CONFRONTING THE CHALLENGES OF HUNTINGTON'S DISEASE: THE IMPORTANCE OF PALLIATIVE TEAM AND FAMILY BASED CARE. (11th November 2018)

• Record Type: Journal Article
• Authors: Ruhi, M; Lepcha, N; Cobbs, E; Kaiser, R
• Is Part Of: Innovation in aging. Volume 2(2018)Supplement 1
• Page Start: 496
• Page End: 496
• Publication Date: 2018-11-11
• Subjects: Aging -- Periodicals; Gerontology -- Periodicals; 612.67
• DOI: 10.1093/geroni/igy023.1848
• Languages: English
• ISSNs: 2399-5300

Abstract

Abstract: Huntington's Disease (HD) is an incurable, progressive inherited disorder causing choreiform movements, ataxia, dysphagia, cognitive and behavioral changes, and death. A 43-year-old Veteran with a family history of HD developed depression, suicidal ideation and violent behavior. He received sertraline and aripiprazole. Involuntary tremors developed, persisting after discontinuing caffeine and aripiprazole. HD was diagnosed by genetic testing. Clonazepam, haloperidol and tetrabenazine were ineffective and discontinued. He received psychotherapy, acupuncture and massage therapy and remained at home, with caregiver assistance. He fell repeatedly and became functionally dependent. His wife (his primary caregiver) became overburdened. He was transferred to a VA Community Living Center. An interdisciplinary team (IDT)—a geriatrician, neurologist, psychologist, palliative physician, nurse, physical therapist, occupational therapist, and chaplain—created a successful care plan with him and his family. Integrative and psychological therapies were continued. A low bed with padded rails and a sitter were provided. Deutetrabenazine, prescribed for chorea, resulted in decreased choreiform movements, improving skin ulcers, clearer vocalization, and increased appetite. Morphine and gabapentin provided pain relief. He and his family chose to maximize comfort, discontinue his feeding tube, and begin a new plan for hand feeding per Speech Therapy. With marked improvement in his function, the family is considering his discharge to home in the near future. HD poses considerable challenges for symptom relief. An IDT is vital to address multifaceted symptoms and support patients and caregivers. Early adoption of team-based, patient- and family-centered palliative care may improve management, decrease caregiver burden, and increase patient and family satisfaction.