This study analyzes trends in advance care planning (ACP) in the Advanced Interdisciplinary Movement Disorders Supportive Care (AIMS) Clinic for patients with late-stage parkinsonism.
Individuals with late-stage parkinsonism are frequently lost to care despite high symptom burden. Furthermore, hospice enrollment remains near 4% nationally for this population, which may be partially due to lack of ACP discussions with healthcare providers. Established in 2019, AIMS clinic patients and families meet with a movement disorders neurologist, neuropalliative physician, nurse, dietitian, and social worker at each visit. In addition to symptom management, AIMS ACP discussions focus on goals of care (GOC), healthcare power of attorney (HCPOA), and completion of physician orders for life-sustaining treatment (POLST) forms.
We analyzed longitudinal data from AIMS patients (October 2019 to December 2023), including demographics, diagnosis, ACP discussions, and mortality/hospice use, if applicable.
Among 175 patients (57.7% male, mean 72.8 years at visit 1 (SD 11.9), 12.6% Black/African American, 8.7% Latinx, 41.1% with Parkinson’s Disease, 19.4% with Dementia with Lewy Bodies, 24.6% with atypical parkinsonism), 62.1% discussed GOC, 67.2% discussed HCPOA, and 12.6% completed POLST at any visit. POLST discussions were more likely to occur in follow-up (n = 16, 72.7%) vs. initial AIMS visit (n = 6, 27.3%). Among 57 AIMS patients now deceased, 67.9% died with hospice in place.
Most patients seen in an interdisciplinary neuropalliative-movement clinic participated in GOC discussions, with formal POLST completion more likely to happen in follow-up visits, suggesting patients may need more time and relationship building to make pivotal end-of-life decisions. This clinic model yielded a higher rate of death with hospice in place compared to national averages (67.9% vs. 4%). Continuity of interdisciplinary care and revisiting ACP discussions may improve goal-concordant care. Ongoing work will explore associations between ACP, symptom burden, place of death, and caregiver burden.