Advance care planning in Hispanic populations with Parkinson’s Disease: Investigating disparities in end-of life care

Introduction

Advance care planning (ACP) is a tool for optimizing end-of-life care and is an important aspect of healthcare for people with Parkinson’s disease (PD). However, there may be disparities in access to ACP based on race and/or ethnicity.

Methods

We conducted a cross-sectional survey of people with PD and care partners from a diverse academic Movement Disorders clinic regarding familiarity with ACP and sociodemographic factors. We compared prior experiences with ACP, with a primary outcome examining prior completion of healthcare power of attorney (HPOA) and advance directives (AD) among Hispanics and non-Hispanics in the cohort. Univariate analysis was utilized to compare cohort demographics. A multinomial logistic regression was performed to control for possible confounders.

Results

250 participants completed the survey, including 116 (46.4 %) who self-identified as Hispanic and 127 (50.8 %) non-Hispanic. Only 20 % of Hispanic participants had previously completed HPOA documentation versus 66.9 % non-Hispanics (p < 0.001). The rates of completion for AD were 6.1 % and 31.7 %, respectively (p < 0.001). Hispanic respondents were less likely to have heard about these documents and more likely to wait until later in the disease course to discuss ACP, despite a majority viewing these discussions as important. These trends remained when controlling for several demographic variables; however, age and preferred language of survey emerged as potential confounders for some answer choices.

Conclusions

Hispanic people with PD may be less likely to utilize ACP than their non-Hispanic counterparts. Awareness of these resources or cultural factors may play a role and should be explored further in future studies.