Institute for History, Ethics and Philosophy of Medicine, Hannover Medical School, Hannover, Germany.
Institute for Experimental Medicine, Medical Ethics Working Group, Kiel University, Kiel, Germany.
BMJ Support Palliat Care. 2021 Sep;11(3):271-287. doi: 10.1136/bmjspcare-2020-002640. Epub 2021 Jan 4.
Amyotrophic lateral sclerosis (ALS) develops into a life-threatening condition 2 to 4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, thoughts about hastening death are not uncommon.
Our aim was to examine the scope of literature on the wish to die in ALS and provide an insight into determinants and motives for different end-of-life options.
We searched eight databases for English and German publications on death wishes in ALS for the period from 2008 to 2018 and updated the search up to May 2020. After the screening process, 213 full texts were included for the final analysis. We analysed the texts in MAXQDA, using deductively and inductively generated codes.
We identified end-of-life considerations, ranging from wishes to die without hastening death, to options with the possibility or intention of hastening death. Besides physical impairment, especially psychosocial factors, socio-demographic status and socio-cultural context have a great impact on decisions for life-shortening options. There is huge variation in the motives and determinants for end-of-life considerations between individuals, different societies, healthcare and legal systems.
For a variety of reasons, the information and counselling provided on different options for sustaining life or hastening death is often incomplete and insufficient. Since the motives and determinants for the wish to hasten death are extremely diverse, healthcare professionals should investigate the reasons, meaning and strength of the desire to die to detect unmet needs and examine which interventions are appropriate in each individual case.
肌萎缩侧索硬化症（ALS）在症状出现后 2 至 4 年内发展为危及生命的状况。尽管许多患有这种疾病的人选择维持生命的措施，但加速死亡的想法并不少见。
我们旨在检查有关 ALS 中死亡意愿的文献范围，并深入了解不同生命末期选择的决定因素和动机。
我们在 2008 年至 2018 年期间，在八个数据库中搜索有关 ALS 中死亡意愿的英文和德文出版物，并更新了截至 2020 年 5 月的搜索结果。在筛选过程之后，我们纳入了 213 篇全文进行最终分析。我们使用 MAXQDA 对文本进行分析，使用演绎和归纳生成的代码。
我们确定了生命末期的考虑因素，范围从没有加速死亡意愿的死亡意愿，到有加速死亡可能性或意图的选择。除了身体损伤外，特别是心理社会因素、社会人口统计学地位和社会文化背景对缩短生命的选择决策有很大影响。个体之间、不同社会、医疗保健和法律体系之间在生命末期考虑因素的动机和决定因素方面存在巨大差异。
由于各种原因，关于维持生命或加速死亡的不同选择的信息和咨询往往不完整和不足。由于加速死亡的意愿的动机和决定因素极其多样化，医疗保健专业人员应调查死亡意愿的原因、意义和强度，以发现未满足的需求，并检查在每个具体案例中哪些干预措施是合适的。
