Objective:
To develop a pilot program integrating primary palliative care with interdisciplinary care for Huntington disease (HD). Goals: 1) train HD team members to facilitate goals of care conversations at all stages of HD; 2) create materials for care planning in HD focused on patient-centered goals of care and health-related quality of life; and 3) modify clinic workflow to include goals of care discussions.

Background:
Palliative care can benefit complex movement disorders [1,2,3,4,5]. In HD, end of life care planning contributes to health-related quality of life but most HD patients have not completed advance directives or other care plans [4,6,7]. Supply of palliative care specialists is limited and little palliative care training is provided in medical education [8,9]. The symptoms in HD present unique challenges in delivering palliative care and require specialized management [10,11,12,13]. Neurologists can provide primary palliative care by incorporating core palliative skills into routine practice [14,15,16].

Method: We reviewed stages of HD and identified common issues that arise with disease progression.  We examined existing palliative care communications materials and applied selected resources to each stage [17,18].  Team members will receive training in use of the materials and in recognizing functional changes that prompt anticipatory guidance. We developed patient materials to assist people with HD in communicating their values and goals throughout the illness, including advance care and end of life planning. Pre-clinic and post-clinic informational materials and in-clinic care planning will be incorporated into routine practice and dedicated sessions will be scheduled for goals of care discussion. Conversations will be documented in the EMR using a specific template. Specific outcomes to be assessed include completion of advance directives, documentation of care planning, clinician attitudes about complex communication, and patient perception of clinic experience.

Results: All materials have been completed. Training scheduled for spring of 2021 and implementation planned for July 2021. The development process and initial implementation will be presented.

Conclusion: Adoption of a primary palliative care model in HD care is a complex process requiring input from HD specialists and palliative care practitioners. Successful Implementation in an outpatient clinic requires additional training and modification of clinic operations.

References: 1. Creutzfeldt CJ, Kluger B, Kelly,AG, Lemmon M, Hwang DY, Galifianakis NB, Carver A, Katz M, Curtis, JR, Holloway RG. Neuropalliative care: Priorities to move the field forward. Neurology.91:217-226, 2018 2 .Vaughn CL, Kluger BM. Palliative Care for Movement Disorders. Curr Treat Options Neurol 20 (2):1-15 3. Hall K, Sumrall, M, Thelen G et al. Palliative care for Parkinson’s disease: suggestions from a council of patient and carepartners. Parkinson’s Disease 3, 16 (2017) 4 Carlozzi NE; Hahn EA; Frank SA; Perlmutter JS; Downing ND; McCormack MK; Barton S; Nance MA; Schilling SG; HDQLIFE Site Investigators and Coordinators A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning. Journal of Neurology. 265(1):98-107, 2018 5. Kluger BM, Miyasaki J, Katz M, et al. Comparison of integrated outpatient palliative care with standard care in patients with Parkinson disease and related disorders: a randomized clinical trial. JAMA Neurology. 77(5): 551-560, 2020. 6. Dubinsky R; the Huntington’s Disease Peer Workgroup. Lifting the veil of Huntington’s Disease: Recommendations to the field from the Huntington’s Disease Peer Workgroup. Princeton, NJ: Robert Wood Johnson Foundation; 2004 7. Downing NR, Goodnight S, Chae S, Perlmutter JS, McCormack M, Hahn E, Barton SK, Carlozzi N. Factors associated with end-of-life planning in Huntington disease. Am J Hosp Pall Med. 35(3):440-447, 2018 8. Lester PE, Daroowalla F, Harisingani R et al. Evaluation of housestaff knowledge and perception of competence in palliative symptom management. J Pall Med, 14(2): 139-145, 2011 9. Shaheen AW, Denton GD, Stratton TD, Hoellein AR, Chretien KC. End-of-life and palliative care curricula in internal medicine clerkships: a report on the presence, value, and design of curricula as rated by clerkship directors. Acad Med, 89(8):1168-73, 2014 10. Dellefield ME, Ferrini R. Promoting Excellence in End-of-Life Care: lessons learned from a cohort of nursing home residents with advanced Huntington disease. J Neurosci Nursing. 43(4):186-92, 2011 11 Johnson MO, Frank S, Mendlik M, Casarett D. Utilization of hospice services in a population of patients with Huntington’s Disease. J Pain Symptom Management, 55(2): 440, 2018 12. Klager J, Duckett A, Sandler S, Moskowitz C. Huntington’s disease: a caring approach to the end of life. Care Management Journal, 9(2):75-81, 2008 13. Moskowitz CB, Rao AK. Making a measurable difference in advanced Huntington disease care. Handbook of Clinical Neurology, 144:183-196, 2017 14. Robinson MT, Holloway RG. Palliative Care in Neurology. Mayo Clin Proc. 92(10):1592-1601, 2017 15. Quill TE, Abernathy AP. Generalist plus specialist palliative care—creating a more sustainable model. NEJM 368(13): 1173-1175, 2003 16. Tarolli CG, Chesire AM, Biglan KM. Palliative care in Huntington disease: Personal reflection and a review of the literature. Tremor Other Hyperkinet Mov. 11(7): 454, 2017 17. Back AL, Fromme EK, Meier DE. Training Clinicians with Communication Skills Needed to Match Medical Treatments to Patient Values. J Am Geriatr Soc 67:S435–S441, 2019 18. Bernacki R, Paladino J, Neville B, et al. Effect of the Serious Illness Care Program in Outpatient Oncology: A Cluster Randomized Clinical Trial. JAMA Intern Med. 2019 Jun 1;179(6):751-759

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