BackgroundClinical trials should be as inclusive as possible to facilitate equitable access to research and better reflect the population towards which any intervention is aimed. Informed by the UK’s National Institute for Health and Care Research (NIHR) Innovations in Clinical Trial Design and Delivery for the Under-served (INCLUDE) guidance, we audited oncology trials conducted by the Clinical Trials and Statistics Unit at The Institute of Cancer Research, London (ICR-CTSU) to identify whether essential documents were overtly excluding any groups and whether (...) sufficient data were collected to assess diversity of trial participants from groups suggested by INCLUDE as under-served by research in the UK.MethodsThirty cancer clinical trials managed by ICR-CTSU and approved between 2011–2021 were audited. The first ethics approved version of each trial’s protocol, patient information sheet, and patient completed questionnaire, together with the first case report forms (CRFs) version were reviewed. A range of items aligned with the INCLUDE under-served groups were assessed, including age, sex and gender, socio-economic and health factors. The scope did not cover trial processes in participating hospitals.ResultsData relating to participants’ age, ethnic group and health status were well collected and no upper age limit was specified in any trials’ eligibility criteria. 23/30 (77%) information sheets used at least one gendered term to address patients. Most CRFs did not specify whether they were collecting sex or gender and only included male or female categories. The median reading age for information sheets was 15–16 years (IQR: 14–15 – 16–17). Socio-economic factors were not routinely collected and not commonly mentioned in trial protocols.ConclusionsNo systemic issues were identified in protocols which would explicitly prevent any under-served group from participating. Areas for improvement include reducing use of gendered words and improving readability of patient information. The challenge of fully assessing adequate inclusion of under-served populations remains, as socio-economic factors are not routinely collected because they fall beyond the data generally required for protocol-specified trial endpoint assessments. This audit has highlighted the need to agree and standardise demographic data collection to permit adequate monitoring of the under-served groups identified by the NIHR. (shrink)

In Northern Canada, Indigenous mixed economies persist alongside and in resistance to capital accumulation. The day-to-day sites and processes of colonial struggle, and, in particular, their gendered nature, are too often ignored. This piece takes an anti-colonial materialist approach to the multiple labours of Indigenous women in Canada, arguing that their social-reproductive labour is a primary site of struggle: a site of violent capitalist accumulation and persistent decolonising resistance. In making this argument, this piece draws on social-reproduction feminism, and anti-racist, (...) Indigenous and anti-colonial feminism, asking what it means to take an anti-colonial approach to social-reproduction feminism. It presents an expanded conception of production that encompasses not just the dialectic of capitalist production and reproduction, but also non-capitalist, subsistence production. An anti-colonial approach to social-reproduction feminism challenges one to think through questions of non-capitalist labour and the way different forms of labour persist relationally, reproducing and resisting capitalist modes of production. (shrink)

While the definitions employed by different governmental agencies and scientific societies differ somewhat, the term “nanotechnology” is generally understood to refer to the manufacturing, characterization, and use of man-made devices with dimensions on the order of 1-100 nanometers. Devices that comprise a fundamental functional element that is nanotechnological are also frequently comprised within nanotechnology, as are manufactured objects with dimensions less than one micrometer. The differences in definition lead to occasional paradoxes, such as the fact that the most widely used (...) nanodrug is labeled a “nanopharmaceutical” by governments of European countries, Canada, and Australia, but it is not a nanotechnology for the U.S. Food and Drug Administration. It is also common in scientific domains to restrict the term “nanotechnology” to objects that possess special, “emerging” properties that only arise because of their nanoscale dimension. (shrink)

ABSTRACTPrior research on attention bias in anxious youth, often utilising a visual dot probe task, has yielded inconsistent findings, which may be due to how bias is assessed and/or variability in the phenomenon. The present study utilises eye gaze tracking to assess attention bias in socially anxious adolescents, and explores several methodological and within-subject factors that may contribute to variability in attention bias. Attention bias to threat was measured in forty-two treatment-seeking adolescents diagnosed with Social Anxiety Disorder. Bias scores toward (...) emotional stimuli and bias scores away from emotional stimuli were explored. Bias scores changed between vigilance and avoidance within individuals and over the course of stimulus presentation. These differences were not associated with participant characteristics nor with self-reported social anxiety symptoms. However, clinician rated severity of social anxiety, explained a signific... (shrink)

Impaired control over drug use is a defining characteristic of addiction in the major diagnostic systems. However there is significant debate about the extent of this impairment. This qualitative study examines the extent to which leading Australian addiction neuroscientists and clinicians believe that addicted individuals have control over their drug use and are responsible for their behaviour. One hour semi-structured interviews were conducted during 2009 and 2010 with 31 Australian addiction neuroscientists and clinicians (10 females and 21 males; 16 with (...) clinical experience and 15 with no clinical experience). Although many addiction neuroscientists and clinicians described uncontrolled or compulsive drug use as characteristic of addiction, most were ambivalent about whether or not addicted people could be said to have no control of their drug use. Most believed that addicted individuals have fluctuating levels of impaired control over their drug use but they nonetheless believed that addicted persons were responsible for their behaviour, including criminal behaviour engaged in to fund their drug use. Addiction was not seen as exculpating criminal behaviour but as a mitigating factor. (shrink)

Nanomedicine is yielding new and improved treatments and diagnostics for a range of diseases and disorders. Nanomedicine applications incorporate materials and components with nanoscale dimensions where novel physiochemical properties emerge as a result of size-dependent phenomena and high surface-to-mass ratio. Nanotherapeutics and in vivo nanodiagnostics are a subset of nanomedicine products that enter the human body. These include drugs, biological products, implantable medical devices, and combination products that are designed to function in the body in ways unachievable at larger scales. (...) Nanotherapeutics andin vivonanodiagnostics incorporate materials that are engineered at the nanoscale to express novel properties that are medicinally useful. These nanomedicine applications can also contain nanomaterials that are biologically active, producing interactions that depend on biological triggers. Examples include nanoscale formulations of insoluble drugs to improve bioavailability and pharmacokinetics, drugs encapsulated in hollow nanoparticles with the ability to target and cross cellular and tissue membranes and to release their payload at a specific time or location, imaging agents that demonstrate novel optical properties to aid in locating micrometastases, and antimicrobial and drug-eluting components or coatings of implantable medical devices such as stents. (shrink)

Addiction is increasingly described as a “chronic and relapsing brain disease”. The potential impact of the brain disease model on the treatment of addiction or addicted individuals’ treatment behaviour remains uncertain. We conducted a qualitative study to examine: (i) the extent to which leading Australian addiction neuroscientists and clinicians accept the brain disease view of addiction; and (ii) their views on the likely impacts of this view on addicted individuals’ beliefs and behaviour. Thirty-one Australian addiction neuroscientists and clinicians (10 females (...) and 21 males; 16 with clinical experience and 15 with no clinical experience) took part in 1 h semi-structured interviews. Most addiction neuroscientists and clinicians did not uncritically support the use of brain disease model of addiction. Most were cautious about the potential for adverse impacts on individuals’ recovery and motivation to enter treatment. While some recognised the possibility that the brain disease model of addiction may provide a rationale for addicted persons to seek treatment and motivate behaviour change, Australian addiction neuroscientist and clinicians do not assume that messages about “diseased brains” will always lead to increased treatment-seeking and reduced drug use. Research is needed on how neuroscience research could be used in ways that optimise positive outcomes for addicted persons. (shrink)

FOSTER J, CHIANG F, HILLARD RC, HALL P and HEATH A. Nursing Inquiry 2010; 17: 309–316 Team process in community‐based participatory research on maternity care in the Dominican RepublicA cross‐cultural team consisting of US trained academic midwife researchers, Dominican nurses, and Dominican community leaders have partnered in this international nursing and midwifery community‐based participatory research (CBPR) project in the Dominican Republic to understand the community experience with publicly funded maternity services. The purpose of the study was to understand community (...) perceptions of maternity services. This article highlights the activities that the research team carried out during each phase of the research process, and how they established team identity, team trust, and team efficacy. This research has created a platform for new avenues for health providers and community to partner to improve maternal‐newborn care. Community‐based participatory research is one way forward to address the past and present inequities constitutive of global health disparities. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:The Invention of Greek Ethnography from Homer to Herodotusby Joseph E. SkinnerRebecca F. KennedyJ osephE. S kinner. The Invention of Greek Ethnography from Homer to Herodotus. Greeks Overseas. Oxford: Oxford University Press, 2012. xii + 343 pp. Numerous black-and-white figs. Cloth, $85.In his welcome book on the invention of ethnography, Skinner challenges the focus in mainstream scholarship on the Greek prose genre that was first defined by Jacoby (...) in his influential Die Fragmente der griechischen Historiker(discussed in detail, 30–34) and on a notion that the “Greekness” the genre embodies was [End Page 287]supposedly invented in the fifth century as a response to the Persian wars. Skinner also advocates a break from the structuralist frameworks favored by scholars such as F. Hartog and E. Hall. Thus, the book has two distinct focuses. First, Skinner seeks to demonstrate that the origins of the prose genre can be found in other literary genres, sub-literary engagements, and material artifacts that should be considered as part of the “thought-world from which the early prose accounts emerged” (17). Second, Skinner shows that structuralist binaries are not the best method for understanding ethnographic thinking and frames his study instead with the discourse theories found in the works of historian J. Clifford and anthropologist/sociologist P. Bourdieu that emphasize “practice” and process. Skinner argues that the genre of Greek ethnography is not synonymous with the practice of Greek identity nor can any functional, homogenous Greek identity claim to be embedded within the genre (18). Rather, he emphasizes the “ethnographic concerns” of the Greeks and attempts to contextualize the emergence of the prose genre by exploring evidence of ethnographic “practice” in the material of everyday life. Ethnographic thought is further defined as positioning in relation to both non-Greeks and other Greeks. Although the title of the book suggests that the timeframe of the study includes evidence from Homer down to the time of Herodotus’ Histories(ca. 430 b.c.e.), most of the evidence he musters comes from the archaic period with occasional recourse to Pindar and the historical fragments of the post–Persian war period. This fits in with a secondary aim of the book to show that the Persian wars did not serve as the impetus for ethnographic thinking or for the emergence of a notion of “Greekness,” a position emphasized most vigorously by J. Hall.Chapter 1 is a long and dense explanation of Skinner’s theoretical approach and the debates among which Skinner situates his study. Despite a number of scholarly efforts over the last decade or so in rethinking identity and ethnicity in antiquity, it is still necessary to combat the ghosts of Jacoby and the structuralists, and Skinner musters a theoretically equipped army for the battle. He finds inherently problematic Jacoby’s “invention” of genres and our adherence to them (a legacy from the earlier academic enterprise, especially in Germany, of prioritizing and ranking ancient cultures based on their “firsts”). Structuralist views are represented by Edith Hall’s Inventing the Barbarian(Oxford 1989), one of the most influential voices in the study of ancient ethnicity. Although she is prominent throughout the book, Skinner ironically never addresses the fact that Hall’s own evidence is the performative, public practice of Athenian drama. Hall herself, although a structuralist, reflects in choice of evidence the type of discursive practice Skinner himself wishes to invoke (in fact, he entirely excludes drama from his evidence). Skinner’s theoretical apparatus is complex and rarely appears explicitly in later chapters (except in the conclusion).In “Populating the Imaginaire” (chap. 2), Skinner catalogues some foreign and/or mythical peoples whom the Greeks deployed in their texts and art as part of their process of self-identification. The peoples discussed are, as Skinner admits, selective, but I could not find a principle behind the selection. The discussion of the Cyclopes is restricted to Homer, and the Arimaspians make a brief appearance. [End Page 288]The Scythians, Amazons, Lydians, Egyptians, and Ethiopians receive extensive treatment in text and iconography (although his presentation of Archaic literary representations of Thrace is slightly abbreviated). Also included are the Pelasgians and peoples of... (shrink)

The view that social kinds (e.g., money, migrant, marriage) are mind-dependent is a prominent one in the social ontology literature. However, in addition to the claim that social kinds are mind-dependent, it is often asserted that social kinds are not real because they are mind-dependent. Call this view social kind anti-realism. To defend their view, social kind anti-realists must accomplish two tasks. First, they must identify a dependence relation that obtains between social kinds and our mental states. Call this the (...) Dependence Task. Second, they must show that social kinds are not real because they are mind-dependent. Call this the Anti-Realist Task. In this paper, I consider several different ways of defining the relation that is supposed to obtain between social kinds and our mental states. With respect to each relation, I argue that either it fails to accomplish the Dependence Task, or it fails to accomplish the Anti-Realist Task. As such, anyone who wishes to defend social kind anti-realism must provide an alternative explanation of how social kinds depend on our mental states in a way that impugns their reality. In the absence of such an explanation, there is no reason to endorse social kind anti-realism. (shrink)

Ernest Gellner was a multilingual polymath who set the agenda in the study of nationalism and the sociology of Islam for an entire generation of academics and students. This definitive biography follows his trajectory from his early years in Prague, Paris and England to international success as a philosopher and public intellectual. Known both for his highly integrated philosophy of modernity and for combining a respect for nationalism with an appreciation for science, Gellner was passionate in his defence of reason (...) against every for of relativism. (shrink)

The article proposes a framework for the analysis of identity as produced in linguistic interaction, based on the following principles: identity is the product rather than the source of linguistic and other semiotic practices and therefore is a social and cultural rather than primarily internal psychological phenomenon; identities encompass macro-level demographic categories, temporary and interactionally specific stances and participant roles, and local, ethnographically emergent cultural positions; identities may be linguistically indexed through labels, implicatures, stances, styles, or linguistic structures and systems; (...) identities are relationally constructed through several, often overlapping, aspects of the relationship between self and other, including similarity/difference, genuineness/artifice and authority/ delegitimacy; and identity may be in part intentional, in part habitual and less than fully conscious, in part an outcome of interactional negotiation, in part a construct of others’ perceptions and representations, and in part an outcome of larger ideological processes and structures. The principles are illustrated through examination of a variety of linguistic interactions. (shrink)

The 'Gamer's Dilemma' is the problem of why some actions occurring in video game contexts seem to have similar, albeit attenuated, kinds of moral significance to their real-world equivalents, while others do not. In this paper, I argue that much of the confusion in the literature on this problem is not ethical but metaphysical. The Gamer's Dilemma depends on a particular theory of the virtual, which I call 'inflationary', according to which virtual worlds are a metaphysical novelty generated almost exclusively (...) by video games. Actions performed in virtual worlds really belong to the kinds of action they appear to—'virtual murder' is a kind of murder. Inflationary theories are contrasted with 'deflationary' theories which, in effect, consider video games purely as systems for generating images, and thus the gamer as a consumer of media images. Inflationary theories struggle to explain why video games produce this unique metaphysical novelty; deflationary theories fail to do justice to the intuition that there is some significant difference between the gamer and the consumer of other media forms. In place of either, I sketch a theory of the gamer as performer, primarily by analogy with stage and cinema actors, which I suggest captures more of the moral complexity of the gamer's action. (shrink)

In this essay, I consider how the theological virtue of hope might be practiced. I will first explain Thomas Aquinas’s account of this virtue, including its structural relation to the passion of hope, its opposing vices, and its relationship to the friendship of charity. Then, using narrative and character analysis from the film The Shawshank Redemption, I examine a range of hopeful and proto-hopeful practices concerning both the goods one hopes for and the power one relies on to attain those (...) goods. In particular, I show how the film’s picture of the role friends and friendship play in catalyzing hope is a compelling metaphor for Christian hope’s reliance on God. (shrink)

Contemporary culture trivializes the "seven deadly sins," or vices, as if they have no serious moral or spiritual implications. Glittering Vices clears this misconception by exploring the traditional meanings of gluttony, sloth, lust, and others. It offers a brief history of how the vices were compiled and an eye opening explication of how each sin manifests itself in various destructive behaviors. Readers gain practical understanding of how the vices shape our culture today and how to correctly identify and eliminate the (...) deeply rooted patterns of sin that are work in their own lives. This accessible book is essential for any reader interested in spiritual disciplines and character formation. Excerpt Very simply, a virtue (or vice) is acquired through practice repeated activity that increases our proficiency at the activity and gradually forms our character. . . . We often need external incentives and sanctions to get us through the initial stages of the process, when our old, entrenched desires still pull us toward the opposite behavior. But with encouragement, discipline, and often a role model or mentor, practice can make things feel more natural and enjoyable as we gradually develop the internal values and desires corresponding to our outward behavior. Virtue often develops, that is, from the outside in. This is why, when we want to reform our character from vice to virtue, we often need to practice and persevere in regular spiritual disciplines and formational practices for a lengthy period of time. (shrink)

The climate crisis is beset by depoliticization. Couched as an issue that experts must solve through technological or technocratic knowledge, discussion about how to address environmental degradation is not amenable to democratic action or dissensus. This paper argues that approaching climate change through a human rights framework risks reinscribing such depoliticization and that this is politically hazardous. Human rights discourse can impede the demos’ exercise of power, obscure exercises of hegemony, and, via a fixed notion of progress, discourage normative contestation. (...) This discourse’s depoliticizing potential is further attested to by the debate over human rights’ relationship to the depoliticizing ideology of neoliberalism. Moreover, beyond the language of human rights, the larger legal phenomena of judicialization and juridification may further contribute to depoliticization. Depoliticization is risky because it can provoke politicizing backlashes likely to issue, in the case of climate change, in antidemocratically nationalistic and authoritarian responses to the environmental emergency. (shrink)

If a child’s well-being is at risk of considerable harm within their own family, state institutions usually intervene. In severe cases, the parents’ right to rear is suspended. Cases of risk assessment and potential state intervention are decided within a conflict between parents’ rights and claims of children for protection. There is, we argue, a standard model of normative assessment underlying these decisions: It rests on premises rooted in classic liberal political philosophy, which is prevalent in many Western societies, such (...) as a strong commitment to individualism, a separation of private and public, or a conceptualization of children as lacking the status of full right holders. We proceed in three steps. Based on cases in social work and child welfare offices, firstly, the article proposes an inductive approach to describe the problem. Second, we point out the most critical problems and shortcomings of the standard model. On this basis, third, we develop an alternative, pragmatistic perspective on child welfare and state intervention. It argues that child welfare must be understood more broadly as a societal concern than merely as a matter of the legitimacy of state intervention. A practice-oriented section follows to show what conclusions can be drawn from our alternative model. (shrink)

Organisations increasingly use digital nudges to influence their workforces’ behaviour without coercion or incentives. This can expose employees to arbitrary domination by infringing on their autonomy through manipulation and indoctrination. Nudges might furthermore give rise to the phenomenon of “organised immaturity.” Adopting a balanced approach between overly optimistic and dystopian standpoints, I propose a framework for determining the moral permissibility of digital nudging in the workplace. In this regard, I argue that not only should organisations provide pre-discursive justification of nudges (...) but they should also ensure that employees can challenge their implementation whenever necessary through legitimation procedures. Building on Rainer Forst’s concept of the right to justification, this article offers a way to combine contract- and deliberation-based theories for addressing questions in business ethics. I further introduce the concept of meta-autonomy as a capacity that employees can acquire to counter threats of arbitrary domination and to mitigate organised immaturity. (shrink)

David Chalmers supports his contention that there is a possible world populated by our zombie twins by arguing for the assumption that conceivability entails possibility. But, I argue, the modal epistemology he sets forth, ‘modal rationalism,’ ignores the problem of incompleteness and relies on an idealized notion of conceivability. As a consequence, this epistemology can’t justify our quotidian judgments of possibility, let alone those judgments that concern the mind/body connection. Working from the analogy that the imagination is to the possible (...) as perception is to the actual, I set forth a competing epistemology, ‘modal empiricism.’ This epistemology survives the incompleteness objection and allows some of our everyday modal judgments to be justified. But this epistemology can’t justify the claim that Zombie World is possible, which leaves Chalmers’s property dualism without the support it needs. (shrink)

En este ensayo se examina de manera crítica el desarrollo de la filosofía analítica y, en particular, de la filosofía analítica latinoamericana. Se propone que esta última adopte un giro político y uno pedagógico con el fin de recuperar su espíritu original y reconectarse con la tradición intelectual latinoamericana. This essay is a critical examination of the development of analytic philosophy and, in particular, of Latin American analytic philosophy. It is argued that the latter ought to adopt a political and (...) pedagogical turn in order to recover its original spirit and to be reconnected to Latin American intelectual tradition. (shrink)

1. A World of Difference: Travel Narratives and the Inscription of Culture -- 2. Fair Texts/Dark Ladies: Renaissance Lyric and the Poetics of Color -- 3. "Commerce and Intercourse": Dramas of Alliance and Trade -- 4. The Daughters of Eve and the Children of Ham: Race and the English Woman Writer -- 5. "An Object in the Midst of Other Objects": Race, Gender, Material Culture -- Epilogue: Oil "Race," Black Feminism, and White Supremacy -- Appendix: Poems of Blackness.

Mature representations of number are built on a core system of numerical representation that connects to spatial representations in the form of a ‘mental number line’. The core number system is functional in early infancy, but little is known about the origins of the mapping of numbers onto space. Here we show that preverbal infants transfer the discrimination of an ordered series of numerosities to the discrimination of an ordered series of line lengths. Moreover, infants construct relationships between individual numbers (...) and line lengths that vary positively, but not between numbers and lengths that vary inversely. These findings provide evidence for an early developing predisposition to relate representations of numerical magnitude and spatial length. A central foundation of mathematics, science and technology therefore emerges prior to experience with language, symbol systems, or measurement devices. (shrink)

Drawing on theoretical work on humans’ adaptive capacity, we propose that supervisors’ perception of top management’s high bottom-line mentality (BLM) has a dysfunctional effect on their ethical leadership practices. Specifically, we suggest that these perceptions hinder supervisors’ empathy, which eventuates in less ethical leadership practices. We also investigate, in a first-stage moderated mediation model, how supervisors high in trait mindfulness are resistant to the ill effects of perceptions of top management’s high BLM. Supervisors high (versus low) in this trait are (...) less likely to respond to perceptions of top management’s high BLM with reduced empathy that then hinders ethical leadership. Results from a multi-wave, multi-source sample of working adults from the Chinese high technology industry provide general support for our theoretical model. Theoretical and practical implications are discussed. (shrink)

In this chapter, DeYoung explores the vice of sloth and how its traditional conception differs from popular thought. Pulling from the tradition of the Desert Fathers, Augustine, and Aquinas, DeYoung reconnects sloth to its spiritual roots to see how this vice detracts from love.

In the article “On Avoiding Deep Dementia,” Norman Cantor defends a position that I suspect many readers share. In my years writing and speaking on advance directives and dementia, I've found that most people support one of two positions. They are convinced either that advance choices should control the treatment dementia patients receive or that the welfare of a person with dementia should sometimes take priority over earlier choices. As Cantor points out, I support the second position.I agree with several (...) of Cantor's arguments. Where Cantor and I part ways is over the degree of control that advance directives should exert over the care of persons with moderate dementia. Although I don't welcome the prospect of living with dementia, I believe that people with the condition should be represented in the debate over treatment standards. It's not surprising that many, perhaps most, people unaffected by dementia think that their preferences should control the care they would receive as dementia patients. But people taking this position are neglecting the concerns and interests they may have as dementia patients. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:“Please Help Me”Rebecca L. VolpeTwo–year–old Jay was born prematurely at 26 weeks gestation, addicted to opiates. After several months in the Neonatal ICU, he was sent home, ventilator–dependent but with a high likelihood of survival and a low chance of severe, lasting disability. When Jay was 1½, he had a cardiopulmonary arrest at home. The parents of children who are on ventilators at home receive extensive education and (...) training about how to respond to something like an arrest. They are taught that a quick response is often critical to their child’s long–term prognosis. And yet, Jay’s parents took such a long time to respond to his code that Jay now has severe hypoxic ischemic encephalopathy: his brain was deprived of oxygen for so long that he has no higher cortical function, and will never think, speak, walk, or play.Currently, Jay is ventilator–dependent and has a very poor prognosis. Jay goes back and forth between a nursing home and the hospital. During one of his many hospitalizations, the ICU team decided to call an ethics consultation, because they felt that continued aggressive intervention was no longer in Jay’s best interests. I was the person on the other end of the line when the medical team called. After having a brief conversation with the attending physician, I left my office and walked to the Pediatric ICU to visit Jay. I arrived at the bedside—really just a large crib—and saw a baby with dark hair lying flat on his back. His tongue was swollen and protruding from his mouth, his eyes were puffy and closed, and his limbs were limp. On his belly was a piece of paper with the words, “BECKY PLEASE HELP ME” typed in huge, bold font. I looked up, into the eyes of the attending physician and said, “Did you type that?” The physician nodded yes. Much could be said about this physician’s behavior. But the bottom line—from a clinical perspective, at least—is that this ICU team was desperate, and that they had significant expectations that I would be able to help them.I began the work of the consultation. I reviewed the medical record, spoke with members of the treating team, and set up a time to talk to the family. During the family meeting, I learned that Jay’s parents wanted to continue to treat aggressively, and that they believed it was not their place to decide when it was their son’s time to die. That was [End Page 122] God’s decision. They could not fathom removing interventions that were maintaining their son’s life. They acknowledged that his quality of life was not high, but, still, it was life.The preferences of the treating team were in stark contrast to the parents’ preferences. The neurologists believed Jay did not have the capacity to experience physical pain, but the ICU team believed that continuing to treat Jay was cruel. Although the ICU team acknowledged that Jay was probably not suffering, they noted that we could not know for sure, and that sometimes Jay grimaced and withdrew—signs that are often interpreted as suffering. The ICU team also argued that given all the sick children in the world, and the scarcity of healthcare resources, it didn’t make sense to invest hundreds of thousands of dollars into prolonging Jay’s life. Additionally, they discovered that Jay had osteopenia (weak, brittle bones)—which was causing multiple bone fractures. The ICU team anguished over the thought of Jay’s small, soft bones continuing to break despite their best efforts.The bioethicist in me knows that, as long as the patient isn’t suffering and the parents aren’t demanding futile interventions (they weren’t), our role as providers was not to judge the parents’ value system. I told the ICU team over and over that different people place different value on Jay’s type of life, and that it wasn’t for us to tell them that their value structure was wrong. I talked with other members of the clinical ethics consultation service. Then I brought the case to the entire institutional... (shrink)