Kluger Benzi M, Persenaire Michael J, Holden Samantha K, Palmer Laura T, Redwine Hannah, Berk Julie, Anderson C Alan, Filley Christopher M, Kutner Jean, Miyasaki Janis, Carter Julie
Department of Neurology, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Department of Neurology, University of Washington, Seattle, Washington, USA.
Ann Palliat Med. 2018 Jul;7(3):339-348. doi: 10.21037/apm.2017.10.06. Epub 2017 Nov 29.
There is growing interest in the application of palliative care principles to improve care for patients and families affected by neurologic diseases. We developed an interdisciplinary outpatient clinic for patients and families affected by neurologic disorders to better address the problems faced by our highest need patients. We have developed and improved this program over the past three years and share several of our most important lessons as well as ongoing challenges and areas where we see our clinic evolving in the future.
We provide a description of our clinic logistics, including key steps in the initiation of the clinic, and provide descriptions from similar clinics at other institutions to demonstrate some of the variability in this growing field. We also provide results from a formal one-year quality improvement project and a one-year retrospective study of patients attending this clinic.
Our clinic has grown steadily since its inception and maintains high satisfaction ratings from patients, caregivers, and referring providers. To maintain standardized and efficient care we have developed materials for patients and referring physicians as well as checklists and other processes used by our interdisciplinary team. Feedback from our quality improvement project helped define optimal visit duration and refine communication among team members and with patients and families. Results from our chart review suggest our clinic influences advance care planning and place of death. Common referral reasons include psychosocial support, complex symptom management, and advance care planning. Current challenges for our clinic include developing a strategy for continued growth, creating a sustainable financial model for interdisciplinary care, integrating our services with disease-specific sections, improving primary palliative care knowledge and skills within our referral base, and building effective alliances with community neurologists, geriatrics, primary care, nursing homes, and hospices.
Specialized outpatient palliative care for neurologic disorders fills several important gaps in care for this patient population, provides important educational opportunities for trainees, and creates opportunities for patient and caregiver-centered research. Educational initiatives are needed to train general neurologists in primary palliative care, to train neurologists in specialist palliative care, and to train palliative medicine specialists in neurology. Research is needed to build an evidence base to identify patient and caregiver needs, support specific interventions, and to build more efficient models of care in both academic and community settings.
将姑息治疗原则应用于改善对受神经系统疾病影响的患者及其家庭的护理，这一兴趣日益浓厚。我们为受神经系统疾病影响的患者及其家庭开设了一个跨学科门诊，以更好地解决我们最有需求的患者所面临的问题。在过去三年里，我们开发并改进了这个项目，并分享了一些我们最重要的经验教训以及持续存在的挑战，以及我们认为门诊未来会发展的领域。
我们描述了门诊的后勤工作，包括开设门诊的关键步骤，并提供了其他机构类似门诊的描述，以展示这个不断发展的领域中的一些差异。我们还提供了一个为期一年的正式质量改进项目的结果，以及对参加该门诊的患者进行的为期一年的回顾性研究的结果。
我们的门诊自成立以来稳步发展，患者、护理人员和转诊医生的满意度一直很高。为了维持标准化和高效的护理，我们为患者和转诊医生开发了资料，以及跨学科团队使用的检查表和其他流程。我们质量改进项目的反馈有助于确定最佳就诊时长，并改善团队成员之间以及与患者和家庭的沟通。我们病历审查的结果表明，我们的门诊影响了临终关怀计划和死亡地点。常见的转诊原因包括心理社会支持、复杂症状管理和临终关怀计划。我们门诊目前面临的挑战包括制定持续发展的战略、创建跨学科护理的可持续财务模式、将我们的服务与特定疾病科室整合、提高我们转诊范围内的初级姑息治疗知识和技能，以及与社区神经科医生、老年病科医生、初级保健医生、养老院和临终关怀机构建立有效的联盟。
针对神经系统疾病的专科门诊姑息治疗填补了该患者群体护理中的几个重要空白，为实习生提供了重要的教育机会，并为以患者和护理人员为中心的研究创造了机会。需要开展教育举措，对普通神经科医生进行初级姑息治疗培训，对神经科医生进行专科姑息治疗培训，并对姑息医学专家进行神经学培训。需要开展研究以建立证据基础，以确定患者和护理人员的需求、支持特定干预措施，并在学术和社区环境中建立更高效的护理模式。
