Legal restrictions of the right to self-determination increasingly pretend to be compatible with the liberal concept of autonomy: they act upon a ‘soft’ or autonomy-orientated paternalistic rationale. Conventional liberal critique of paternalism turns out to be insensitive to the intricate normative problems following from ‘soft’ or ‘libertarian’ paternalism. In fact, these autonomy-oriented forms of paternalism could actually be even more problematic and may infringe liberty rights even more intensely than hard paternalistic regulation. This paper contributes to the systematic differentiation of (...) soft and hard paternalism by discussing the (legal) concept of autonomy and elaborates the moral and legal limits of autonomy-orientated paternalism. (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...) is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

Substance addiction affects millions of individuals worldwide and yet there is no consensus regarding its conceptualisation. Recent neuroscientific developments fuel the view that addiction can be classified as a brain disease, whereas a different body of scholars disagrees by claiming that addictive behaviour is a choice. These two models, the Brain Disease Model and the Choice Model, seem to oppose each other directly. This article contends the belief that the two models in the addiction debate are polar opposites. It shows (...) that it is not the large amount of addiction research in itself what sets the models apart, but rather their extrapolated conclusions. Moreover, some of the most fiercely debated aspects - for instance, whether or not addiction should be classified as a disease or disorder - are irrelevant for the conceptualisation of addiction. Instead, the real disagreement is shown to revolve around capacities. Discussing addiction-related capacities, especially regarding impaired control, rather than the assumed juxtaposition of the two models can be considered the true addiction debate. More insight into the extent to which the capacities of the addicted individual were affected would be highly useful in various other areas, especially legal responsibility. (shrink)

Substance addiction affects millions of individuals worldwide and yet there is no consensus regarding its conceptualisation. Recent neuroscientific developments fuel the view that addiction can be classified as a brain disease, whereas a different body of scholars disagrees by claiming that addictive behaviour is a choice. These two models, the Brain Disease Model and the Choice Model, seem to oppose each other directly. This article contends the belief that the two models in the addiction debate are polar opposites. It shows (...) that it is not the large amount of addiction research in itself what sets the models apart, but rather their extrapolated conclusions. Moreover, some of the most fiercely debated aspects - for instance, whether or not addiction should be classified as a disease or disorder - are irrelevant for the conceptualisation of addiction. Instead, the real disagreement is shown to revolve around capacities. Discussing addiction-related capacities, especially regarding impaired control, rather than the assumed juxtaposition of the two models can be considered the true addiction debate. More insight into the extent to which the capacities of the addicted individual were affected would be highly useful in various other areas, especially legal responsibility. (shrink)

This paper explores how transformative experience generates decision-making problems of particular seriousness in medical settings. Potentially transformative experiences are especially likely to be encountered in medicine, and the associated decisions are confronted jointly by patients and clinicians in the context of an imbalance of power and expertise. However in such scenarios the principle of informed consent, which plays a central role in guiding clinicians, is unequal to the task. We detail how the principle’s assumptions about autonomy, rationality and information handle (...) transformative experiences poorly, appealing to several difficult cases for medical decision-making to illustrate the resulting problem, and we consider how the existing literature on complications with consent fails to offer a resolution. We argue that recognition of the problem has a role to play in achieving a more effective response to transformative decisions. In Sect. 1 we introduce several representative cases of challenging patient decision-making that clinicians might face. In Sect. 2 we detail how transformative experience has been analysed in the recent literature, before outlining in Sect. 3 the theoretical basis of the principle of informed consent, which plays a central role in how clinicians are expected to support decision-making. In Sect. 4, having laid the groundwork for a clear description, we return to the cases given in Sect. 1 to confirm how their transformative nature presents a problem: either clinicians treat the decisions faced by these patients as ‘normal’, encouraging them to focus on information provision that patients may be unable to act on, or they treat them as transformative, in which case they lack the resources to recognise whether they are helping patients make (subjectively) good decisions. In Sect. 5 we argue that the existing literature does not offer any escape from this problem. We close in Sect. 6 by noting the significant impact that appreciating the problem of transformative experience could have on supporting transformative decisions in medicine and briefly suggesting how we might aim to develop new approaches to dealing with these. (shrink)

Background Empirical studies of surrogate decision-making tend to assume that surrogates should make only a 'substituted judgement'—that is, judge what the patient would want if they were mentally competent. Objectives To explore what people want in a surrogate decision-maker whom they themselves select and to test the assumption that people want their chosen surrogate to make only a substituted judgement. Methods 30 undergraduate students were recruited. They were presented with a hypothetical scenario about their expected loss of mental capacity in (...) the future and asked to answer some questions about their choice of surrogate. These data were analysed qualitatively using thematic content analysis. Results Most respondents talked about choosing someone who was caring and competent in certain ways, giving interesting evidence for their judgements. Surprisingly few highlighted how well they thought their chosen surrogate knew their preferences and would be able to make a substituted judgement. Moreover, few specified that their chosen surrogate had similar attitudes and values to their own and so would make a similar decision to theirs in the circumstances presented. Some respondents also referred to the social role of their chosen surrogate or the social dynamics of their situation which influenced their choices, as well as to ideas of reciprocity and characteristics of honesty and loyalty. Conclusion In the event that they lose mental capacity, many people will not select a surrogate to decide about medical treatments on their behalf solely on the basis that they expect their surrogate to make a substituted judgement. (shrink)

The paper investigates whether it is plausible to hold the late stage demented criminally responsible for past actions. The concern is based on the fact that policy makers in the United States and in Britain are starting to wonder what to do with prison inmates in the later stages of dementia who do not remember their crimes anymore. The problem has to be expected to become more urgent as the population ages and the number of dementia patients increases. This paper (...) argues that the late-stage demented should not be punished for past crimes. Applicable theories of punishment, especially theories with an appropriate expressivist, or communicative element, fail to justify the imprisonment of the late-stage demented. Further imprisonment would require a capacity for comprehension on the part of the punished, and, under certain narrowly specified conditions, even a capacity to be at least in principle capable of recalling the crime again. (shrink)

The predominant ethical framework for addressing reproductive decisions in the maternal–fetal relationship is respect for the woman's autonomy. However, when a pregnant schizophrenic woman lacks such autonomy, healthcare providers try to both protect her and respect her preferences. By delineating etic (objective) and emic (subjective) perspectives on vulnerability, I argue that options which balance both perspectives are preferable and that acting on etic perspectives to the exclusion of emic considerations is rarely justified. In negotiating perspectives, we balance the etic commitment (...) to protect the vulnerable patient and her fetus from harm with the emic concern to empower a decisionally incapacitated woman. Equilibrium is best achieved by nurturing interdependent relationships that empower and protect the vulnerable woman. The analysis points to the need for better social support for mentally ill patients. (shrink)

Background Making the right decisions, while simultaneously showing respect for patient autonomy, represents a great challenge to nursing home staff in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation to dying patents in end-of-life. Objectives To study how physicians and nurses protect nursing home patients' autonomy in end-of-life decisions, and how they justify their practice. Design A qualitative descriptive design with analysis of the content of transcribed in-depth interviews with physicians and nurses. Participants Nine physicians and ten nurses in (...) 10 nursing homes in Norway. Results and interpretations Assessment of the patient's competence to consent to treatment is almost absent. The physicians build their practice on the principles of beneficence and nonmaleficence. Nurses tend to trust the patients' rejection of life support, even when the patients have difficulty speaking or suffer from dementia. Relatives were, according to the health personnel, included in decision-making processes to a very limited extent. However, futile life support is sometimes provided contrary to the physicians' judgement of what constitutes the patient's best interest on occasions when they are pressurised by next of kin. Conclusions The study reveals a need to improve decision-making routines according to ethical ideals and legislation. Conflicts between relatives and healthcare professionals in the decision-making process deflect the focus from searching for the best possible treatment for the terminal patient. Further discussion is required as to whether the concept of autonomy is applicable in situations in which the patient is impaired and dying. (shrink)

This paper examines the ethicalproblems that arise when research is carriedout after autopsy on dead infants. It comparesthe right of parents against that of the publicinterest in matters of research on dead minors. The basis for the respect that is widelyaccorded to the body of a dead person isexamined and is shown to ground the parentalinterest. A discussion of the nature of thefamily suggests that `informed consent' is notthe best term to apply to the process ofparental consultation. Some reasons areprovided (...) against using this term in the contextin which bereaved parents are consulted aboutautopsy and research on their dead infants. Itis suggested that a term such as `authorize'might better apply to this situation. (shrink)

Josh is a typical 27-year-old in a career that he enjoys and a successful marriage. Josh begins to exhibit the symptoms of a manic episode. He is soon diagnosed with bipolar disorder. While non-manic, Josh’s preferences are typical. While manic, his preferences change dramatically. He quits his job, cheats on his partner, and squanders his savings. These are behaviors that Josh, when non-manic (euthymic), would never agree to. When Josh returns to a euthymic state, he regrets these decisions. Should those (...) close to Josh have prevented him from making these decisions, or does his competence to decide persist despite his acute mania? In this paper, I examine the connections be-tween bipolar disorder and consent. I defend the view that many (although far from all) individuals with bipolar disorder are competent to consent to a wide variety of things when they are in a manic state. This means that mania should not be presumed to undermine competence in clinical settings. -/- I have several goals in this paper. I want to bring philosophy to bear on the connection between consent and bipolar disorder. Additionally, I intend this paper to contribute to the general debate about the conditions of informed consent. Bipolar disorder presents novel challenges to existing conceptions of competence to consent which require stable core of values for an agent to be competent. For example, Buchanan and Brock endorse such a view. In showing that shifting values do not undermine the competence of a person experiencing acute mania, I show that the aforementioned views of competence are false. Overall, this paper makes substantive contributions to the debate about competence to consent and presents the first sustained philosophical treatment of consent among people with bipolar disorder. (shrink)

Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue that the (...) best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (shrink)

Two general ethical problems in psychiatry are thrown into sharp relief by long term care. This article discusses each in turn, in the context of two anonymised case studies from actual clinical practice. First, previous mental health legislation soothed doubts about patients' refusal of consent by incorporating time limits on involuntary treatment. When these are absent, as in the provisions for long term care which have recently come into force, the justification for compulsory treatment and supervision becomes more obviously problematic. (...) Second, Anglo-American law does not normally allow the preventive detention of someone who may be dangerous but has not actually committed any crime. The justification for detaining a possibly dangerous user of mental health services without his or her consent can only be based on risk assessment, but this raises issues of moral luck. Is the psychiatrist who decides not to take out a supervision order for a possibly dangerous patient with an initial psychotic diagnosis morally at fault if that person harms someone in the community, or himself? Or is the psychiatrist merely unlucky? (shrink)

Considerations of justice and concern for well-being support conducting mental health research and addressing ethical concerns specific to mental health research are critical. We discuss these concerns, provide recommendations to enable the ethical conduct of mental health research, and argue that participants’ interests should be given primary weight in resolving apparent dilemmas. We also comment on provisions of two legislative actions in India relevant to mental health research: Rights of Persons with Disability Act 2016 and the Mental Health Care Act (...) 2017. Both conform to the 2006 United Nations Convention on Rights of Persons with Disabilities of which India is a signatory. Both provide protections and enumerate rights relevant to people with mental health conditions but with differing focus. The commonalities and differences between the three are discussed in the background of international literature on research in mental health conditions. Studies involving deception and future directions for ethical requirements regarding genetic research are discussed. (shrink)

On the standard view we assess a person’s competence by considering her relevant abilities without reference to the actual decision she is about to make. If she is deemed to satisfy certain threshold conditions of competence, it is still an open question whether her decision could ever be overruled on account of its harmful consequences for her (‘hard paternalism’). In practice, however, one normally uses a variable, risk dependent conception of competence, which really means that in considering whether or not (...) to respect a person’s decision-making authority we weigh her decision on several relevant dimensions at the same time: its harmful consequences, its importance in terms of the person’s own relevant values, the infringement of her autonomy involved in overruling it, and her decision-making abilities. I argue that we should openly recognize the multi-dimensional nature of this judgment. This implies rejecting both the threshold conception of competence and the categorical distinction between hard and soft paternalism. (shrink)

Employing the National Institute of Mental Health-funded Prevention of Suicide in Primary Care Elderly Collaborative Trial as a case study, we discuss 2 sets of ethical issues: obtaining informed consent for a clinic-based intervention study and using treatment as usual (TAU) as the control condition. We then address these ethical issues in the context of the debate about the quality improvement efforts of health care organizations. Our analysis reveals the tension between ethics and scientific integrity involved with using TAU as (...) a control condition and the difficulty in designing high-quality research in a community-based setting. (shrink)

We argue that the current ethical and regulatory framework for permissible risk levels in pediatric research can be helpfully understood in terms of children’s moral right to adequate protection from harm. Our analysis provides a rationale for what we propose as the highest level of permissible risk in pediatric research without the prospect of direct benefit: what we call “relatively minor” risk. We clarify the justification behind the usual standards of “minimal risk” and “a minor increase over minimal risk” and (...) explain why it is permissible to impose any risks at all on child participants who do not stand to benefit directly from enrollment in research. Finally, we illuminate some aspects of the concept of “best interests.”. (shrink)

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit (...) and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that “creates” that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making. (shrink)

sirIn a scholarly and thought-provoking paper, Clarke sets out to debunk the concept of “rational suicide” as nonsensical.1 His motivation in this is to undermine any support that the notion of rational suicide might give to a “categorical right to suicide”. If his enterprise were successful, however, it would go far beyond the “rights issue” and would have a profound impact on all arguments raised in support of euthanasia or physician-assisted suicide.Clarke's major thrust might be termed the argument from posthumous (...) ignorance. He begins with a claim that the process of making a rational decision involves the process of “gaining all possible facts and `imagining' all possible consequences”. He goes on to say that making a rational decision “in the consideration of life or death . . . would seem to be impossible”. It is “impossible” …. (shrink)

Honoring a living will typically involves treating an incompetent patient in accord with preferences she once had, but whose objects she can no longer understand. How do we respect her precedent autonomy by giving her what she used to want? There is a similar problem with subsequent consent: How can we justify interfering with someone''s autonomy on the grounds that she will later consent to the interference, if she refuses now?Both problems arise on the assumption that, to respect someone''s autonomy, (...) any preferences we respect must be among that person''s current preferences. I argue that this is not always true. Just as we can celebrate an event long after it happens, so can we respect someone''s wishes long before or after she has that wish. In the contexts of precedent autonomy and subsequent consent, the wishes are often preferences about which of two other, conflicting preferences to satisfy. When someone has two conflicting preferences, and a third preference on how to resolve that conflict, to respect his autonomy we must respect that third preference. People with declining competence may have a resolution preference earlier, favoring the earlier conflicting preference (precedent autonomy), whereas those with rising competence may have it later, favoring the later conflicting preference (subsequent consent). To respect autonomy in such cases we must respect not a current, but a former or later preference. (shrink)

Purpose Although surrogate decision-making is prevalent in intensive care units and concerns with decision quality are well documented, little is known about how clinicians help family members understand the surrogate role. We investigated whether and how clinicians provide normative guidance to families regarding how to function as a surrogate. Subjects and methods We audiorecorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death. We developed and applied a (...) coding framework to identify normative statements by clinicians regarding what considerations should guide surrogates’ decisions, including whether clinicians explained one or more of Buchanan and Brock’s three standard principles of SDM to family members. Results Clinicians made at least one statement about how to perform the surrogate role in 24 conferences ). We observed three general types of normative guidance provided to surrogates, with some conferences containing more than one type of guidance: counselling about one or more standard principles of SDM ; counselling surrogates to make decisions centred on the patient as a person, without specifying how to accomplish that ; and counselling surrogates to make decisions based on the family’s values. Conclusions Clinicians did not provide normative guidance about the surrogate role in two-thirds of family conferences for incapacitated patients at high risk for death. When they did, clinicians’ guidance was often incomplete and sometimes conflicted with standard principles of SDM. Future work is needed to understand whether providing explicit guidance on how to perform the surrogate role improves decision-making or mitigates surrogates’ psychological distress. (shrink)

We aim to establish the following claim: other factors held constant, the relative weights of the epistemic burdens of competing treatment options serve to determine the options that patient surrogates pursue. Simply put, surrogates confront an incentive, ceteris paribus, to pursue treatment options with respect to which their knowledge is most adequate to the requirements of the case. Regardless of what the patient would choose, options that require more knowledge than the surrogate possesses (or is likely to learn) will either (...) be neglected altogether or deeply discounted in the surrogate’s incentive structure. We establish this claim by arguing that the relation between epistemic burdens and incentives in decision-making is a general feature of surrogate decision-making. After establishing the claim, we draw out some of the implications for surrogate decision-making in medicine and offer philosophical and psychological explanations of the phenomenon. (shrink)

A review of medical ethics literature relating to the importance of the participation of patients in decision-making introduces the role of rights-based mediation as a voluntary process now being developed innovatively in America. This is discussed in relation to the theory of communicative ethics and moral personhood. References are then made to the work of medical ethics committees and the role of mediation within these. Finally it is suggested that mediation is part of an eirenic ethic already being used informally (...) in good patient care, and that there is a case for developing it further. (shrink)

Despite clear legislative and judicial support, a well established ethical consensus, and increased efforts at information dissemination and education, proxy decision making for incapacitated patients continues to produce moral muddle and poor resolutions in end-of-life care.In her analysis of the proxy-doctor relationship, Nancy Dubler spells out the institutionalized patterns that keep the promise of proxy directives so often unrealized. Facing medically complex care of an incapacitated patient, health care teams are apt to view the proxy as a potentially indecisive or (...) unrealistically demanding decision-maker, less a stand-in for the patient than an interloper whose improper, misguided, or self-interested decisions will work against the patient's best interests. So perceived, proxies are routinely relegated to the edges of care planning discussions, left relatively uninformed and unconsulted, and then suddenly thrust center stage to face decisions they find overwhelming. Confronting such decisions, proxies need support and compassion. What they often find is isolation and distrust, a web of professional and institutional practices that trammel their efforts to understand and execute their role. (shrink)

Despite clear legislative and judicial support, a well established ethical consensus, and increased efforts at information dissemination and education, proxy decision making for incapacitated patients continues to produce moral muddle and poor resolutions in end-of-life care.In her analysis of the proxy-doctor relationship, Nancy Dubler spells out the institutionalized patterns that keep the promise of proxy directives so often unrealized. Facing medically complex care of an incapacitated patient, health care teams are apt to view the proxy as a potentially indecisive or (...) unrealistically demanding decision-maker, less a stand-in for the patient than an interloper whose improper, misguided, or self-interested decisions will work against the patient's best interests. So perceived, proxies are routinely relegated to the edges of care planning discussions, left relatively uninformed and unconsulted, and then suddenly thrust center stage to face decisions they find overwhelming. Confronting such decisions, proxies need support and compassion. What they often find is isolation and distrust, a web of professional and institutional practices that trammel their efforts to understand and execute their role. (shrink)

Rapid advances in neuroscience may enable us to identify the neural correlates of ordinary decision making. Such knowledge opens up the possibility of acquiring highly accurate information about people’s competence to consent to medical procedures and to participate in medical research. Currently we are unable to determine competence to consent with accuracy and we make a number of unrealistic practical assumptions to deal with our ignorance. Here I argue that if we are able to detect competence to consent and if (...) we are able to develop a reliable neural test of competence to consent, then these assumptions will have to be rejected. I also consider and reject three lines of argument that might be developed by a defender of the status quo in order to protect our current practices regarding judgments of competence in the face of the availability of information about the neural correlates of ordinary human decision making. (shrink)

In order to involve children in the decision-making process about participation in medical research it is widely recommended that the child’s assent be sought in addition to parental consent. However, the concept of assent is fraught with difficulties, resulting in confusion among researchers and ethics committees alike.

Heroin prescription involves the medical provision of heroin in the treatment of heroin addiction. Rudimentary clinical trials on that treatment modality have been carried out and others are currently underway or in development. However, it is questionable whether subjects considered for such trials are mentally competent to consent to them. The problem has not been sufficiently appreciated in ethical and clinical discussions of the topic. The challenges involved throw new light on the role of value and accountability in contemporary discussions (...) of mental competence. (shrink)

A governing principle in medical ethics is respect for patient autonomy. This principle is commonly drawn upon in order to argue for the permissibility of assisted dying. In this paper I explore the proper role that respect for patient autonomy should play in this context. I argue that the role of autonomy is not to identify a patient’s best interests, but instead to act as a side-constraint on action. The surprising conclusion of the paper is that whether or not it (...) is in the best interests for the patient to die is a morally objective matter. This allows for the possibility that it can be in the best interests of the patient to die even if she autonomously considers it to be in her best interest to continue living. I argue that concerns about ‘mandatory’ euthanasia can be met when patient autonomy is respected as a side-constraint on action. Ultimately, this means that assisted dying is permissible, not because the autonomous patient views her suffering to be unbearable, but because it is in her objective best interests and she permitted it via her consent. (shrink)

Douglas Diekema has argued that it is not the best interest standard, but the harm principle that serves as the moral basis for ethicists, clinicians, and the courts to trigger state intervention to limit parental authority in the clinic. Diekema claims the harm principle is especially effective in justifying state intervention in cases of religiously motivated medical neglect in pediatrics involving Jehovah’s Witnesses and Christian Scientists. I argue that Diekema has not articulated a harm principle that is capable of justifying (...) state intervention in these cases. Where disagreements over appropriate care are tethered to metaphysical disagreements, it is moral-metaphysical standards, rather than merely moral standards, that are needed to provide substantive guidance. I provide a discussion of Diekema’s harm principle to the broader end of highlighting an inconsistency between the theory and practice of secular bioethics when overriding religiously based medical decisions. In a secular state, ethicists, clinicians, and the courts are purportedly neutral with respect to moral-metaphysical positions, especially regarding those claims considered to be religious. However, the practice of overriding religiously based parental requests requires doffing the mantle of neutrality. In the search for a meaningful standard by which to override religiously based parental requests in pediatrics, bioethicists cannot avoid some minimal metaphysical commitments. To resolve this inconsistency, bioethicists must either begin permitting religiously based requests, even at the cost of children’s lives, or admit that at least some moral-metaphysical disputes can be rationally adjudicated. (shrink)

Moral pluralism poses a foundational problem for secular clinical ethics: How can ethical dilemmas be resolved in a context where there is disagreement not only on particular cases, but further, on...

The national standards for clinical ethics consultation set forth by the American Society for Bioethics and Humanities endorse an “ethics facilitation” approach, which characterizes the role of the ethicist as one skilled at facilitating consensus within the range of ethically acceptable options. To determine the range of ethically acceptable options, ASBH recommends the standard model of decision-making, which is grounded in the values of autonomy, beneficence, nonmaleficence, and justice. H. Tristram Engelhardt Jr. has sharply criticized the standard model for presuming (...) contentful moral claims in circumscribing the range of ethically acceptable options, which, he argues, cannot be rationally justified in a pluralistic context. Engelhardt’s solution is a secular clinical ethics based on a contentless principle of permission. The first part of this article lays out Engelhardt’s negative claim, that reason cannot establish contentful moral claims, and his positive claim, that secular clinical ethics ought to be based on a contentless principle of permission. The second part critiques these negative and positive claims. The purpose of this paper is to defend secular clinical ethics expertise—defined as the ability of ethicists to offer justified moral recommendations grounded in consensus positions endorsed by the American Society for Bioethics and Humanities—from the radical critiques of Engelhardt, who argues that no moral or metaphysical claims, and hence no bioethical consensus, can be rationally justified. Engelhardt’s critiques have caused some to worry that secular clinical ethics is in a state of theoretical crisis; this article concludes that Engelhardt’s view is an unstable basis for that worry. (shrink)

Competent adults should be permitted to determine the course of their own lives. We may try to influence them. We may ask them, perhaps even implore them, to change their minds. But in the end, they are in charge of their lives. They get to choose their careers, whether and whom to marry, whether to exercise, and whether to have surgery.This emphasis on respect for patients’ autonomy may seem to imply that allowing patients to make their own decisions should always (...) take precedence over other considerations. Given this presumption, there has been almost no discussion in the medical literature or elsewhere about how important this value is and whether it should sometimes be balanced against and give way to other values. This absence of guidance is especially problematic in cases where respect for patient autonomy conflicts with promoting patients’ clinical interests. (shrink)

This article gives a brief introduction to the MacArthur Competence Assessment Tool-Treatment (MacCAT-T) and critically examines its theoretical presuppositions. On the basis of empirical, methodological and ethical critique it is emphasised that the cognitive bias that underlies the MacCAT-T assessment needs to be modified. On the one hand it has to be admitted that the operationalisation of competence in terms of value-free categories, e.g. rational decision abilities, guarantees objectivity to a great extent; but on the other hand it bears severe (...) problems. Firstly, the cognitive focus is in itself a normative convention in the process of anthropological value-attribution. Secondly, it misses the complexity of the decision process in real life. It is therefore suggested that values, emotions and other biographic and context specific aspects should be considered when interpreting the cognitive standards according to the MacArthur model. To fill the gap between cognitive and non-cognitive approaches the phenomenological theory of personal constructs is briefly introduced. In conclusion some main demands for further research to develop a multi-step model of competence assessment are outlined. (shrink)

Immunisation is offered to all age groups in the UK, but is mainly given to infants and school-age children. Such immunisation is not compulsory, in contrast to other countries, such as the United States. Levels of immunisation are generally very high in the UK, but the rates of immunisation vary with the public perception of the risk of side effects. This article discusses whether compulsory vaccination is acceptable by considering individual cases where parents have failed to give consent or have (...) explicitly refused consent for their children to be immunised. In particular, the rights of: a parent to rear his/her child according to his/her own standards; the child to receive health care, and the community to be protected from vaccine-preventable infectious disease are considered. The conclusion of the article is that compulsory vaccination cannot, with very few exceptions, be justified in the UK, in view of the high levels of population immunity which currently exist. (shrink)

In the USA and England and Wales, involuntary treatment for mental illness is subject to the constraint that it must be necessary for the health or safety of the patient, if he poses no danger to others. I will argue against this necessary condition of administering treatment and propose that the category of individuals eligible for involuntary treatment should be extended. I begin by focusing on the common disorder of schizophrenia and proceed to demonstrate that it can be a considerable (...) harm to a person's life without causing the person to be a danger to himself. I illuminate this claim by constructing a thought experiment concerning a person who slips on a banana peel and falls into a malfunctioning version of Robert Nozick's experience machine. I propose that the reasons why we should remove the person from the machine are the same reasons why we should administer involuntary treatment to individuals with schizophrenia. I rebut three objections to the analogy and conclude that if we believe that we have a duty to provide treatment for reasons relating to a person's wellbeing, it follows that we should reject the health or safety requirement and instead broaden the category of individuals who are eligible for involuntary treatment. (shrink)

ZusammenfassungPatientenverfügungen für spätere Zustände schwerer kognitiver Beeinträchtigungen, wie sie für Spätphasen der Demenz typisch sind, stoßen auf weitergehende Vorbehalte als Patientenverfügungen für anderweitige Zustände eingeschränkter Einwilligungsfähigkeit. Einer der Gründe dafür scheinen die ethischen und psychologischen Konflikte im Gefolge von Patientenverfügungen zu sein, mit denen Patienten in gesunden Tagen für bestimmte Phasen der Erkrankung die Nichtbehandlung interkurrenter Erkrankungen oder die Unterlassung künstlicher Ernährung verfügt haben, während sich unter den in der Patientenverfügung gemeinten Bedingungen keine Anzeichen finden, dass sie unter ihrer Situation (...) leiden. Der Beitrag argumentiert für diese Situation für eine „gemischte“ ethische Strategie: Patientenverfügungen im rechtlichen Sinne sollten insbesondere dann, wenn sie im Rahmen eines Advance Care Planning erstellt sind, befolgt werden, um zu verhindern, dass den Vorausverfügenden das Vertrauen in die spätere Befolgung ihres Wunsches nach Abbruch oder Nichtaufnahme medizinischer Behandlungen genommen wird. Dagegen sollten darüber hinausgehende „Pflegeverfügungen“ ohne rechtlich verbindlichen Status nur in Fällen beachtet werden, in denen zwischen vorausverfügtem und „natürlichem“ Willen Konkordanz besteht. (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)

Ethical and legal discourse pertaining to the ability to consent to treatment and research in England operates within a dualist framework of “competence” and “capacity”. This is confusing, as while there exists in England two possible senses of legal capacity – “first person” legal capacity and “delegable” legal capacity, currently neither is formulated to bear a necessary relationship with decision-making competence. Notwithstanding this, judges and academic commentators frequently invoke competence to consent in discussions involving the validity of offering or withholding (...) consent as a synonym for legal capacity to consent. I argue that this gives rise to a conflation, jeopardising clarity and consistency in law. This is somewhat less problematic in instances of “first-person” legal capacity that are heavily informed by criteria for decision-making competence than in the second sense of legal capacity, which is qualitatively different from decision-making competence, or with first-person legal capacity when defined in different terms from competence. The paper concludes by proposing that the soundest resolution to this problem is by making decision-making competence a necessary and sufficient condition of first-person legal capacity, affording a more scrupulous distinction between the two different forms of legal capacity that exist. (shrink)

For many years the prevailing paradigm for medical decision making for children has been the best interest standard. Recently, some authors have proposed that Mill’s “harm principle” should be used to mediate or to replace the best interest standard. This article critically examines the harm principle movement and identifies serious defects within the project of using Mill’s harm principle for medical decision making for children. While the harm principle proponents successfully highlight some difficulties in present-day use of the best interest (...) standard, the use of the harm principle suffers substantial normative and conceptual problems. A medical decision-making framework for children is suggested, grounded in the four principles. It draws on the best interest standard, incorporates concepts of harm, and provides two questions that can act as guide and limit in medical decision making for children. (shrink)

This work clarifies the role of the best interest standard (BIS) as ethical principle in the medical care of children. It relates the BIS to the ethical framework of medical practice. The BIS is shown to be a general principle in medical ethics, providing grounding to prima facie obligations. The foundational BIS of Kopelman and Buchanan and Brock are reviewed and shown to be in agreement with the BIS here defended. Critics describe the BIS as being too demanding, narrow, opaque, (...) not taking the family into account and not suitable as limiting principle. This work responds to these criticisms, showing that they do not stand up to scrutiny. They either do not apply to the BIS, only apply to misuses of the BIS or criticise a BIS that is not seriously defended in the literature. (shrink)

This article examines an argument which may negatively influence measles vaccination uptake. According to the argument, an individual child in a highly vaccinated society may be better off by being non-vaccinated; the child does not risk vaccine adverse effects and is protected against measles through herd immunity. Firstly, the conclusion of the argument is challenged by showing that herd immunity’s protection is unreliable and inferior to vaccination. Secondly, the logic of the argument is challenged by showing that the argument is (...) inherently self-defeating and therefore logically inconsistent. In practice the argument cannot be used to protect children against measles. Measles vaccination is undoubtedly best for children, even in highly vaccinated societies. Only if a medical contraindication to vaccination exists should vaccination be waived in favour of reliance on herd immunity. This places obligations on those who stand in care relationships with the child: parents, healthcare providers, and the state. (shrink)