Clinical Ethics Support and Accompanying Research, University Hospital Basel/Psychiatric University Hospitals Basel, Institut für Bio- und Medizin Ethik, University of Basel Basel, Switzerland.
Front Psychol. 2012 Oct 25;3:443. doi: 10.3389/fpsyg.2012.00443. eCollection 2012.
In Switzerland, assisted suicide (AS) is legal, provided that the person seeking assistance has decisional capacity and the person assisting is not motivated by reasons of self-interest. However, in this particular setting nothing is known about patients' and their caregivers' attitudes toward AS and life-prolonging measures.
Data was retrieved through validated questionnaires and personal interviews in 33 patients and their caregivers covering the following domains: physical function according to the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R), demographic data, quality of life, anxiety, depression, social situation, spirituality, burden of disease, life-prolonging, and life-shortening acts.
In patients the median time after diagnosis was 9 months (2-90) and the median Amyotrophic Lateral Sclerosis (ALS) FRS-R score was 37 (22-48). The majority of patients (94%; n = 31) had no desire to hasten death. Patients' and caregivers' attitudes toward Percutaneous Endoscopic Gastrostomy (PEG) and Non-Invasive Ventilation (NIV) differed. Significantly more patients than caregivers (21.2 versus 3.1%) stated that they were against NIV (p = 0.049) and against PEG (27.3 versus 3.1%; p = 0.031). Answers regarding tracheotomy were not significantly different (p = 0.139). Caregivers scored significantly higher levels of "suffering" (p = 0.007), "loneliness" (p = 0.006), and "emotional distress" answering the questionnaires (p < 0.001). Suffering (p < 0.026) and loneliness (p < 0.016) were related to the score of the Hospital Anxiety and Depression Scale (HADS) in patients.
A liberal legal setting does not necessarily promote the wish for AS. However, the desire to discuss AS is prevalent in ALS patients. There is a higher level of suffering and loneliness on the caregivers' side. A longitudinal study is warranted.
在瑞士，辅助自杀（AS）是合法的，只要寻求帮助的人有决策能力，并且协助的人不是出于自身利益的动机。然而，在这种特殊情况下，对于患者及其护理人员对 AS 和延长生命措施的态度，人们一无所知。
通过对 33 名患者及其护理人员进行的经过验证的问卷和个人访谈收集数据，涵盖以下领域：根据修订后的肌萎缩侧索硬化症功能评定量表（ALSFRS-R）评估的身体功能、人口统计学数据、生活质量、焦虑、抑郁、社会状况、精神信仰、疾病负担、延长生命和缩短生命的行为。
在患者中，确诊后中位数时间为 9 个月（2-90 个月），中位数肌萎缩侧索硬化症（ALS）FRS-R 评分为 37 分（22-48 分）。大多数患者（94%；n=31）没有加速死亡的愿望。患者和护理人员对经皮内镜胃造口术（PEG）和无创通气（NIV）的态度不同。表示反对 NIV（p=0.049）和反对 PEG（p=0.031）的患者明显多于护理人员（21.2%比 3.1%）。关于气管切开术的回答没有显著差异（p=0.139）。护理人员在回答问卷时，“痛苦”（p=0.007）、“孤独”（p=0.006）和“情绪困扰”的评分明显更高（p<0.001）。患者的痛苦（p<0.026）和孤独（p<0.016）与医院焦虑和抑郁量表（HADS）的评分相关。
宽松的法律环境并不一定促进 AS 的愿望。然而，ALS 患者普遍希望讨论 AS。护理人员的痛苦和孤独感更高。需要进行纵向研究。
