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智力残疾和/或自闭症谱系障碍患者的安乐死与医生协助自杀:对39例荷兰病例报告的调查(2012 - 2021年)

Euthanasia and physician-assisted suicide in people with intellectual disabilities and/or autism spectrum disorders: investigation of 39 Dutch case reports (2012-2021).

作者信息

Tuffrey-Wijne Irene, Curfs Leopold, Hollins Sheila, Finlay Ilora

机构信息

Faculty of Health, Science, Social Care and Education, Kingston University London, Kingston upon Thames, UK.

Governor Kremers Centre, Maastricht University Medical Centre, Maastricht, The Netherlands.

出版信息

BJPsych Open. 2023 May 23;9(3):e87. doi: 10.1192/bjo.2023.69.

Abstract

BACKGROUND

Euthanasia review committees (Regionale Toetsingscommissies Euthanasie, RTE) scrutinise all Dutch cases of euthanasia and physician-assisted suicide (EAS) to review whether six legal 'due care' criteria are met, including 'unbearable suffering without prospect of improvement'. There are significant complexities and ethical dilemmas if EAS requests are made by people with intellectual disabilities or autism spectrum disorders (ASD).

AIMS

To describe the characteristics and circumstances of people with intellectual disabilities and/or ASD who were granted their EAS request; investigate the main causes of suffering that led to the EAS request; and examine physicians' response to the request.

METHOD

The online RTE database of 927 EAS case reports (2012-2021) was searched for patients with intellectual disabilities and/or ASD ( = 39). Inductive thematic content analysis was performed on these case reports, using the framework method.

RESULTS

Factors directly associated with intellectual disability and/or ASD were the sole cause of suffering described in 21% of cases and a major contributing factor in a further 42% of cases. Reasons for the EAS request included social isolation and loneliness (77%), lack of resilience or coping strategies (56%), lack of flexibility (rigid thinking or difficulty adapting to change) (44%) and oversensitivity to stimuli (26%). In one-third of cases, physicians noted there was 'no prospect of improvement' as ASD and intellectual disability are not treatable.

CONCLUSIONS

Examination of societal support for suffering associated with lifelong disability, and debates around the acceptability of these factors as reasons for granting EAS, are of international importance.

摘要

背景

安乐死审查委员会(荷兰地区安乐死审查委员会,RTE)会仔细审查荷兰所有的安乐死和医生协助自杀(EAS)案例,以评估是否符合六项合法的“适当照护”标准,包括“遭受无法忍受的痛苦且没有改善的希望”。如果智障人士或自闭症谱系障碍(ASD)患者提出EAS请求,会存在重大的复杂性和伦理困境。

目的

描述获得EAS请求批准的智障人士和/或ASD患者的特征和情况;调查导致EAS请求的主要痛苦原因;并检查医生对该请求的回应。

方法

在RTE的927例EAS病例报告在线数据库(2012 - 2021年)中搜索智障和/或ASD患者(n = 39)。使用框架法对这些病例报告进行归纳主题内容分析。

结果

与智障和/或ASD直接相关的因素是21%的案例中所描述的痛苦的唯一原因,在另外42%的案例中是主要促成因素。EAS请求的原因包括社会隔离和孤独(77%)、缺乏适应力或应对策略(56%)、缺乏灵活性(思维僵化或难以适应变化)(44%)以及对刺激过度敏感(26%)。在三分之一的案例中,医生指出“没有改善的希望”,因为ASD和智障无法治愈。

结论

审视社会对与终身残疾相关痛苦的支持,以及围绕将这些因素作为批准EAS理由的可接受性的辩论,具有国际重要性。

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