ABSTRACT: Huntington disease (HD) is a genetic neurodegenerative disorder that progresses over decades and is ultimately terminal. As HD advances, patients are frequently placed in institutional care settings, including nursing homes and hospices where family, nursing staff, and interdisciplinary team members are challenged to help patients live to their highest potential and die with dignity. Edgemoor, a distinct part of the San Diego County Psychiatric Hospital, is a regional referral facility for patients with HD. Over the past 8 years, we have cared for 53 patients with advanced HD and describe our experiences by presenting their demographic characteristics and the lessons we have learned in caring for them. Ultimately, we found that the Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care Initiative provided a meaningful framework for setting clinical priorities. This framework is used to summarize the clinical lessons that nursing staff and interdisciplinary team members learned about caring well for institutionalized individuals with advanced HD.
Questions or comments about this article may be directed to Mary E. Dellefield, PhD, at firstname.lastname@example.org. She is a researcher at VA San Diego Healthcare System, San Diego, CA.
Rebecca Ferrini, MD MPH CMD, is director, Edgemoor DF SNF, Edgemoor Hospital, Santee, CA.