Everett Elyse A, Pedowitz Elizabeth, Maiser Samuel, Cohen Joss, Besbris Jessica, Mehta Ambereen K, Chi Luqi, Jones Christopher A
John T. Milliken Department of Medicine, Washington University in St. Louis, St. Louis, Missouri, USA.
Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
J Palliat Med. 2020 Jun;23(6):842-847. doi: 10.1089/jpm.2020.0046. Epub 2020 Feb 26.
Amyotrophic lateral sclerosis (ALS) is a rapidly progressive and fatal neurodegenerative disorder with enormous palliative care (PC) needs that begin at the time of diagnosis. Although it is an uncommon disease, clinicians who work in PC or hospice are likely to encounter ALS somewhat frequently given the needs of patients with ALS with regard to psychosocial support, symptom management, advance care planning (ACP), caregiver support, and end-of-life care. As such, PC clinicians should be familiar with the basic principles of ALS symptoms, treatments, disease course, and issues around ACP. This article, written by a team of neurologists and PC physicians, seeks to provide PC clinicians with tips to improve their comfort and skills caring for patients with ALS and their families.
肌萎缩侧索硬化症（ALS）是一种快速进展且致命的神经退行性疾病，从诊断之时起就有巨大的姑息治疗（PC）需求。尽管它是一种罕见疾病，但鉴于ALS患者在心理社会支持、症状管理、预先护理计划（ACP）、照护者支持和临终关怀方面的需求，从事PC或临终关怀工作的临床医生可能会较为频繁地遇到ALS患者。因此，PC临床医生应熟悉ALS症状、治疗、疾病进程以及ACP相关问题的基本原则。本文由一组神经科医生和PC医生撰写，旨在为PC临床医生提供一些建议，以提高他们照顾ALS患者及其家属时的舒适度和技能。
