Shifting the pendulum – but with checks and balances

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.