Background Self-binding directives (SBDs) are psychiatric advance directives that include the possibility for service users to consent in advance to compulsory care in future mental health crises. Legal provisions for SBDs exist in the Netherlands since 2008 and were updated in 2020. While ethicists and legal scholars have identified several benefits and risks of SBDs, few data on stakeholder perspectives on SBDs are available. Aims The aim of the study was to identify opportunities and challenges of SBDs perceived by stakeholders (...) who have personal or professional experience with legally enforceable SBDs. Methods Data collection was carried out in the Netherlands from February 2020 to October 2021 by means of semi-structured interviews. Participants were selected through purposive sampling and snowball methods. Interviews were conducted with mental health service users (n = 7), professionals (n = 13), and an expert on SBD policy (n = 1), resulting in a total number of 21 interviews. The data were analyzed thematically. Results Perceived benefits of SBDs included increased autonomy, improvement of the therapeutic relationship, possibility of early intervention and prevention of harm, prevention of compulsory care, reduction of the duration of compulsory care and recovery, mitigation of negative experiences around compulsory care, and guidance for professionals in providing compulsory care. Perceived risks included infeasibility of SBD instructions, difficulty in decision-making around SBD activation, limited accessibility of SBDs, disappointment of service users due to non-compliance with SBDs, and limited evaluation and updating of SBD content. Barriers to SBD completion included lack of knowledge of SBDs among professionals, lack of motivation or insight among service users, and lack of professional support for SBD completion. Facilitators of SBD completion and activation included support for SBD completion, involvement of relatives and peer experts, specification of SBD content, and evaluation of compulsory care and SBD content. The new legal framework was regarded as having both positive and negative effects on SBD implementation. Conclusions Stakeholders who have personal or professional experience with legally enforceable SBDs perceive SBDs as having important benefits and tend not to articulate the fundamental ethical concerns about SBDs which can be found in the ethics and legal literature. Instead, they perceive ethical and practical challenges that can be addressed through the implementation of suitable safeguards. (shrink)

A competent patient has the right to refuse treatment necessary to sustain life. However, for many end-of-life decisions, we lack direct access to the wishes of a competent patient. Some treatment decisions near the end of life involve patients with severely diminished mental capacity, some involve patients who are unable to communicate, and some involve patients who are simply unable or unwilling to participate in decisionmaking due to the nature or severity of their illness.

Decisions about brain surgery pose existential challenges because they are often decisions about life or death, and sometimes about possible personality changes. Therefore they require rigorous neuroethical consideration. However, we doubt whether metaphysical interpretations of ambiguous statements of patients are useful for deriving ethical and legal conclusions. Particularly, we question the application of psychological theories of personal identity on neuroethical issues for several reasons. First, even the putative “standard view” on personal identity is contentious. Second, diverse accounts of personal identity (...) have been introduced into the neuroethical debate, which are incompatible. Third, the criteria for “diagnosing” the supposed changes in “identity” are ambiguous and indeterminate. Fourth, the metaphysical theories of personal identity imply highly questionable ethical and legal revisions, namely the denial of advance directives, particularly of Ulysses contracts, and, for patients with brain cancer, even therapeutic nihilism.We discuss three examples in which ideas from the personal identity debate in metaphysics are straightforwardly applied to discuss ethical issues of neurosurgery. We discuss revisions of the current medico-legal practice that have been proposed on grounds of psychological theories of personal identity. We argue that the established status quo in law and clinical practice is beneficial to the patients concerned. Furthermore, it is metaphysically neutral, which is an important principle of liberal, democratic, pluralistic societies.We recommend a pragmatic approach: empirical research on personality changes arising from brain disorders or interventions, comprehensive information about risks of personality changes, and advance directives, particularly Ulysses contracts. (shrink)

The use of coercive measures in the care for the addicted has changed over the past 20 years. Laws that have adopted the “dangerousness” criterion in order to secure patients’ rights to non-intervention are increasingly subjected to critique as many authors plead for wider dangerousness criteria. One of the most salient moral issues at stake is whether addicts who are at risk of causing danger to themselves should be involuntarily admitted and/or treated. In this article, it is argued that the (...) dilemma between coercion on the one hand and abandonment on the other cannot be analysed without differentiated perspectives on the key notions that are used in these debates. The ambiguity these notions carry within care practice indicates that the conflict between the prevention of danger and respect for autonomy is not as sharp as the legal systems seem to imply. Some coercive measures need not be interpreted as an infringement of autonomy—rather, they should be interpreted as a way to provide good care. (shrink)

This paper argues that it will be important for new genomic technologies to recognize the limits of traditional approaches to informed consent, so that other-regarding implications of genomic information can be properly contextualized and individual rights respected. Respect for individual autonomy will increasingly require dynamic consideration of the interrelated dimensions of individual and broader community interests, so that the interests of one do not undermine fundamental interests of the other. In this, protection of individual rights will be a complex interplay (...) between individual and community concerns. (shrink)

Patients with borderline personality disorder sometimes request to be admitted to hospital under compulsory care, often under the argument that they cannot trust their suicidal impulses if treated voluntarily. Thus, compulsory care is practised as a form of Ulysses contract in such situations. In this normative study we scrutinize the arguments commonly used in favour of such Ulysses contracts: the patient lacking free will, Ulysses contracts as self-paternalism, the patient lacking decision competence, Ulysses contracts as a defence of the authentic (...) self, and Ulysses contracts as a practical solution in emergency situations. In our study, we have accepted consequentialist considerations as well as considerations of autonomy. We conclude that compulsory care is not justified when there is a significant uncertainty of beneficial effects or uncertainty regarding the patient’s decision-making capacity. We have argued that such uncertainty is present regarding BPD patients. Hence, Ulysses contracts including compulsory care should not be used for this group of patients. (shrink)

In a Ulysses contract, A gets B, at t1, to agree (i) to act at t2 in such a way that A is made to abide by her own earlier intentions and (ii) to ignore A’s later attempt to rescind the authorization. But why does A’s will at t2 lack the authority it had at t1? This article makes the case that a person has authority to enter a Ulysses contract only insofar as her expressed will at t1 is a (...) better expression of the values that remain attributable to her at t2 than is her expressed will at t2. (shrink)

Substituted judgment has increasingly become the accepted standard for rendering decisions for incapacitated adults in the USA. A broad exception exists with regard to patients with diminished capacity secondary to depressive disorders, as such patients’ previous wishes are generally not honoured when seeking to turn down life-preserving care or pursue aid-in-dying. The result is that physicians often force involuntary treatment on patients with poor medical prognoses and/or low quality of life as a result of their depressive symptoms when similarly situated (...) incapacitated patients without such depressive symptoms would have their previous wishes honoured via substituted judgment. This commentary argues for reconsidering this approach and for using a substituted judgment standard for a subset of EMP/LQL patients seeking death. (shrink)

Clinicians are often called upon to assess the capacity of a patient to appoint a healthcare agent. Although a consensus has emerged that the standard for such assessment should differ from that for capacity to render specific healthcare decisions, exactly what standard should be employed remains unsettled and differs by jurisdiction. The current models in use draw heavily upon analogous methods used in clinical assessment, such as the “four skills” approach. This essay proposes an alternative model that relies upon categorization (...) and sliding scale risk assessment that can be used to determine to how much scrutiny the proxy appointment should be subjected and how much certainty of accuracy should be required in order to maximize the patient’s autonomy and ensure that her underlying wishes are met. (shrink)

I examine current models of self-destructive addictive behaviour, and argue that there is an important place for Ulysses contracts in coping with addictive behaviour that stems from certain problematic preference structures. Given the relevant preference structures, interference based on a Ulysses contract need not involve questionably favouring an agent’s past preferences over her current preferences, but can actually be justified in terms of the agent’s current concerns and commitments.

Since the advent of drug regulation in 1962, regulatory agencies have been in the practice of using strict standards to test the safety and efficacy of medical treatments and products. Regulatory agencies, such as the FDA, demand two full-fledged Randomized Clinical Trials demonstrating the safety and effectiveness of drugs to grant its marketing authorization. On the contrary, surgical treatments are left completely unregulated. There are several reasons explaining this difference, and all of them point to the difficulty of conducting well-designed (...) RCTs in surgery. However, we argue that none of these arguments is decisive and that, under certain conditions, surgical RCTs can be morally justified and methodologically sound. Although ethical constraints restrict the number of testable surgical procedures, and surgical trials might not be as dependable as pharmaceutical RCTs, our analysis suggests that, in certain cases, it is possible to obtain high-quality evidence about the safety and efficacy of surgical procedures. Untested surgical treatments may prove to be ineffective and harm patients. Therefore, regulation of surgical procedures seems not only morally acceptable and able to provide reliable scientific evidence, but also desirable and justified from an ethical-political standpoint. (shrink)