Data from: Framing advance care planning in Parkinson disease: patient and care partner perspectives

Objective: Advance care planning (ACP) is a core quality measure in caring
for individuals with Parkinson’s disease (PD) and there are no best
practice standards for how to incorporate ACP 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 patients and care partners perceive ACP as part of
clinical care: 1) personal definitions of ACP vary in the context of PD;
2) patient, relationship, and healthcare system barriers exist to engaging
in ACP; 3) care partners play an active role in ACP; 4) a palliative care
approach positively influences 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.