RESUMO
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. METHODS: 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. RESULTS: 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. DISCUSSION: 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.
