The UN Committee's interpretation of “will and preferences” can violate human rights
Authors: Tilman Steinert
Journal: World Psychiatry (2019)

In the controversies with the United Nations (UN) Committee for the implementation of the Convention on the Rights of Persons with Disability (CRPD), G. Szmukler1 highlights an important point in focusing on what the manifold cited notion of a person's "will and preferences" actually means. He sets forth that the "will" should be considered as "some kind of higher-order motivating structure that determines which desires are to be translated into acts" , reflecting the person's "deeply held beliefs" , while "preferences" should be considered as more superficial, momentary wishes which can undergo rapid change, e.g. by mental illness. Correspondingly, the "will" as stated in an advance directive should be overriding later expressed "preferences" , because otherwise advance directives would not make sense. I am not really convinced that this interpretation adds "a further dimension in the conceptualization of decision-making capacity and best interests" , as he states. I doubt that "will" and "preferences" can be differentiated without using either psychiatric or normative concepts, both of which would be rejected from the Committee's radical perspective as dis-criminatory. I have tried to reconcile psychiatric ethics with the UN CRPD2. However, I think that to find a common ground with the Committee's radical interpretation is not possible, since the clinical and legal consequences are irreconcilable. Let us consider two clinical examples. The first is the case of a patient with delusional depression and a strong suicidal intention; the second the case of a patient with severe anorexia nervosa and a life-threatening body mass index. The first patient wants to commit suicide because he is deeply convinced to be the devil himself and to be able to save the world only by his death. The other patient has demonstrated over years that her highest value seems to be eating as little as possible, even at the price of her death. How can we affirm that these wishes are only "preferences" and not the patients' "real" will? Either by pointing out that we know a significant number of people with similar conditions who had changed their intentions completely after psychiatric treatment, maybe with some initial coercion, and continued to live for decades even without treatment and without any intention to die. This is the "mental illness" concept. If one denies this concept and wants to deter these people from dying nonetheless, he has to suppose that their "real" will is to live, sharing the wishes of most people – living in good mental and physical health, under good conditions and with good relations to the people next to them. In other words, it means to enjoy their human rights. However, this is normative and very closely related to the "best interest" concept. According to the Committee's position, both the above concepts are misleading. The Committee invokes a new legislation which for these two patients would result in the consequence of death. This would certainly violate some of their most important human rights: the right to life (UN CRPD, para. 10), and the right of health (UN CRPD, para. 25). Similar to ethical principles, human rights are individually not absolute, but their degree of fulfillment is subject to their compatibility with other human rights. A typical example is circumcision of new-born boys, inducing a conflict between (the parents') freedom of religion and (the baby's) right to physical integrity. Similar deliberations are necessary in our cases. For example, in cases of patients with psychotic disorders who can live in the community with medication but end up in a seclusion room or a forensic hospital without medication, it seems short-sighted to focus only on para. 12 of the UN CRPD (equal recognition before the law), without taking into account para. 19 (living independently and being included in the community), which is likewise important for such extremely vulnerable people. In my country (Germany), we do not have common law but a constitution, with the Federal Constitutional Court (FCC) as the highest and widely respected institution. This has the advantage that a renowned legal authority is available that is competent to clarify controversial legal issues as last instance. In 2011, the FCC published two seminal decisions on the issue of involuntary treatment3. According to the FCC, treatment with use of coercion is only admissible under very restrictive conditions. However, the FCC pointed out that, in case of lack of capacity, involuntary treatment can be even required to protect the patient's right to freedom. In this context, the FCC made clear distinctions between the "free will" (corresponding to "will" in Szmukler's paper) and the "natural will" (corresponding to "preference" in Szmukler's paper). Moreover, the FCC dealt in detail with the question whether the concept of involuntary treatment is in accordance with the UN CRPD, and confirmed that it is. In addition, the FCC made in 2017 a decision in the case of a woman with breast cancer and a psychotic disorder who had refused the necessary operation because she denied being ill. Since involuntary treatment was only legal in combination with involuntary detention in a psychiatric hospital, her decision to stay voluntarily entailed that she could not be treated, and she consequently died. Retrospectively, the FCC decided that the state had a "duty to protect" in such cases and required the law to be changed, allowing treatment against a patient's will also in general hospitals. This is a careful deliberation of conflicting human rights and is completely in line with medical ethics2. Human rights belong to the most universal and precious ideas of mankind. If the UN CRPD Committee says they are unique advocates of the human rights perspective and all of us psychiatric professionals together with our domestic laws should, at least morally, stand in the dock because of torture, this is not only an "incomplete" view, as Szmukler says, but it is shocking and inacceptable. We should dare to express that. Exaggerations may be sometimes necessary to achieve political goals, but exaggerations in morality and medicine can have deadly consequences. Nonetheless, the UN CRPD itself, as Szmukler emphasized, is highly welcome, and deserves high efforts to be realized in a reasonable manner.