Patient autonomy in advance care planning for Parkinson's disease: Systematic review with narrative synthesis

Individuals with Parkinson's disease (PD) often experience delays in initiating advance care planning (ACP) and palliative care (PC) which can impact their autonomy as cognitive function declines. Because patient autonomy and decision-making in ACP and PC for individuals with PD is insufficiently explored, this systematic review with narrative synthesis aims to fill this gap by reviewing the existing literature on these topics. It examines how awareness and timing influences ACP and PC implementation, how illness narratives shape decision-making and autonomy perceptions and the roles of caregivers and neurologists in supporting patient autonomy.

We conducted a systematic review with narrative synthesis of original research investigating ACP and PC in individuals with PD in accordance with PRISMA guidelines. The methodological quality of included studies was assessed using the Critical Appraisal Skills Programme checklists. Illness narrative types were categorized according to Arthur W. Frank's framework (chaos, restitution and quest narratives). Findings were synthesized narratively and organized thematically in line with the review objectives.

We included 42 studies using quantitative and qualitative methodologies involving 4154 individuals with PD and 2191 caregivers. Several themes were identified. Limited knowledge of ACP and PC explained its lower occurrence. ACP is often delayed due to uncertainty and misconceptions leading to late or crisis-driven discussions. Narrative medicine shows most individuals with PD share chaos narratives reflecting a focus on motor symptoms over autonomy. Lastly, individuals with PD expressed a need for greater autonomy support while ACP counseling is well received and improves understanding of care needs and end-of-life decisions.

Delays in initiating ACP and PC are associated with diminished autonomy in individuals with PD. Narrative medicine could help neurologists start ACP and PC discussions earlier, supporting autonomy and thereby aligning care with patient preferences.