Objective: Determine attitudes toward advance care planning among Cuban-American people with Parkinson’s disease (PWP).

Background: Advance care planning (ACP) is a process that allows individuals to make decisions regarding their future medical care and is an essential aspect of patient care when addressing chronic illnesses such as Parkinson’s disease [1]. However, racial and ethnic minority populations, including Hispanic PWP, often face disparities in access to ACP [2][3]. To our knowledge, no prior studies have investigated barriers within a Cuban-American population.

Method: We anonymously surveyed 250 patients and caretakers from the University of Miami Movement Disorders clinic with questions regarding their understanding of ACP. Initial analysis compared responses between Hispanic and non-Hispanic PWP, which we previously reported [3]. We then performed a sub-analysis to evaluate responses between Cuban and non-Cuban Hispanic PWP. An ordinal logistical regression was used to control for level of education and income.

Results: Of the 250 patients surveyed, 116 (46.6%) of them self-identified as Hispanic. Among the Hispanic respondents, 54 (46.6%) indicated Cuba as their country of birth/origin. In terms of health care power of attorney, there were no significant differences between Cuban and non-Cuban Hispanic PWP; the majority of patients within each group, 45.3% and 51.6% respectively, responded that they had heard about but not completed this designation. Similarly, 61.5% of Cuban and 61.9% of non-Cuban Hispanic PWP indicated that they had not heard about advance directives. When asked about the best time to bring up end-of-life decisions, there was a significant difference with 15.4% of Cuban patients selecting the option “if dying” versus only 3.2% of the other Hispanic respondents (p = 0.048). Lastly, we found that the non-Cuban Hispanic population was 2.29 times more likely to talk about supportive care or advance care planning with their healthcare provider when compared to the Cuban respondents (OR = 2.290; CI = [1.119,4.690]).

Conclusion: The results of our study provide insight into possible barriers for ACP, including a preference to discuss ACP later in the disease course for a larger percentage of Cuban-American PWP and a lower likelihood of discussing ACP with healthcare providers. Future directions include additional research to evaluate this disparity and develop interventions.

References: [1] Kluger BM, Shattuck J, Berk J, Sebring K, Jones W, Brunetti F, Fairmont I, Bowles DW, Sillau S, Bekelman DB. Defining Palliative Care Needs in Parkinson’s Disease. Mov Disord Clin Pract. 2018 Nov 16;6(2):125-131.

[2] Hong M, Yi EH, Johnson KJ, Adamek ME. Facilitators and Barriers for Advance Care Planning Among Ethnic and Racial Minorities in the U.S.: A Systematic Review of the Current Literature. J Immigr Minor Health. 2018 Oct;20(5):1277-1287.

[3] Abou-Ezzi M, Hernandez L, Moore HM, Vargas-Para S, Cruz A, Shpiner DS. Advance care planning in under-represented populations with Parkinson’s Disease: addressing disparities in end-of life care [Poster Abstract]. 2024 American Academy of Neurology, Denver, CO, United States.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/assessing-barriers-to-advance-care-planning-in-parkinsons-disease-within-a-cuban-american-population/