Clinical Ethics, University Hospital Basel and Psychiatric University Hospitals Basel, and Institut für Bio- und Medizinethik , Basel , Switzerland.
Amyotroph Lateral Scler Frontotemporal Degener. 2014 Mar;15(1-2):68-76. doi: 10.3109/21678421.2013.837928. Epub 2013 Sep 26.
Amyotrophic lateral sclerosis (ALS) may be associated with the wish to hasten death (WTHD). We aimed to determine the prevalence and stability of WTHD and end-of-life attitudes in ALS patients, identify predictive factors, and explore communication about WTHD. We conducted a prospective questionnaire study among patients and their primary caregivers attending ALS clinics in Germany and Switzerland. We enrolled 66 patients and 62 caregivers. Half of the patients could imagine asking for assisted suicide or euthanasia; 14% expressed a current WTHD at the baseline survey. While 75% were in favour of non-invasive ventilation, only 55% and 27% were in favour of percutaneous endoscopic gastrostomy and invasive ventilation, respectively. These attitudes were stable over 13 months. The WTHD was predicted by depression, anxiety, loneliness, perceiving to be a burden to others, and a low quality of life (all p < 0.05). Lower religiosity predicted whether patients could imagine assisted suicide or euthanasia. Two-thirds of patients had communicated their WTHD to relatives; no-one talked to the physician about it, yet half of them would like to do so. In conclusion, physicians should consider proactively asking for WTHD, and be sensitive towards neglected psychosocial problems and psychiatric comorbidity.
肌萎缩侧索硬化症（ALS）可能与加速死亡的愿望（WTHD）有关。我们旨在确定 ALS 患者中 WTHD 和临终态度的流行率和稳定性，确定预测因素，并探讨关于 WTHD 的沟通。我们在德国和瑞士的 ALS 诊所对患者及其主要照顾者进行了前瞻性问卷调查研究。我们招募了 66 名患者和 62 名照顾者。一半的患者可以想象要求协助自杀或安乐死；14%的患者在基线调查中表示目前有 WTHD。虽然 75%的人赞成非侵入性通气，但只有 55%和 27%的人赞成经皮内镜胃造口术和侵入性通气，分别。这些态度在 13 个月内保持稳定。WTHD 由抑郁、焦虑、孤独、认为自己是他人的负担以及生活质量低预测（均<0.05）。较低的宗教信仰预测了患者是否可以想象协助自杀或安乐死。三分之二的患者已经将他们的 WTHD 告知了亲属；没有人就此与医生交谈，但其中一半人希望这样做。总之，医生应该主动考虑询问 WTHD，并对被忽视的心理社会问题和精神共病保持敏感。
