Preferences for Communication About End‐of‐Life Care in Atypical Parkinsonism

Abstract

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

Disease modification in Parkinsonism: obstacles and ways forward

“…In a recent international multicenter study, concepts for palliative care interventions were studied and palliative care training programs were developed (Gatsios et al 2021 ; Meinders et al 2021 ). A survey on aPS patients revealed that this patient group prefers an early conversation about diagnosis with information about the disease, natural history, prognosis, and treatment options (Saranza et al 2021 ). These aPS patients also want to have a conversation about end of life and advance care planning in later stages of the disease (Saranza et al 2021 ).…”

“…A survey on aPS patients revealed that this patient group prefers an early conversation about diagnosis with information about the disease, natural history, prognosis, and treatment options (Saranza et al 2021 ). These aPS patients also want to have a conversation about end of life and advance care planning in later stages of the disease (Saranza et al 2021 ). Advance care planning concepts are necessary to improve clinical care (Lum et al 2019 ; Seeber et al 2019 ).…”