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Shifting the pendulum – but with checks and balances
World Psychiatry ( IF 60.5 ) Pub Date : 2024-09-16 , DOI: 10.1002/wps.21232
Tilman Steinert 1
Affiliation  

The most important advances in mental health care in this millennium have not come, as many had expected, from neurobiological research, funded with billions of dollars worldwide. Nor has digitalization been as powerful and scalable a tool as initially thought, due to a number of technical and ethical issues, as outlined by Galderisi et al1. The most important, and hopefully sustainable, progress worldwide has not come from techniques, but from an idea – the idea of universal and inalienable human rights.

These fundamental rights are outlined by the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD), but they are the same rights that apply to everyone. The recognition of what in many ways seems self-evident today has taken a shamefully long time. The use of coercion in the treatment of mentally ill people, the need for shared decision-making, the importance of informed consent in research and treatment; the rights to informed self-determination, to see one's own clinical records and, last but not least, to decide about one's own life and its end – these are all issues that were hardly discussed at psychiatric meetings and in psychiatric journals thirty years ago.

This was not a problem specific to psychiatry. In medicine as a whole, it was only a few decades ago that patients began to be seen not just as objects of treatment and research, but also as subjects whose experiences needed to be studied. Even issues such as patient satisfaction and quality of life were considered to be of little professional or scientific interest until then in the paternalistic structures of health care and research. It was only in 2018 that the World Medical Association added the phrase “I will respect the autonomy and dignity of my patient” to the Declaration of Geneva, the modern Hippocratic Oath2. But now this phrase appears as the third of the thirteen statements in the Declaration, which shows that the pendulum has swung – “towards respecting the autonomy and dignity of people with lived experience of mental health conditions”1.

However, there is not only reason for relief. Psychiatry is only one of a number of stakeholders in the field, and psychiatrists as a profession have been blamed using harsh words, including torture3. There is a deep divide between those who claim human rights as a unique selling point and propose a simple solution to a complex problem – the complete abolition of coercion in psychiatry, along with the relevant laws – and the other side, represented by psychiatrists, medical ethics, legislations in almost all countries, and courts such as the German Constitutional Court. As with many other issues in our societies, shaming and blaming have become more prevalent than open discussion and the exchange of arguments between positions.

In this regard, human rights would be a perfect starting point for the debate. There are a number of clearly defined human rights to be respected, listed in the CRPD, including the right to life (Article 10), equal recognition before the law (Article 12), freedom from torture or cruel, inhuman or degrading treatment or punishment (Article 15), freedom from exploitation, violence and abuse (Article 16), independent living and inclusion/participation in the community (Article 19), respect for home and family (Article 23), health (Article 25), habilitation and rehabilitation (Article 26), and adequate standard of living and social protection (Article 28). Among these fundamental rights, there is no hierarchy. No single right is superior to another. Around the world, we have learned many lessons in this regard during the COVID-19 pandemic.

A characteristic of these rights is that they are not absolute but mutually limiting. This even applies to the right to life. The right that one's will and preferences are taken into account – the famous Article 12 of the CRPD – can be limited by the same rights of other people, and must be balanced against other rights such as the right to health and the right to be included in a community. Similarly, in principle-based medical ethics, patient's autonomy can be limited by the principles of beneficence and non-maleficence, and vice versa. However, this only applies when severe mental conditions hamper the patient's capacity to build an autonomous and free will. Consequently, decisions on the use of coercion must be based not only on existing law but also on a comprehensive individual consideration, taking into account not only the medical conditions but also all aspects of the patient's individual personality and history and his/her family and social environment.

Coercion is itself an aspect of maleficence and violates several human rights. Nevertheless, weighing it against other rights may in some cases lead to the conclusion that refraining from coercion would have even more harmful consequences4. Therefore, the shifting of the pendulum towards greater patient autonomy needs to be accompanied by a close look at where the pendulum is fixed and whether this is in line with a comprehensive view of human rights for all parties involved.

In this respect, a matter of concern is that, in several countries, the provision of mental health services is characterized by a steady decline in the number of beds in general psychiatric facilities and a substantial and continuing increase in the number of beds in forensic psychiatric and prison facilities. This applies to Europe5, but also to Latin American countries6. It means that an increasing proportion of people with severe mental illness have lost their freedom and their right to inclusion in the community for a long time, are subjected to a considerable amount of coercion, and have significantly violated the rights of others. This negative outcome at the societal level must be part of the discussion.

Similarly, we have come a long way from the medieval religious belief that suicide was a sin and that sinners were denied the right to be buried in cemeteries. The Enlightenment has finally achieved its goal. People have the right to decide on themselves. However, again some checks and balances are needed. Some countries – such as Belgium, the Netherlands and Colombia – have introduced fairly liberal legislations on assisted suicide and euthanasia. On the other hand, considerable thresholds have been established there, including the requirement for expert opinions and specialized centres. Nevertheless, the number of cases is increasing, both in general and as regards those involving mental disorders7, 8.

One threshold for admissibility in those countries is “intolerable suffering”, which means that other people (physicians) have to judge what level of suffering is tolerable for an individual. This is contrary to the idea of autonomy. In 2020, the German Constitutional Court opened up a different pathway. It ruled that everyone has the right to receive assistance in dying, regardless of his/her individual motives. However, the person should be acting in “free responsibility”, explicitly free from acute mental disorder and from social or psychological pressure. In 2023, two draft legislations for further regulations did not pass the parliament.

The German Association for Psychiatry, Psychotherapy and Psychosomatics has expressed concern that a “grey”, unregulated practice will spread, with a lack of protection for people with mental illness and little transparency. A suicide prevention law is deemed urgently necessary as a counterbalance. Furthermore, as with the use of coercion, we need transparent data on health outcomes and practices. On the basis of such data, we need to have an unbiased discussion on how best to adjust the pendulum swinging between autonomy and care.



中文翻译:


改变钟摆——但要有制衡



正如许多人所期望的那样,本世纪精神卫生保健领域最重要的进展并非来自全球投入数十亿美元资金的神经生物学研究。正如 Galderisi 等人1所概述的,由于许多技术和道德问题,数字化也不像最初想象的那样强大和可扩展。世界范围内最重要且有望可持续的进步并非来自技术,而是来自一种理念——普遍且不可剥夺的人权理念。


联合国 (UN) 残疾人权利公约 (CRPD) 概述了这些基本权利,但它们是适用于每个人的相同权利。对今天在许多方面看来不言而喻的事物的认识花了可耻的很长一段时间。在治疗精神病患者时使用强制手段、共同决策的必要性、知情同意在研究和治疗中的重要性;知情自决权、查看自己的临床记录的权利,以及最后但并非最不重要的,决定自己生命及其结局的权利——这些都是三十年前在精神病学会议和精神病学期刊上几乎没有讨论过的问题。


这不是精神病学特有的问题。就整个医学而言,直到几十年前,患者才开始不仅被视为治疗和研究的对象,而且还被视为需要研究其经历的主体。直到那时,在医疗保健和研究的家长式结构中,甚至患者满​​意度和生活质量等问题也被认为没有什么专业或科学意义。直到2018年,世界医学协会才在《日内瓦宣言》(现代希波克拉底誓言)中添加了“我将尊重患者的自主权和尊严”这句话2 。但现在这句话出现在《宣言》十三项声明中的第三项,这表明钟摆已经摆动——“转向尊重有精神健康状况经历的人的自主权和尊严” 1


然而,缓解的理由不仅有。精神病学只是该领域众多利益相关者之一,精神病学家作为一个职业一直受到严厉的指责,包括酷刑3 。那些声称人权是独特卖点并提出解决复杂问题的简单解决方案——彻底废除精神病学强制行为以及相关法律的人与以精神病学家、医学界代表为代表的另一方之间存在着深刻的分歧。几乎所有国家的道德规范、立法以及德国宪法法院等法院。与我们社会中的许多其他问题一样,羞辱和指责已经变得比公开讨论和立场之间的争论更为普遍。


在这方面,人权将是辩论的完美起点。 《残疾人权利公约》中列出了许多明确规定的需要尊重的人权,包括生命权(第 10 条)、法律面前人人平等(第 12 条)、免遭酷刑或残忍、不人道或有辱人格的待遇或处罚。 (第 15 条)、免遭剥削、暴力和虐待(第 16 条)、独立生活和融入/参与社区(第 19 条)、尊重家庭和家庭(第 23 条)、健康(第 25 条)、适应训练和康复(第 26 条),以及充足的生活水平和社会保护(第 28 条)。这些基本权利之间没有等级之分。没有哪一项权利优于另一项权利。在世界各地,我们在 COVID-19 大流行期间在这方面吸取了许多教训。


这些权利的一个特点是它们不是绝对的而是相互限制的。这甚至适用于生命权。考虑个人意愿和偏好的权利——著名的《残疾人权利公约》第12条——可以受到其他人相同权利的限制,并且必须与健康权和被包容权等其他权利相平衡在一个社区中。同样,在基于原则的医学伦理中,患者的自主权可以受到仁慈和非恶意原则的限制,反之亦然。然而,这只适用于严重的精神状况阻碍患者建立自主和自由意志的能力的情况。因此,关于使用强制手段的决定不仅必须基于现行法律,而且必须基于个人的综合考虑,不仅考虑到患者的医疗状况,而且考虑到患者的个人性格和历史以及他/她的家庭和社会的各个方面。环境。


胁迫本身就是恶意行为的一个方面,并且侵犯了多项人权。然而,在某些情况下,将其与其他权利进行权衡可能会得出这样的结论:不使用强制会产生更有害的后果4 。因此,在将钟摆转向更大的患者自主权的同时,还需要仔细审视钟摆的固定位置,以及这是否符合所有相关方的全面人权观。


在这方面,令人关切的问题是,在一些国家,提供精神卫生服务的特点是普通精神病院床位数量稳步下降,而法医精神病院床位数量持续大幅增加。和监狱设施。这适用于欧洲5 ,也适用于拉丁美洲国家6 。这意味着越来越多的严重精神疾病患者长期失去自由和融入社会的权利,受到相当程度的胁迫,严重侵犯他人权利。这种社会层面的负面结果必须成为讨论的一部分。


同样,我们已经远离了中世纪的宗教信仰,即自杀是一种罪过,罪人被剥夺了被埋葬在墓地的权利。启蒙运动终于达到了它的目的。人们有权利自己决定。然而,同样需要一些制衡。一些国家——例如比利时、荷兰和哥伦比亚——出台了关于协助自杀和安乐死的相当自由的立法。另一方面,那里设立了相当大的门槛,包括对专家意见和专门中心的要求。然而,无论是一般案件还是涉及精神障碍的案件数量都在增加7, 8


这些国家的受理门槛之一是“无法忍受的痛苦”,这意味着其他人(医生)必须判断一个人可以忍受什么程度的痛苦。这与自治的理念相悖。 2020年,德国宪法法院开辟了一条不同的途径。它规定,每个人都有权获得死亡援助,无论他/她的个人动机如何。然而,该人应该以“自由责任”的方式行事,明确没有急性精神障碍和社会或心理压力。 2023年,两项进一步监管的立法草案未在议会获得通过。


德国精神病学、心理治疗和心身学协会表示担心,“灰色”、不受监管的做法将会蔓延,对精神疾病患者缺乏保护,透明度也很低。作为一种平衡措施,制定自杀预防法被认为是迫切需要的。此外,与使用强迫一样,我们需要有关健康结果和做法的透明数据。在这些数据的基础上,我们需要就如何最好地调整自主和护理之间的钟摆进行公正的讨论。

更新日期:2024-09-16
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