Background Advance care planning (ACP) is a new core quality measure in caring for individuals with Parkinson’s disease (PD) and there are no best practice standards for how to incorporate the ACP process into PD care. This study describes patient and care partner perspectives on ACP to inform a patient and care partner-centered framework for clinical care.

Methods Qualitative descriptive study of 30 patients and 30 care partners affected by PD within a multi-site, randomized clinical trial of neuropalliative care compared to standard care. Participants were individually interviewed about perspectives on ACP, including prior and current experiences, barriers to ACP, and suggestions for integration into care. Interviews were analyzed using theme analysis to identify key themes.

Results Four themes illustrate how ACP is perceived and integrated into clinical care: 1) variation in personal definitions of ACP in the context of PD; 2) barriers to engaging in ACP with PD; 3) role of care partners as active participants in ACP; and 4) influence of a palliative care approach on ACP. Taken together, the themes support clinician initiation of ACP discussions and interdisciplinary approaches to help patients and care partners overcome barriers to ACP.

Conclusions ACP in PD may be influenced by patient and care partner perceptions and misperceptions, symptoms of PD (e.g. apathy, cognitive dysfunction, disease severity), and models of clinical care. Optimal engagement of PD patients and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care.