EvenBeam Neuropalliative Care, Leesburg, VA, United States.
Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Handb Clin Neurol. 2022;190:195-215. doi: 10.1016/B978-0-323-85029-2.00006-3.
Systems for end of life care around the world vary in availability, structure, and funding. When available, most end of life care is in the hospice model with an interdisciplinary team approach to care of people who are expected to die within months and whose primary goal is to maximize quality of life. Symptom management near the end of life is guided by prognosis and individual priorities. People dying with neurologic disease are likely to have impaired communication or mobility that adds to the complexity of prognostication and symptom management. Neurologic specialists have important roles to play in end of life care due to their unique understanding of disease prognosis as well as end of life symptom burden and management. Neurologic specialists need to become strong advocates for the importance of end of life care by being actively involved in the hospice movement and by addressing current disparities in access to care.
世界各地的临终关怀系统在可用性、结构和资金方面存在差异。在有临终关怀服务的地方,大多数临终关怀采用多学科团队的模式,为预计在几个月内死亡且主要目标是最大限度地提高生活质量的患者提供服务。接近生命终点时的症状管理由预后和个人优先事项决定。患有神经疾病的人可能会出现沟通或行动能力受损的情况,这增加了预后和症状管理的复杂性。神经科专家由于对疾病预后以及生命终点症状负担和管理的独特理解,在临终关怀中发挥着重要作用。神经科专家需要通过积极参与临终关怀运动并解决当前在获得护理方面的差距,成为临终关怀的重要倡导者。