Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK; South London and Maudsley NHS Foundation Trust, London, UK.
Lancet Psychiatry. 2021 Jul;8(7):599-609. doi: 10.1016/S2215-0366(21)00115-2. Epub 2021 May 21.
Self-binding directives instruct clinicians to overrule treatment refusal during future severe episodes of illness. These directives are promoted as having the potential to increase autonomy for individuals with severe episodic mental illness. Although lived experience is central to their creation, the views of service users on self-binding directives have not been investigated substantially. This study aimed to explore whether reasons for endorsement, ambivalence, or rejection given by service users with bipolar disorder can address concerns regarding self-binding directives, decision-making capacity, and human rights.
This qualitative study used data from an internet-based survey distributed to the mailing list of the UK charity Bipolar UK, which contained multiple closed and open questions on advance decision making for patients with bipolar disorder. We included participants who reported that they have been diagnosed with bipolar disorder by a professional (doctor or psychiatrist). In a previous study, quantitative analysis of a closed question about self-binding directives had shown endorsement among a high proportion of participants with bipolar disorder who completed the survey. In this study, we did a thematic analysis of responses from those participants who answered a subsequent open question about reasons for their view. Research was done within a multidisciplinary team, including team members with clinical, legal, and ethical expertise, and lived experience of bipolar disorder. Ideas and methods associated with all these areas of expertise were used in the thematic analysis to gain insight into the thoughts of individuals with bipolar disorder about self-binding directives and associated issues.
Between Oct 23, 2017, and Dec 5, 2017, 932 individuals with a self-reported clinical diagnosis of bipolar disorder completed the internet survey, with 565 individuals (154 men, 400 women, 11 transgender or other), predominantly white British, providing free-text answers to the open question. 463 (82%) of the 565 participants endorsed self-binding directives, of whom 411 (89%) describing a determinate shift to distorted thinking and decision making when unwell as their key justification. Responses indicating ambivalence (37 [7%) of the 565 responses) were dominated by logistical concerns about the drafting and implementation of self-binding directives, whereas those who rejected self-binding directives (65 [12%] of the 565 responses) cited logistical concerns, validity of their thinking when unwell, and potential contravention of human rights.
This study is, to our knowledge, the first large study assessing the reasons why mental health service users might endorse or reject the use of self-binding directives. The findings provide empirical support for introducing self-binding directives into mental health services as well as advance decision-making practice and policy, and might help address enduring ethical concerns surrounding possible implementation of the directive while a person retains decision-making capacity. The opinions expressed here in responses given by multiple service users with bipolar disorder challenge a prominent view within international disability rights debates that involuntary treatment and recognition of impaired mental capacity constitute inherent human rights violations.
The Wellcome Trust.
自我约束指令指示临床医生在未来严重疾病发作期间推翻治疗拒绝。这些指令被认为有可能增加严重发作性精神疾病患者的自主权。尽管生活经验是其创建的核心，但服务使用者对自我约束指令的看法并没有得到充分的研究。本研究旨在探讨双相情感障碍患者表示支持、矛盾或反对的原因是否可以解决自我约束指令、决策能力和人权方面的担忧。
这项定性研究使用了来自英国慈善机构 Bipolar UK 邮件列表的在线调查的数据，该调查包含了针对双相情感障碍患者预先决策的多个封闭和开放问题。我们纳入了那些报告自己被专业医生或精神病医生诊断为双相情感障碍的参与者。在之前的一项研究中，对关于自我约束指令的封闭问题的定量分析表明，完成调查的大多数双相情感障碍患者都表示支持。在本研究中，我们对那些回答了关于他们观点的后续开放问题的参与者的回答进行了主题分析。研究是在一个多学科团队中进行的，包括具有临床、法律和伦理专业知识以及双相情感障碍生活经验的团队成员。与所有这些专业领域相关的想法和方法都用于主题分析，以深入了解双相情感障碍患者对自我约束指令和相关问题的想法。
2017 年 10 月 23 日至 12 月 5 日期间，932 名自我报告临床诊断为双相情感障碍的个人完成了在线调查，其中 565 名（154 名男性，400 名女性，11 名跨性别者或其他），主要是英国白人，对开放问题提供了自由文本答案。565 名参与者中的 463 名（82%）表示支持自我约束指令，其中 411 名（89%）表示当病情不佳时，他们的思维和决策会出现扭曲，这是他们的主要理由。表示矛盾（565 名参与者中有 37 名[7%]）的反应主要集中在自我约束指令的起草和实施方面的后勤问题上，而那些拒绝自我约束指令的人（565 名参与者中有 65 名[12%]）则提到了后勤问题、病情不佳时思维的有效性以及潜在的侵犯人权问题。
据我们所知，这项研究是评估精神健康服务使用者可能支持或反对使用自我约束指令的原因的第一项大型研究。研究结果为在精神卫生服务以及预先决策实践和政策中引入自我约束指令提供了实证支持，并且可能有助于解决在一个人保留决策能力时围绕指令的可能实施而存在的持久伦理问题。这里在多名双相情感障碍患者的回答中表达的意见挑战了国际残疾人权利辩论中的一个突出观点，即非自愿治疗和承认精神能力受损构成了固有的人权侵犯。
惠康信托基金会。
