease-related factors were found to be predictors of the patient’s preferences. Of note, most patients (63.3%) had previous actual discussions on these issues. Moreover, most patients were amenable to discuss MAiD and brain donation at any point during their disease course, but mostly when the disease worsens. Older age and the importance of spirituality and religion decreased the odds of discussing MAiD and brain donation.

Conclusion: Our study demonstrates that patients with AP have preferences similar to those of PD patients concerning the timing of the different themes surrounding EOLC and ACP. A needs-based approach in initiating these discussions is proposed to guide health care professionals in conducting these difficult but essential discussions. A thorough explanation and recognition of a patient’s beliefs are recommended when initiating conversations about MAiD and brain donation.
Authors/Disclosures
Gerard Raimon Saranza, MD
PRESENTER 		Dr. Saranza has nothing to disclose.
No disclosure on file
Anthony E. Lang, MD, FÂ鶹´«Ã½Ó³»­ (Toronto Western Hospital) Dr. Lang has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for AbbVie, Amylyx, Aprinoia, Biogen, BioAdvance, Biohaven, BioVie, BlueRock, BMS, Denali, Janssen, Lilly, Pharma 2B, Sun Pharma, and UCB. Dr. Lang has received personal compensation in the range of $50,000-$99,999 for serving as an Expert Witness for medicolegal cases related to paraquat. The institution of Dr. Lang has received research support from AbbVie. Dr. Lang has received intellectual property interests from a discovery or technology relating to health care. Dr. Lang has received publishing royalties from a publication relating to health care.