Missed Opportunities for Goals-of-Care Conversations in a Patient With End-Stage Juvenile Huntington's Disease: A...

IntroductionJuvenile Huntington's disease (JHD) is a rare, severe neurodegenerative disorder with early onset, high symptom burden, and a predictable trajectory toward advanced disability and premature death. Despite this, goals-of-care (GOC) conversations and advance care planning are often delayed, leading to reactive, crisis-driven decisions and increased emotional burden for families and clinicians.Case PresentationWe present a 30-year-old woman with genetically confirmed JHD, diagnosed at age 14, who declined progressively over more than 15 years. Despite longstanding neurological follow-up and repeated hospital admissions, palliative care referral occurred only 20 days before death. At evaluation she had complete dependence, profound cognitive impairment, severe dystonia, advanced dysphagia with gastrostomy, and recurrent aspiration. The absence of prior GOC discussions created uncertainty regarding hospital transfer, antibiotics, artificial nutrition and hydration, and palliative sedation. After retrospective review, interdisciplinary discussion, family meetings, and ethics consultation, the palliative care team established a comfort-focused plan that avoided further transfers, limited nonbeneficial interventions, and prioritized symptom control. Subcutaneous opioids, benzodiazepines, and anticholinergics relieved distress, rigidity, and secretions. The patient remained in the nursing facility until death.DiscussionLate palliative care integration limited anticipatory planning and shifted complex decisions into a stage with little room for deliberation, when cognitive and clinical deterioration constrained meaningful participation.ConclusionsJHD offers a useful model for early palliative care integration. Earlier outpatient referral and closer neurology-palliative care collaboration may enable longitudinal GOC conversations, anticipate complex decisions, and reduce the clinical, emotional, and ethical burden of advanced disease.