For people with Bipolar Affective Disorder, a self-binding (advance) directive (SBD), by which they commit themselves to treatment during future episodes of mania, even if unwilling, can seem the most rational way to deal with an imperfect predicament. Knowing that mania will almost certainly cause enormous damage to themselves, their preferred solution may well be to allow trusted others to enforce treatment and constraint, traumatic though this may be. No adequate provision exists for drafting a truly effective SBD and efforts (...) to establish such provision are hampered by very valid, but also paralysing ethical, clinical and legal concerns. Effectively, the autonomy and rights of people with bipolar are being 'protected' through being denied an opportunity to protect themselves. From a standpoint firmly rooted in the clinical context and experience of mania, this article argues that an SBD, based on a patient-centred evaluation of capacity to make treatment decisions (DMC-T) and grounded within the clinician-patient relationship, could represent a legitimate and ethically coherent form of self-determination. After setting out background information on fluctuating capacity, mania and advance directives, this article proposes a framework for constructing such an SBD, and considers common objections, possible solutions and suggestions for future research. (shrink)

Next SectionThe principle of respect for autonomy has shaped much of the bioethics' discourse over the last 50 years, and is now most commonly used in the meaning of respecting autonomous choice. This is probably related to the influential concept of informed consent, which originated in research ethics and was soon also applied to the field of clinical medicine. But while available choices in medical research are well defined, this is rarely the case in healthcare. Consideration of ordinary medical practice (...) reveals that the focus on patient choice does not properly grasp the moral aspects involved in healthcare. Medical decisions are often portrayed as if doctors and patients in confidence confront specific decisions about examinations or treatment, yet the reality often involves many different participants, with decisions being made over time and space. Indeed, most of the decisions are never even presented to patients, as it would be unethical to suggest something that is not medically justifiable. The options patients do confront are somewhat arbitrarily constructed within the narrow framework of both what is deemed to be medically appropriate and how the healthcare system is organised practically. While the autonomy discourse has proven valuable, a failure to distinguish between the fields of medical research and clinical medicine has generated a focus on patient choice that does not reflect what is really at stake in healthcare settings. This is alarming, because the current discourse misrepresents medical practice in a way that actually contributes to bioethical self-delusion. (shrink)

Patients with borderline personality disorder (BPD) 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: (1) the patient lacking free will, (2) Ulysses contracts as self-paternalism, (3) the patient lacking decision competence, (4) Ulysses contracts as (...) a defence of the authentic self, and (5) 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)

This paper presents four arguments in favour of respecting Ulysses Contracts in the case of individuals who suffer with severe chronic episodic mental illnesses, and who have experienced spiralling and relapse before. First, competence comes in degrees. As such, even if a person meets the usual standard for competence at the point when they wish to refuse treatment (time 2), they may still belesscompetent than they were when they signed the Ulysses Contract (time 1). As such, even if competent at (...) time 1andtime 2, there can still be a disparity between thelevelsof competence at each time. Second, Ulysses Contracts are important to protect people’smost meaningfulconcerns. Third, on the approach defended, the restrictions to people’s liberty would be temporary, and would be consistent with soft paternalism, rather than hard paternalism: the contracts would be designed in such a way that individuals would be free to change their minds, and to change or cancel their Ulysses Contracts later. Finally, even if one rejects the equivalence thesis (the claim that allowing harm is as bad as doing harm), this is still consistent with the claim that, inparticular cases, it can be as wrong toallowa harm as to do a harm. Nevertheless, controversies remain. This paper also highlights several safeguards to minimise risks. Ultimately, we argue that people who are vulnerable to spiralling deserve a way to protect their autonomy as far as possible, using Ulysses Contracts when necessary. (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)

Definition of the problem “Ulysses contracts” are advance directives by means of which a patient authorizes compulsory treatment for a phase of a temporary inhibition of competence. Ethical discussion of Ulysses contracts usually focuses on the question of the “moral authority” or the “binding force” of Ulysses contracts, i.e., of whether Ulysses contracts should be honored or whether the competent patient’s prospective wishes for compulsory treatment are overridden by the patient’s actual preferences in the situation of treatment. Arguments In this (...) contribution, I argue that, even if the Ulysses contract undoubtedly applies to the actual situation, there may be reasons for not acting upon it. The main argument is that acting in conformity to a Ulysses contract may be justified but nevertheless wrong. After some terminological clarifications, I argue that Ulysses contracts justify the use of compulsory treatment but do not necessarily make it the right course of action. They authorize physicians to act in accordance with the patient’s advance directive and, thereby, protect them from blame and sanctions in case they administer compulsory treatment. Whether compulsory treatment is right or wrong, however, hinges on whether the patient retrospectively consents to it. It may be the case that administering compulsory treatment in conformity to the Ulysses contract is justified but turns out to be wrong if the patient does not retrospectively consent to it. It may also be the case that not obeying the Ulysses contract turns out to be right if the patient retrospectively consents to not following it. Conclusion In view of this, I conclude that Ulysses contracts should not be seen as morally binding and that they should not be made legally binding. They are not normatively on par with other advance directives that relate to, for example, states of dementia. (shrink)

A ‘Ulysses arrangement’ (UA) is an agreement where a patient may arrange for psychiatric treatment or non-treatment to occur at a later stage when she expects to change her mind. In this article, I focus on ‘competence-insensitive’ UAs, which raise the question of the permissibility of overriding the patient’s subsequent decisionally competent change of mind on the authority of the patient’s own prior agreement. In “The Ethical Justification for Ulysses Arrangements”, I consider sceptical and supportive arguments concerning competence-insensitive UAs, and (...) argue that there are compelling reasons to give such UAs serious consideration. In “Decisional Competence and Legal Capacity in UAs”, I examine the nature of decisional competence and legal capacity as they arise in UAs, an issue neglected by previous research. Using the distinctions which emerge, I then identify the legal structure of a competence-insensitive UA in terms of the types of legal capacity it embodies and go on to explain how types of legal capacity might be shared between the patient and a trusted other to offer support to the patient in the creation and implementation of a competence-insensitive UA. This is significant because it suggests possibilities for building patient support mechanisms into models of legal UAs, which has not addressed in the literature to date. Drawing on this, in “Using Insights from the Competence/Capacity Distinction to Enhance Patient Support in UAs”, I offer two possible models to operationalize competence-insensitive UAs in law that allow for varying degrees of patient support through the involvement of a trusted other. Finally, I outline some potential obstacles implementing these models would face and highlight areas for further research. (shrink)

Women recognise that labour represents a mind-altering event that may affect their ability to make and communicate decisions and choices. For this reason, birth plans and other pre-labour directives can represent a form of Ulysses contract: an attempt to make binding choices before the sometimes overwhelming circumstances of labour. These choices need to be respected during labour, but despite the reduced decisional and communicative capacity of a labouring woman, her choices, when clear, should supersede decisions made before labour.

A debate persists over how to distinguish manic states from non-manic ones (such as depressions). A lacuna exists amongst these efforts, where a specifically agentive account of mania would sit. An agentive account centers the manic person’s view of practical reasons, rationalizing their actions in the same way that sympathetic understandings rationalize the actions of more neurotypical agents. In this paper, I argue that mania restructures our agency by creating a pervasive sense of urgency. This urgency changes the kind of (...) handling that our practical reasons seem to call out for. Whilst this can make us less reliable as agents, I argue that this does not undermine the basic capacities on which personal autonomy is founded. The greater threat to manic agents’ autonomy is nonrecognition of this restructured agency, undermining autonomy in its social dimensions. Without an agentive account, we will fail to recognize distinctly manic agency when we see it, limiting our understanding of autonomy, and withholding recognition, fundamental to autonomy in its social dimensions, from manic agents. (shrink)

Rapid advancement of technologies continues to revolutionize healthcare foundations and outlook. Technological progress in medicine are not only continuing to improve quality of individual life but also generally improving quality of healthcare services. As a matter of fact, the most significant change in healthcare systems was the shift from standardized, patronizing and rigid physician–patient relationship to more patient-focused, personalized and participatory practice. With this shift came increased attention to the assurance of patient’s right to autonomy. Therefore, this article aims to (...) discuss principal problematic aspects of patient’s right to autonomy hereby the patient’s role in the context of technologies and innovation. It is argued, that one of the effective ways to ensure patient’s right to autonomy is implementation of legal instruments, such as informed consent, advance directives and Ulysses contracts. However, this article also proposes, that with a potential of new technologies and artificial intelligence, these legal instruments need to be reconsidered and transformed in more efficient and eligible model, presenting information in more individualized, appealing and convenient manner. (shrink)

Next SectionMaking threats and offers to patients is a strategy used in community mental healthcare to increase treatment adherence. In this paper, an ethical analysis of these types of proposal is presented. It is argued (1) that the primary ethical consideration is to identify the professional duties of care held by those working in community mental health because the nature of these duties will enable a threat to be differentiated from an offer, (2) that threatening to act in a way (...) that would equate with a failure to uphold the requirements of these duties is wrong, irrespective of the benefit accrued through treatment adherence and (3) that making offers to patients raises a number of secondary ethical considerations that need to be judged on their own merit in the context of individual patient care. The paper concludes by considering the implications of these arguments, setting out a pathway designed to assist community mental healthcare practitioners to determine whether making a specific proposal to a patient is right or wrong. (shrink)

Distributive egalitarians believe that distributive justice is to be explained by the idea of distributive equality (DE) and that DE is of intrinsic value. The socio-relational critique argues that distributive egalitarianism does not account for the “true” value of equality, which rather lies in the idea of “equality as a substantive social value” (ESV). This paper examines the socio-relational critique and argues that it fails because – contrary to what the critique presupposes –, first, ESV is not conceptually distinct from (...) DE, and second, the idea of ESV cannot serve as a “foundation” or “root” of distributive egalitarianism. (shrink)

There are three lines of argument in defence of coercive treatment of patients with mental disorders: arguments regarding (1) societal interests to protect others, (2) the patients' own health interests, and (3) patient autonomy. In this paper, we analyse these arguments in relation to an idealized case, where a person with a mental disorder claims not to want medical treatment for religious reasons. We also discuss who should decide what in situations where patients with mental disorders deny treatment on seemingly (...) rational grounds.We conclude that, in principle, coercive treatment cannot be defended for the sake of protecting others. While coercive actions can be acceptable in order to protect close family and others, medical treatment is not justified for such reasons but should be given only in the interest of patients. Coercive treatment may be required in order to promote the patient's health interests, but health interests have to waive if they go against the autonomous interests of the patient. We argue that non-autonomous patients can have reasons, rooted in their deeply-set values, to renounce compulsory institutional treatment, and that such reasons should be respected unless it can be assumed that their new predicaments have caused them to change their views. (shrink)

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)

Deep brain stimulation is an invasive technique designed to stimulate certain deep brain regions for therapeutic purposes and is currently used mainly in patients with neurodegenerative disorders, such as Parkinson’s disease. However, DBS is also used increasingly for other experimental applications, such as the treatment of psychiatric disorders, weight reduction. Apart from its therapeutic potential, DBS can cause severe adverse effects, some that might also have a significant impact on the patient’s personality and autonomy by the external stimulation of DBS (...) which effects lie beyond the individual’s control and free will. The article’s purpose is to outline the procedures of DBS currently used in therapeutic and experimental applications and to discuss the ethical concerns regarding this procedure. It will address the clinical benefit-risk-ratio, the particular ethics of research in this field, and the ethical issues raised by affecting a patient’s or an individual’s personality and autonomous behaviour. Moreover, a potential ethical guideline, the Ulysses contract is discussed for the field of clinical application as well as the question of responsibility. (shrink)