University of California, San Francisco, School of Medicine, San Francisco, California, USA.
Internal Medicine Department, Kaiser San Francisco, San Francisco, California, USA.
Muscle Nerve. 2021 Oct;64(4):428-434. doi: 10.1002/mus.27343. Epub 2021 Jun 12.
INTRODUCTION/AIMS: Since 2016, six states have legalized physician-hastened death (PHD). Neuromuscular disorders, including amyotrophic lateral sclerosis (ALS), are common diagnoses for patients who use PHD, but how patients with ALS view PHD in California has not been systematically studied. We aimed to quantify how many patients with ALS and their caregivers have considered PHD and to assess reasons to consider using or not using it.
This is a cross-sectional study at one ALS center surveying patients with ALS and their caregivers. Data on disease characteristics, demographics, quality of life, and depression were also collected. Descriptive statistics were used to analyze the data. Qualitative data were also collected and analyzed. Patients were followed up longitudinally to assess if they died or if they used PHD.
A small majority of ALS patients surveyed had considered or would consider using PHD (16/30). Patients most commonly described having intolerable symptoms, being a burden on their loved ones, and losing independence as reasons to consider using PHD. Many patients shared that "their life has purpose" and "they are making the most of their lives" as to why they are not considering PHD. Considering PHD was not related to disease severity or depression. On longitudinal follow-up, 10 of the 30 patients have died, and none have used PHD.
Pursuing PHD is a personal decision for each individual patient. This study shows that considering PHD is relatively common in ALS patients, independent of disease severity or presence of depression.
介绍/目的：自 2016 年以来，已有六个州将医生协助死亡合法化。肌萎缩侧索硬化症（ALS）等神经肌肉疾病是使用医生协助死亡的患者的常见诊断，但加利福尼亚州的 ALS 患者如何看待医生协助死亡尚未得到系统研究。我们旨在量化有多少 ALS 患者及其护理人员考虑过医生协助死亡，并评估考虑使用或不使用它的原因。
这是在一家 ALS 中心进行的一项横断面研究，调查了 ALS 患者及其护理人员。还收集了有关疾病特征、人口统计学、生活质量和抑郁的数据。使用描述性统计分析数据。还收集并分析了定性数据。对患者进行了纵向随访，以评估他们是否死亡或是否使用了医生协助死亡。
接受调查的 ALS 患者中，有一小部分人（16/30）考虑过或会考虑使用医生协助死亡。患者最常描述的考虑使用医生协助死亡的原因是出现无法忍受的症状、成为亲人的负担以及丧失独立性。许多患者表示，“他们的生活有意义”和“他们正在充分利用自己的生活”，这就是他们不考虑医生协助死亡的原因。考虑医生协助死亡与疾病严重程度或抑郁无关。在纵向随访中，30 名患者中有 10 人死亡，无人使用过医生协助死亡。
追求医生协助死亡是每个患者的个人决定。这项研究表明，考虑医生协助死亡在 ALS 患者中相对常见，与疾病严重程度或抑郁的存在无关。
