Theoretical Medicine and Bioethics最新文献

Philosophers of medicine have formulated different accounts of the concept of disease. Which concept of disease one assumes has implications for what conditions count as diseases and, by extension, who may be regarded as having a disease (disease judgements) and for who may be accorded the social privileges and personal responsibilities associated with being sick (sickness judgements). In this article, we consider an ideal diagnostic test for coronavirus disease 2019 (COVID-19) infection with respect to four groups of people-positive and asymptomatic; positive and symptomatic; negative; and untested-and show how different concepts of disease impact on the disease and sickness judgements for these groups. The suggestion is that sickness judgements and social measures akin to those experienced during the current COVID-19 outbreak presuppose a concept of disease containing social (risk of) harm as a component. We indicate the problems that arise when adopting this kind of disease concept beyond a state of emergency.

In this paper, I argue that disabled people have a right to assistive technology (AT), but this right cannot be grounded simply in a broader right to health care or in a more comprehensive view like the capabilities approach to justice. Both of these options are plagued by issues that I refer to as the problem of constriction, where the theory does not justify enough of the AT that disabled people should have access to, and the problem of overextension, where the theory cannot adequately identify an upper limit on the AT that people have a right to. As an alternative to these justificatory frameworks, I argue that disabled people are owed access to AT at the expense of nondisabled people as a matter of compensatory justice. That is, I defend the position that disabled people are owed AT as part of due compensation for the harms they experience from being disadvantaged by society's dominant cooperative scheme and the violation of their right to equality of opportunity that such disadvantage entails. I also propose a method for identifying an upper limit to what this right to AT requires. In this way, I argue that compensatory justice avoids both the problem of constriction and the problem of overextension.

In this paper, we explore three separate questions that are relevant to assessing the prudential value of life in infants with severe life-limiting illness. First, what is the value or disvalue of a short life? Is it in the interests of a child to save her life if she will nevertheless die in infancy or very early childhood? Second, how does profound cognitive impairment affect the balance of positives and negatives in a child's future life? Third, if the life of a child with life-limiting illness is prolonged, how much suffering will she experience and can any of it be alleviated? Is there a risk that negative experiences for such a child (suffering) will remain despite the provision of palliative care? We argue that both the subjective and objective components of well-being for children could be greatly reduced if they are anticipated to have a short life that is affected by profound cognitive impairment. This does not mean that their overall well-being will be negative, but rather that there may be a higher risk of negative overall well-being if they are expected to experience pain, discomfort, or distress. Furthermore, we point to some of the practical limitations of therapies aimed at relieving suffering, such that there is a risk that suffering will go partially or completely unrelieved. Taken together, these considerations imply that some life-prolonging treatments are not in the best interests of infants with severe life-limiting illness.

Suffering is a ubiquitous yet elusive concept in health care. In a field devoted to the pursuit of objective data, suffering is a phenomenon with deep ties to subjective experience, moral values, and cultural norms. Suffering's tie to subjective experience makes it challenging to discern and respond to the suffering of others. In particular, the question of whether a child with profound neurocognitive disabilities can suffer has generated a robust discourse, rooted in philosophical conceptualizations of personhood as well as the academic and experiential expertise of practiced health-care professionals. The issue remains unresolved because it is difficult, perhaps impossible, to ever truly know an infant's lived experience. But what if this is not the best question? What if instead of asking "can this infant suffer?" the discourse is broadened to ask "is there suffering here?" This latter question demands attention to patients' subjective experiences of suffering, but also to the web of relationships that envelop them. Without losing sight of the importance of patients' experiences, consideration of their relationships may elucidate the presence of suffering when the patients themselves are unable to provide the same clarity. In this essay, care ethics frames an examination of how suffering manifests in the loving and caring relationships that surround an infant with profound neurocognitive disabilities, changing those relationships and affecting the individuals within them. Exploring suffering through these relationships may offer clarity on the presence and content of suffering for infants with profound cognitive disabilities, in turn offering moral guidance for responding to suffering and supporting flourishing in this context.

In this paper I aim to show why pediatric suffering must be understood as a judgment or evaluation, rather than a mental state. To accomplish this task, first I analyze the various ways that the label of suffering is used in pediatric practice. Out of this analysis emerge what I call the twin poles of pediatric suffering. At one pole sits the belief that infants and children with severe cognitive impairment cannot suffer because they are nonverbal or lack subjective life experience. At the other pole exists the idea that once child suffering reaches some threshold it is ethical to eliminate the sufferer. Concerningly, at both poles, any particular child vanishes from view. Second, in an attempt to identify a theory of suffering inclusive of children, I examine two prominent so-called experiential accounts of suffering. I find them both wanting on account of their absurd entailments and their flawed assumptions regarding the subjective experiences of people who cannot communicate expressively. Finally, I extend arguments found in Alastair MacIntyre's Dependent Rational Animals to argue that child suffering can be understood only as a set of absences-absences of conditions such as love, warmth, and freedom from pain. An evaluation of these absences reveals the exquisite dependency of children. It also discloses why pediatric suffering is necessarily a social and political event. Unlike adults, children will never be either the authors or the mitigators of their own suffering. Rather, children must rely wholly on others in order to resist suffering, grow, and flourish.

Elselijn Kingma maintains that Christopher Boorse and other naturalists in the philosophy of medicine cannot deliver the value-free account of disease that they promise. Even if disease is understood as dysfunction and that notion can be applied in a value-free manner, values still manifest themselves in the justification for picking one particular operationalization of dysfunction over a number of competing alternatives. Disease determinations depend upon comparisons within a reference class vis-à-vis reaching organism goals. Boorse considers reference classes for a species to consist in the properties of age and sex and organism goals to comprise survival and reproduction. Kingma suggests that naturalists are influenced by value judgments and may rely upon implicit assumptions about disease in their choice of reference classes and goals to determine which conditions are diseased. I argue that she is wrong to claim that these choices cannot be defended without arguing in a circular manner or making certain arbitrary or value-driven judgments.

Every day around the country, patients are discharged from hospitals without difficulty, as the interests of the hospital and the patient tend to align: both the hospital and the patient want the patient to leave and go to a setting that will promote the patient's continued recovery. In some cases, however, this usually routine process does not go quite as smoothly. Patients may not want to leave the hospital, or they may insist on an unsafe discharge plan. In other cases, there may simply be no good place for the patient to go. These complex hospital discharge situations often involve ethical, legal, financial, and practical considerations, but the ethical issues inherent in these dilemmas have received only sporadic attention from clinical ethicists at best, leaving patients, providers, administrators, and caregivers unsure about what to do. When the ethical issues are in fact brought to light, analysis usually proceeds based on a consideration of the principles of autonomy, beneficence, nonmaleficence, and justice. However, principled analysis often fails to present patients and providers with a satisfactory solution, as the principles inevitably conflict (for example, when the patient's autonomous desire to remain in the hospital conflicts with the principles of beneficence and justice). In this paper, I argue that difficult discharges are ethical dilemmas worthy of scholarly attention that goes beyond principlism, and I argue that providers and those involved in discharge planning ought to cultivate what philosopher Alasdair MacIntyre calls "virtues of acknowledged dependence" in order to care for these patients and their families. I first trace the current conversation about difficult discharge and show that the principled approach to resolving discharge dilemmas is not sufficient. I then argue that a new approach is needed, and to that end, I offer practical ways in which MacIntyre's account of the virtues of acknowledged dependence may help patients, providers, and family members to navigate issues of difficult discharge.