Palliative Care Resource Utilization in Patients With Prion Disease
In a retrospective study published in Neurology, researchers examined symptoms, referral patterns, and delivery of palliative care for patients with prion disease, which includes the most common form, Creutzfeldt-Jakob disease. Nearly all patients had symptoms that could benefit from supportive care, yet more than a third were never referred for specialty palliative services, and when care was provided, it was often late, mostly through hospice. The findings underscore the need for earlier referral to palliative care to manage symptoms, clarify goals of care, support advance care planning, and guide caregivers.