Sex and Racial/Ethnic Differences in End-of-Life Care Preferences in Persons with Parkinson's Disease and Related Disorders.

BACKGROUND

In persons with Parkinson's disease (PD) and related disorders (PDRD), rates of end-of-life (EoL) hospitalization are greatest, and rates of hospice utilization lowest, among men and persons of color. Reasons for these differences are unknown.

OBJECTIVE

The aim of this study was to determine whether attitudes toward EoL care differ by sex and race/ethnicity in persons with PDRD.

METHODS

In this concurrent mixed-methods study, participants with PDRD were recruited from two movement disorders centers. Attitudes toward EoL care were determined using a modified Attitudes of Older People to End-of-Life Issues questionnaire and focus groups. Questionnaire responses were compared using Wilcoxon rank-sum and multinomial logistic regression models, adjusting for sociodemographic factors. Focus group transcripts were analyzed using a constant comparative analytic framework.

RESULTS

We recruited 255 participants with PDRD (45% female, 25% non-White). There were no differences in questionnaire responses between participants with PD and atypical parkinsonism. In adjusted models, women with PDRD were more likely than men to prefer religious/spiritual support at the end of life. Compared with White participants with PDRD, non-White participants were more likely to consider EoL hospitalization, less likely to consider medical aid in dying, and less familiar with palliative care. In four focus groups involving 14 questionnaire respondents, contributors to EoL decision-making included medical knowledge/information, personal experiences, family dynamics, religion/spirituality, and resources/cost.

CONCLUSIONS

EoL care preferences differ by sex and race/ethnicity in persons with PDRD. These preferences are influenced by multiple factors and may contribute to differential EoL outcomes, emphasizing the need for individualized, culturally competent EoL care. © 2025 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.