Objective: To examine whether an interdisciplinary supportive care clinic model mitigates racial disparities in advance care planning (ACP), hospice utilization, and place of death among patients with advanced movement disorders.

Background: Racially minoritized patients with movement disorders experience well-documented inequities in ACP, hospice utilization, and place of death. Non-white patients are less likely to complete ACP and more likely to die in hospitals. Interdisciplinary neuropalliative care models may address structural and communication barriers contributing to these disparities; however, data evaluating their impact remain limited.

Method: We conducted a retrospective cohort study of 184 patients seen in the Advanced Interdisciplinary Movement Disorders Supportive Care (AIMS) Clinic (2019–2023). The AIMS model integrates a movement disorders neurologist, neuropalliative care specialist, social worker, dietitian, and nurse in shared visits with longitudinal follow-up through hospice coordination. Data collected included race, Hoehn and Yahr (H&Y) stage at referral, ACP completion, hospice utilization, and place of death. Associations between race (white vs. non-white) and outcomes were assessed using nonparametric and chi-square tests.

Results: Non-white patients with reported H&Y at referral (n=30) were at significantly later stages than white patients (n=88, p=0.004), suggesting delayed access to care. Overall ACP and hospice utilization rates did not differ significantly by race; however, place of death differed, with 50% of deceased non-white patients (n=8) dying in the hospital or emergency department compared to 9% of white patients (n=34, p=0.03).

Conclusion: In the AIMS Clinic, racial disparities in ACP completion and hospice utilization were not observed, contrasting with prior literature and suggesting that interdisciplinary care may promote equity in end-of-life planning. Nonetheless, non-white patients were referred later in their disease course and remained more likely to die in hospitals, underscoring persistent upstream inequities in access and timing of referral. Interventions focused on earlier referral to integrated care represent a critical opportunity to reduce disparities in advanced movement disorders. Future research should employ multi-site studies to determine reproducibility of these findings across different settings and populations.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/racial-disparities-in-end-of-life-care-among-patients-with-advanced-movement-disorders-in-an-interdisciplinary-supportive-care-clinic/