Stiff Person Syndrome in the Hospice Patient: A Case Report and Discussion

Abstract

Stiff Person Syndrome (SPS) is a rare, progressive autoimmune neurological disorder characterized by painful spasms, muscle rigidity, and heightened sensitivity to external stimuli. Management often relies on therapies that fall outside standard hospice formularies, creating challenges in end-of-life care for affected individuals. We present the case of a 57-year-old woman with metastatic colorectal cancer and SPS whose primary concern in transitioning to hospice was the risk of symptom destabilization if standard neurological treatments, including intravenous immunoglobulin and intrathecal baclofen, were discontinued. Through close interdisciplinary collaboration among palliative care, neurology, and the hospice team, an individualized plan of care was developed that preserved access to symptom-modifying treatments while aligning with the hospice philosophy. Environmental and pharmacologic strategies—including diazepam, levetiracetam, and anticipatory planning—were employed to address evolving symptoms, resulting in effective symptom control and avoidance of hospital readmission. This case highlights the need for flexible, patient-centered approaches in hospice care for rare neurological conditions like SPS. Continuation of disease-specific therapies for symptom palliation can be ethically and clinically appropriate when integrated with clear goals of care. Adaptable interdisciplinary models are essential to attend to quality of life and support care that is in alignment with patient values at the end of life.