Grant: Doctoral Research Award - PA: Psychosocial Research Parkinson's Disease

Parkinson's disease (PD) patients and their loved ones are often faced with difficult decisions related to interventions for pain management, artificial nutrition and hydration, mobility and, or cognition near end-of-life (EOL). The high degree of variability in the progression of this neurodegenerative disease has led to calls for better guidance on what stage advance care planning (ACP) should be initiated. The goal of ACP is to support patients to make future healthcare plans and/or appoint a substitute decision maker should they lose capacity to make their own healthcare decisions. Despite support for ACP and evidence that the process promotes quality EOL care, a recent Canadian study showed that EOL communication with clinicians and documentation of patients' wishes remain inadequate. This qualitative study will involve interviews with 20 PD patients, as well as 20 of their caregivers and 20 of their clinicians to address the following questions: 1. What do PD patients, their caregivers, and clinicians view as barriers and facilitators to engaging in EOL care planning, 2. How does the relationships between patients and their caregivers, as well as clinicians, affect their EOL care planning. Follow-up interviews with each patient participant will be conducted 6 months following the first interview, depending on the progression of their illness. The goal of this study will be to generate person-centered best practice recommendations on how, who, and when to engage Parkinson's disease patients and caregivers in advance care planning for end-of-life care.