To investigate disparities in access to advance care planning (ACP) among a diverse Parkinson’s Disease (PD) population.

PD is the second most common progressive neurodegenerative disorder, with physical, cognitive, and emotional implications. ACP allows individuals with neurodegenerative disorders to make decisions regarding their future medical care. Prior studies suggest that under-represented populations face disparities in accessing ACP. Addressing these disparities is crucial to ensure equitable access to comprehensive care for all individuals.

We anonymously surveyed 250 PD patients and care partners from a diverse academic Movement Disorders clinic regarding their experiences with ACP. 

The mean age of the study participants was 67 (SD 9.47), and 40% were female. 92% self-identified as white, and 46.6% identified as Hispanic. Among all participants, 45.2% had previously designated a health care power of attorney (POA), while 19.4% had completed an advance directive (AD); 49.8% indicated they had not previously heard about ADs though 65.3% indicated it was either “very” or “somewhat” important to talk about ACP with their health care providers. 

We found significant differences between Hispanics and non-Hispanics regarding previous experiences with ACP. While 66.9% of non-Hispanics had previously completed a POA, only 20% of Hispanics had done so (p-value<0.001). Similarly, 31.7% of non-Hispanics indicated that they had previously completed an AD, while only 6.1% of Hispanics had done so (p-value <0.001).  When asked about the optimal time to bring up end-of-life decisions, 57.5% of non-Hispanics believed it was best to do so before getting sick, while the majority of Hispanics (60.9%) believed it was best after developing a life threatening or progressive illness (p-value 0.006).

ACP is important to patients with progressive disorders, though disparities in access to ACP remain. Investigating the reasons for these disparities is the first step to ensure equitable access for all patients.