Decision making for incompetent patients is a much-discussed topic in bioethics. According to one influential decision making standard, the substituted judgment standard, the decision that ought to be made for the incompetent patient is the decision the patient would have made, had he or she been competent. Although the merits of this standard have been extensively debated, some important issues have not been sufficiently explored. One fundamental problem is that the substituted judgment standard, as commonly formulated, is indeterminate in content (...) and thus offers the surrogate little or no guidance. What the standard does not specify is just how competent one should imagine the patient to be, and what else one ought to envision about the patient’s hypothetical outlook and the circumstances surrounding his or her decision making. The article discusses this problem of underdetermined decision conditions. (shrink)

This paper argues that the medical conception of health as absence of disease is a value-free theoretical notion. Its main elements are biological function and statistical normality, in contrast to various other ideas prominent in the literature on health. Apart from universal environmental injuries, diseases are internal states that depress a functional ability below species-typical levels. Health as freedom from disease is then statistical normality of function, i.e., the ability to perform all typical physiological functions with at least typical efficiency. (...) This conception of health is as value-free as statements of biological function. The view that health is essentially value-laden, held by most writers on the topic, seems to have one of two sources: an assumption that health judgments must be practical judgments about the treatment of patients, or a commitment to "positive" health beyond the absence of disease. I suggest that the assumption is mistaken, the commitment possibly misdescribed. (shrink)

Background Best interests is a ubiquitous principle in medical policy and practice, informing the treatment of both children and adults. Yet theory underlying the concept of best interests is unclear and rarely articulated. This paper examines bioethical literature for theoretical accounts of best interests to gain a better sense of the meanings and underlying philosophy that structure understandings. Methods A scoping review of was undertaken. Following a literature search, 57 sources were selected and analysed using the thematic method. Results Three (...) themes emerged. The first placed best interests within the structure of wider theory, noting relationships with consequentialism, deontology, prudential value theory, rights and political philosophy. The second mapped a typology of processes of decision-making, among which best interests was ambiguously positioned. It further indicated factors that informed best interests decision-making, primarily preferences, dignity and quality of life. The final theme considered best interests from a relational perspective. Conclusions Characterisation of best interests as strictly paternalist and consequentialist is questionable: while accounts often suggested a consequentialist basis for best interests, arguments appeared philosophically weak. Deontological accounts, found in law and Kantianism, and theories of political liberalism influenced accounts of best interests, with accounts often associating best interests with negative patient preferences (i.e. individual refusals). There was much more emphasis on negative interests than positive interests. Besides preference, factors like dignity and quality of life were held to inform best interests decisions, but generally were weakly defined. To the extent that preferences were unable to inform decision making, decisions were either made by proxy authority or by an intersubjective process of diffuse authority. Differing approaches reflect bifurcations in liberal philosophy between new liberalism and neo-liberalism. Although neither account of authority appears dominant, bias to negative interests suggests that bioethical debate tends to reflect the widespread ascendancy of neo-liberalism. This attitude was underscored by the way relational accounts converged on private familial authority. The visible connections to theory suggest that best interests is underpinned by socio-political trends that may set up frictions with practice. How practice negotiates these frictions remains a key question. (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)

Gilles de la Tourette syndrome (TS) is a childhood neuropsychiatric disorder characterised by the presence of motor and vocal tics. Patients with malignant TS experience severe disease sequelae; risking morbidity and mortality due to tics, self-harm, psychiatric comorbidities and suicide. By definition, those cases termed ‘malignant’ are refractory to all conventional psychiatric and pharmacological regimens. In these instances, deep brain stimulation (DBS) may be efficacious. Current 2015 guidelines recommend a 6-month period absent of suicidal ideation before DBS is offered to (...) patients with TS. We therefore wondered whether it may be ethically justifiable to offer DBS to a minor with malignant TS. We begin with a discussion of non-maleficence and beneficence. New evidence suggests that suicide risk in young patients with TS has been underestimated. In turn, DBS may represent an invaluable opportunity for children with malignant TS to secure future safety, independence and fulfilment. Postponing treatment is associated with additional risks. Ultimately, we assert this unique risk-benefit calculus justifies offering DBS to paediatric patients with malignant TS. A multidisciplinary team of clinicians must determine whether DBS is in the best interest of their individual patients. We conclude with a suggestion for future TS-DBS guidelines regarding suicidal ideation. The importance of informed consent and assent is underscored. (shrink)

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles upon which decisions are made (...) about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals. (shrink)

As a study involving diabetes care demonstrates, children sometimes have a much more sophisticated capacity for taking charge of their own health care decisions than is usually recognized in bioethics. Protecting these children from their disease means involving them in their treatment as much as possible, helping them to understand it and take responsibility for it so that they can navigate the multitude of daily decisions that become part of the diabetes medical regimen.

This chapter contains section titled: Introductory Of the Liberty of Thought and Discussion Of Individuality, as one of the Elements of Well‐being Of the Limits to the Authority of Society over the Individual Applications.

The twentieth century saw a vigorous debate over the nature of rights. Will theorists argued that the function of rights is to allocate domains of freedom. Interest theorists portrayed rights as defenders of well-being. Each side declared its conceptual analysis to be closer to an ordinary understanding of what rights there are, and to an ordinary understand- ing of what rights do for rightholders. Neither side could win a decisive victory, and the debate ended in a standoff.

BackgroundCurrent guidelines do not clearly outline when assent should be attained from paediatric research participants, nor do they detail the necessary elements of the assent process. This stems from the fact that the fundamental justification behind the concept of assent is misunderstood. In this paper, we critically assess three widespread ethical arguments used for assent: children’s rights, the best interests of the child, and respect for a child’s developing autonomy. We then outline a newly-developed two-fold justification for the assent process: (...) respect for the parent’s pedagogical role in teaching their child to become an autonomous being and respect for the child’s moral worth.DiscussionWe argue that the ethical grounding for the involvement of young children in medical decision-making does not stem from children’s rights, the principle of best interests, or respect for developing autonomy. An alternative strategy is to examine the original motivation to engage with the child. In paediatric settings there are two obligations on the researcher: an obligation to the parents who are responsible for determining when and under what circumstances the child develops his capacity for autonomy and reasoning, and an obligation to the child himself. There is an important distinction between respecting a decision and encouraging a decision. This paper illustrates that the process of assent is an important way in which respect for the child as an individual can be demonstrated, however, the value lies not in the child’s response but the fact that his views were solicited in the first place.SummaryThis paper demonstrates that the common justifications for the process of assent are incomplete. Assent should be understood as playing a pedagogical role for the child, helping to teach him how specific decisions are made and therefore helping him to become a better decision-maker. How the researcher engages with the child supports his obligation to the child’s parents, yet why the researcher engages with the child stems from the child’s moral worth. Treating a child as having moral worth need not mean doing what they say but it may mean listening, considering, engaging or involving them in the decision. (shrink)

Deep brain stimulation (DBS) is frequently described as a ‘reversible’ medical treatment, and the reversibility of DBS is often cited as an important reason for preferring it to brain lesioning procedures as a last resort treatment modality for patients suffering from treatment-refractory conditions. Despite its widespread acceptance, the claim that DBS is reversible has recently come under attack. Critics have pointed out that data are beginning to suggest that there can be non-stimulation-dependent effects of DBS. Furthermore, we lack long-term data (...) about other potential irreversible effects of neuromodulation. This has considerable normative implications for comparisons of DBS and brain lesioning procedures. Indeed, Devan Stahl and colleagues have recently argued that psychiatric DBS should be subject to the same legal safeguards as other forms of psychosurgery, supporting their position by forcibly criticising the claim that DBS is reversible. In this paper, I respond to these criticisms by first clarifying the descriptive and evaluative elements of the reversibility claim that supporters of DBS might invoke, and the different senses of ‘reversibility’ that we might employ in discussing the effects of medical procedures. I go on to suggest that it is possible to defend a nuanced version of the reversibility claim. To do so, I explain how DBS has some effects that are stimulation dependent in the short term, and argue that these effects can have significant normative implications for patient well-being and autonomy. I conclude that we should not abandon a nuanced version of the reversibility claim in the DBS debate. (shrink)

Adolescents present a puzzle. There are foundational unclarities about how they should be regarded as decision-makers. Although superficially adolescents may appear to have mature decisional capacity, their decision-making is in many ways unlike that of adults. Despite this seemingly obvious fact, a concern for the claims of autonomy has led to the development of the legal doctrine of the mature minor. This legal construct considers adolescents, as far as possible, as equivalent to adults for the purpose of medical decision-making. The (...) movement to support independent decision-making by adolescents through providing information to them and securing their consent apart from their parents is encouraged by those legal understandings that hold that unemancipated minors should generally be considered as possessing effective decisional capacity. Such legal structures, however, do not adequately take account of the wide variations in adolescent capacities, the immaturity of most adolescent decision-makers, or the important contributions made by parents to the development of their adolescents through parental partnering in the adolescent’s decision-making. The data available indicate that in general adolescents should be regarded as apprentice decision-makers who should make decisions in collaboration with their parents until at least the age of 18. Steps should not be taken pre-emptively to isolate adolescents from the guidance of their parents. As a general rule, what Piker has referred to as “collaborative paternalism” appears most likely both to protect adolescents from their own untoward choices, while also very importantly helping them with parental guidance to develop into mature decision-makers with the capacity to make medical choices on their own. (shrink)

Dystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deep brain stimulation has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS to children with (...) refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand. (shrink)

It is common to cite the child’s “right to an open future” in discussions of how parents and the state may and should treat children. However, the right to an open future can only be useful in these discussions if we have some method for deriving the content of the right. In the paper in which he introduces the right to an open future Joel Feinberg seems to provide such a method: he derives the right from the content of adult (...) autonomy rights. In this paper I argue that his argument fails. If it is to give us guidance about the content of the child’s right to an open future, then the right should be interpreted as a right to a maximally open future. But this strong interpretation is unjustified: the arguments that can be found in Feinberg in favor of the right are invalid, and, in any case, this interpretation has implausible implications. A moderate interpretation of the right to an open future, according to which children have a right to acquire some reasonable range of skills and options, is more plausible. However, if a moderate interpretation is correct, there is not only no argument in Feinberg to support it, there is also no method for deriving the content of the right. Without such a method we have to bring in other moral considerations in order to work out the limits on parental discretion and what children are owed. The right to an open future then does no normative work. (shrink)

This article considers the question of how much weight the infringement of children's right to bodily integrity should be given compared with competing considerations. It utilises the example of circumcision to explore this question, taking as given this practice's opponents' view of circumcision's harmfulness. The article argues that the child's claim against being subjected to circumcision is neither a mere interest nor a right so strong that it trumps all competing interests. Instead, it is a right of moderate strength. Indeed, (...) even the aggregate strength of children's rights against the practice of circumcision as a whole is not so weighty so as to always trump competing interests. The harms are not sufficiently serious to justify such a status. And the expressive wrongs associated with non-negligently benevolent harming are much less serious than those associated with intentional harming. The debate over banning circumcision thus cannot be conducted only in terms of competing rights. Competing interests, such as those that would be set back by the departure of religious citizens, should be considered as well and might plausibly justify allowing even a rights-infringing practice to continue. (shrink)

This article considers two competing types of conceptions of the pre-autonomous child’s right to bodily integrity. The first, which I call encroachment conceptions, holds that any physically serious bodily encroachment infringes on the child’s right to bodily integrity. The second, which I call best-interests conceptions, holds that the child’s right to bodily integrity is infringed just in case the child is subjected to a bodily encroachment that substantially deviates from what is in the child’s best interests. I argue in this (...) article that best-interests conceptions are more plausible than encroachment conceptions. They have more attractive implications regarding the permissibility of interventions in children’s bodies that are beneficial for the child but are not medically necessary. They are better able to explain the moral distinction between cases in which an encroachment on a child’s body is needed to benefit that child and cases in which an encroachment on one child’s body is needed to benefit another. Finally, best-interests conceptions are more consonant than encroachment conceptions with our understanding of adults’ right to bodily integrity. (shrink)

History's judgment on the success of bioethics will not depend solely on the conceptual creativity and innovation in the field at the level of ethical and political theory, but this intellectual work is not insignificant. One important new development is what I shall refer to as the relational turn in bioethics. This development represents a renewed emphasis on the ideographic approach, which interprets the meaning of right and wrong in human actions as they are inscribed in social and cultural practices (...) and in structures of lived meaning and interdependence; in an ideographic approach, the task of bioethics is to bring practice into theory, not the other way around. The relational turn in bioethics may profoundly affect the critical questions that the field asks and the ethical guidance it offers society, politics, and policy. The relational turn provides a way of correcting the excessive atomism of many individualistic perspectives that have been, and continue to be, influential in bioethics. Nonetheless, I would argue that most of the work reflecting the relational turn remains distinctively liberal in its respect for the ethical significance of the human individual. It moves away from individualism, but not from the value of individuality.In this review essay, I shall focus on how the relational turn has manifested itself in work on core concepts in bioethics, especially liberty and autonomy. Following a general review, I conclude with a brief consideration of two important recent books in this area: Jennifer Nedelsky's Law's Relations and Rachel Haliburton's Autonomy and the Situated Self. (shrink)

Decision-making capacityDecision-making capacity for pediatric patients can be difficult to determine and is influenced by a myriad of developmental considerations. This chapter begins with a discussion concerning the nature of decision-makingDecision-making and what constitutes competency. The “rule of sevensRule of sevens” frameworkFramework is then used to explicate pertinent developmental milestonesMilestones for children, dividing pediatric developmentDevelopment into 0–7, 7–14, and 14+ years of age. In particular, the authors highlight the most important cognitiveCognitive, socialSocial, andSocial emotionalemotionalEmotional considerations in each of these periods (...) and how they pertain to a child’s ability to make important medical decisions. (shrink)