From the Department of Neurology (C.J.C.), University of Washington, Harborview Medical Center, Seattle; Department of Neurology (B.K.), University of Colorado Anschutz Medical Center, Denver; Department of Neurology (A.G.K., R.G.H.), University of Rochester Medical Center, NY; Department of Pediatrics (M.L.), Division of Child Neurology, Duke University Hospital, Durham, NC; Division of Neurocritical Care and Emergency Neurology (D.Y.H.) and Center for Neuroepidemiology and Clinical Neurological Research (D.Y.H.), Yale School of Medicine, New Haven, CT; Department of Neurology (N.B.G., M.K.), University of California in San Francisco; Department of Neurology (A.C.), Memorial Sloan Kettering Cancer Center, New York, NY; and Cambia Palliative Care Center of Excellence (J.R.C.), University of Washington, Seattle.
Neurology. 2018 Jul 31;91(5):217-226. doi: 10.1212/WNL.0000000000005916. Epub 2018 Jun 27.
Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to move the field forward. Clinical priorities included the need to develop and implement effective models to integrate palliative care into neurology and to develop and implement informative quality measures to evaluate and compare palliative approaches. Educational priorities included the need to improve the messaging of palliative care and to create standards for palliative care education for neurologists and neurology education for palliative specialists. Research priorities included the need to improve the evidence base across the entire research spectrum from early-stage interventional research to implementation science. Highest priority areas include focusing on outcomes important to patients and families, developing serious conversation triggers, and developing novel approaches to patient and family engagement, including improvements to decision quality. As we continue to make remarkable advances in the prevention, diagnosis, and treatment of neurologic illness, neurologists will face an increasing need to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body. This article outlines opportunities to improve the quality of care for all patients with neurologic illness and their families through a broad range of clinical, educational, and investigative efforts that include complex symptom management, communication skills, and models of care.
神经姑息治疗是神经病学和姑息治疗领域的一个新兴亚专业。2017 年 4 月 26 日，我们召集了一次神经姑息治疗峰会，邀请了该领域的国内外专家，制定了临床、教育和研究议程，以推动该领域的发展。临床重点包括需要开发和实施有效的模式，将姑息治疗纳入神经病学，并开发和实施有意义的质量措施，以评估和比较姑息方法。教育重点包括需要改进姑息治疗的信息传递，并为神经病学家制定姑息治疗教育标准和为姑息治疗专家制定神经病学教育标准。研究重点包括需要在整个研究领域（从早期干预研究到实施科学）提高证据基础。优先重点领域包括关注对患者和家属重要的结果，开发严肃对话的触发因素，以及开发新的患者和家属参与方法，包括改善决策质量。随着我们在预防、诊断和治疗神经疾病方面取得显著进展，神经病学家将面临越来越大的需要，通过涉及巨大不确定性和身心极其重要结果的复杂选择，为患者和家属提供指导和支持。本文概述了通过广泛的临床、教育和调查工作，包括复杂症状管理、沟通技巧和护理模式，为所有患有神经疾病的患者及其家属改善护理质量的机会。
