American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines (...) conflict or come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other. (shrink)

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex’s parents must decide whether to conduct sequencing on his siblings to help determine if there is a genetic cause for Alex’s (...) developmental disabilities. Second, Alex’s parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex’s parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child. (shrink)

Medical anthropologists have long recognized variation between cultures with regard to the locus of healing in different systems and traditions: that is, in some cultures, the human body is a “bounded physical unit” and healing is thus focused on the body alone. This perspective will be most familiar to Western health-care providers, and indeed, many providers do not imagine an alternative perspective. However, in many cultures, experiences of health, illness, disease, and healing are intricately connected with the social spheres. In (...) these contexts, healing practices and rituals may seek to address family dynamics, alter roles within a community, and resolve social rifts, and illness itself may be... (shrink)

This article describes the process engaged by 17 expert scholars in the development of a set of six consensus recommendations about the normative foundations of pediatric decision-making. The process began with a robust pre-reading assignment, followed by three days of in-person symposium discussions that resulted in a publication in _Pediatrics_ entitled “Pediatric Decision-Making: Consensus Recommendations” (Salter et al. 2023). This article next compares the six recommendations to existing statements about pediatric decision-making (specifically those developed by the American (...) Academy of Pediatrics), highlighting similarities and differences. Finally, the article discusses the value of finding consensus in the field of pediatric bioethics. (shrink)

In this commentary, the author discusses two strengths and two weaknesses of “Better than Best (Interest Standard) in Pediatric Decision-Making,” in which Lainie Friedman Ross critiques the best interest standard and proposes her own model of constrained parental autonomy (CPA) as a preferable replacement for both an intervention principle and a guidance principle in pediatric decision making. The CPA’s strengths are that it detaches from the language and concept of “best” and that it better respects the family as (...) a distinct and intimate decision-making unit. The first weakness of the framework, as an intervention principle, is that because it imports a Rawlsian understanding of basic interests, it neglects certain populations of children (for example, children with intellectual disabilities). The second weakness is that, as a guidance principle, it is unclear what actual guidance the CPA is positioned to offer and how that guidance would be justified. To conclude, this commentary offers suggestions for what should be required of both an intervention principle and a guidance principle in pediatric decision making. (shrink)

Mrs. F, seventy‐five, was diagnosed with Alzheimer's. She and her spouse often discussed how to handle the progression of the disease. She was adamant about not coming to the point where she would be unable to recognize herself, her husband, or their son and daughter. The manner she chose was voluntarily stopping eating and drinking (VSED), and she chose a specific date on which to carry out her plan. She asked her husband to promise, should she ever waver and request (...) nutrition or hydration, to remind her of the reasons she had chosen for pursuing this path.Mrs. F's ability to function was beginning to wax and wane. Sometimes she was her old self, and sometimes she had no recollection of her past identity. After she voluntarily stopped eating and drinking, the couple's promise created a dilemma for her professional caregivers. She asked for food and drink. Her husband and family reminded her of the reasons she had chosen VSED: “Remember, you didn't want to live in a nursing home, and you didn't want us to be responsible for caring for you at home. You believe that stopping eating and drinking will allow you to die with dignity.” Although they also asked Mrs. F, “What do you want to do?” the family asked the professional caregivers to respect her original choice to stop eating and drinking. Mrs. F still evidenced decision‐making capacity but often did not recall having chosen VSED. She again requested food and drink, from family and the professional caregivers.Can VSED be carried out for a patient whose advanced dementia makes disciplined voluntary action difficult? (shrink)

Thirty years ago, Buchanan and Brock distinguished between guidance principles and interference principles in the setting of surrogate decision making on behalf of children and incompetent adult patients. They suggested that the best interest standard could serve as a guidance principle, but was insufficient as an interference principle. In this issue of The Journal of Clinical Ethics, Ross argues that the best interest standard can serve as neither a guidance nor interference principle for decision making on behalf of (...) children, but that her model of constrained parental autonomy can serve as both. I will argue that Buchanan and Brock were correct that a single model or standard cannot serve as both a guidance and interference principle in pediatrics and that the best interest standard is a sufficient guidance principle. The harm principle fulfills the conditions necessary for an interference principle, at least insofar as deciding when state intervention to interfere with parental decision making is justified. (shrink)

Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support int...

Background: Families and clinicians must often weigh competing priorities when making medical decisions for a pediatric patient at the end of life. Few empirical data exist regarding the importance that clinicians place on varying priorities and whether clinical practice conforms to decision-making standards discussed in the literature. Methods: We administered a discrete choice experiment to understand the relative importance of nine pediatric end-of-life decision-making priorities using responses from 364 nurses and physicians from three intensive care units (ICUs) (pediatric (...) ICU, pediatric cardiothoracic ICU, neonatal ICU) in a large children's hospital, with a 54% response rate. We used latent class analysis to characterize subgroups of health professionals based on their patterns of importance for the nine attributes and examined differences in class membership using multinomial logistic regression. Results: Eighty-two percent of respondents were nurses, consistent with the proportion of nurse and physician staff in the units. Latent class analysis separated our sample of health professionals into five distinct classes. All five groups rated the child's comfort and the best interests as most important but differed regarding how they valued other considerations: Group 1 rated highly consideration of the entire family and medical judgment; Group 2, the entire family's interests, parents’ preferences, and religious beliefs; Group 3, maintaining harmony between parents and medical team; Group 4, responsible use of medical resources; and Group 5, medical evidence and prolonging the child's life. Those with more years of experience were less likely to fall in Group 5 (medical evidence/life-prolonging). Profession was not associated with group membership. Conclusions: Nurses and physicians who care for dying children prioritize foremost the child's best interests and comfort but then possess varying secondary priorities about what is most important when making medical decisions. Pediatric palliative care and ethics consultative services should be aware of and prepared to address these differing concerns. (shrink)

In their thoughtful critiques of my article “Better than Best (Interest Standard) in Pediatric Decision Making,” my colleagues make clear that there is little consensus on what is (are) the appropriate guidance and intervention principles in pediatric decision making, and disagree about whether one principle can serve both functions. Hester proposes his own unitary principle, the reasonable interest standard, which, like the best interest standard from which it is derived, encourages parents to aim for the great, although Hester (...) tempers it with a pragmatic principle that allows consideration of cultural/family values and practical/financial/social/psychological circumstances. I reject the aspirational guidance principle because it is too demanding, and I also reject the notion that this pragmatic condition “gives permission for others to extol parents to give reasons” for their decisions, because it allows too much interference into the family and its decision making. Whereas the other respondents and I focus on whether and when third parties should intervene in the doctor-patient (surrogate) relationship, Navin and Wasserman mistakenly redefine intervention to include physicians’ behaviors that attempt to influence parents, ignoring the integral role of shared decision making—a bidirectional discussion in which physicians help patients (surrogates) select among reasonable medical options through education, and, when necessary, motivation or persuasion. Diekema and Salter focus on the harm principle for intervention, ignoring other conditions when intervention may be appropriate and institutions other than the state that may intervene. Paquette’s overly narrow interpretation of who has positive obligations to children fails to ensure their basic interests and needs are met. Finally, Bester claims the “need to choose the available option that best promotes or protects the child’s basic interests” is akin to a focus on best interest. But constrained parental autonomy does not require parents to choose the option that best promotes their child’s basic interests. Rather, it requires respect for broad parental discretion about how they raise their child unless their decisions fail to promote the child’s basic needs and interests. (shrink)

The argument for children's rights in health care has been long in the making. The success of this position is reflected in the 1995 American Academy of Pediatrics recommendations for the role of children in health care decisionmaking, which suggest that children be given greater voice as they mature. But there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. Parents need the moral and legal space within which (...) to make decisions that will facilitate their child's long‐term autonomy, not only her present‐day autonomy. Moreover, third‐party intrusion, by physicians or the state, should be resisted unless negligent and abusive decisions are in the making. (shrink)

Although parents are the default legal surrogate decision-makers for minor children in the U.S., shared decision making in a pluralistic society is often much more complicated, involving not just parents and pediatricians, but also grandparents, other relatives, and even community or religious elders. Parents may not only choose to involve others in their children’s healthcare decisions but choose to defer to another; such deference does not imply agreement with the decision being made and adds complexity when disagreements (...) arise between surrogate decision-makers for minor children and their physicians. I argue that clinicians and ethicists have a duty to consider voices marginalized by hierarchical structures, including but not limited to gender-based inequalities. This approach involves negotiating potential conflicts: between respecting differences of culture and religion, on one hand, and assuring that the wishes of those who are most invested in children’s lives are considered, on the other. (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)

More than 24,000 patients await organ transplants and the number is increasing yearly. Living donors are an important source of transplant organs. In this paper, I argue that we can morally justify allowing children to serve as donors. Yet, I also argue that their participation must be restricted in order to prevent their exploitation.The paper is divided into six sections. In the first section, I show why the traditional principles of personal autonomy and beneficence are not adequate morally to justify (...) the participation of children in the nontherapeutic role of organ donor. Next, I argue that the moral justification of the child’s participation must be based on the intimate family relationship which permits activities that would be unacceptable in the public domain. In the third section, I argue that family autonomy ought to be limited by the principle of respect for persons. In the fourth section, I propose five principles to guide the participation of children as organ donors. In section five, I discuss the role of the child in the decision-making process. In section six, I critically examine the criteria for equity in donor selection. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Introduction to the Special Issue on Pediatric Decision-MakingErica K. SalterUnlike in the traditional decisional dyad in adult-based care, pediatric decision-making typically involves a triadic relationship among the patient, their parents, and the health-care providers. This complex relationship raises questions and concerns regarding each party’s expectations, obligations, and authority. For example, should a parent be allowed to withhold a poor diagnosis from an adolescent patient? Should an HLA-matched (...) six-year-old sister be permitted to serve as a bone marrow donor for her older sibling with lysosomal storage disease? Or, should parents be given decisional authority to consent to gender-affirming care for an adolescent with gender dysphoria? Cases like these are among the most ethically challenging decisions faced by parents and health-care providers because they present competing interests and values, and it’s not always clear what is in the best interests of the child.In the context of American medicine, the best interest standard has been identified as the primary ethical and legal guide for decision-making. In its most prominent form, the best interest standard requires parents and pediatric practitioners to choose the medical treatment that maximizes benefits and minimizes harms to the particular child in question. However, over the past few decades, the standard has come under significant scrutiny, with discussions and debate in the academic bioethics literature asking whether the standard is able to serve the [End Page 181] purposes it is thought to serve and whether alternative standards might be better suited to the task(s). Despite vigorous interest in these issues, the academic literature did not seem to generate any sense of identifiable consensus about how others ought to make health-care decisions on behalf of children.Thus, in June 2022, 17 scholar-experts on pediatric decision-making standards gathered in St. Louis, MO, for a three-day symposium of discussion and consensus-building. The participating authors represented different disciplinary perspectives and different viewpoints in the debate about guidance principles that underlie pediatrics. Despite apparent disagreement about such standards in the literature, the group was able to generate a set of six consensus-based recommendations (see Table 1) for pediatric decision-making. These recommendations, as well as their application, justification, and limitations, were published as a special article in Pediatrics in August 2023 (Salter et al. 2023), which was composed with the primary goals of accessibility, teachability, and implementability for practicing pediatric clinicians. Click for larger view View full resolutionTable 1.Six consensus recommendations for pediatric decision-makingWhile the group was able to find agreement about these six central principles of pediatric decision-making, there remained several related issues that were outside of the scope of the symposium aims. For example, should these recommendations apply to neonates, children in state custody, or adolescents, and if so, how would their application be operationalized? What specific conditions should justify state intervention on parental authority? How should parents and health-care providers think about obligations to siblings in health-care decisions? This [End Page 182] special issue of Perspectives in Biology and Medicine provides a forum for our authors and collaborators to further explore these, and other, important questions.The issue opens with a piece by the symposium organizers and editors of this special issue, Erica Salter, Lainie Friedman Ross, and D. Micah Hester, describing the symposium’s inspiration and design, its execution, and the implications it might have for pediatric ethics. This contribution compares the six symposium recommendations with existing statements about pediatric decision-making, in particular the statements developed by the American Academy of Pediatrics (AAP). In “How We Found Consensus on Pediatric Decision-Making and Why It Matters,” readers will find a detailed account of the process engaged to develop the six consensus-based recommendations, as well as a discussion of the value and limitations of such a process, which may serve as a model of consensus-building useful for other unsettled topics of interest in the bioethics community.The issue’s second article, “Childhood Interests: What They Are, and Why It Matters,” by Johan Bester and Jeffrey Blustein, dives into the conceptual foundation of the symposium’s first two recommendations. This... (shrink)

A couple and their five‐year‐old daughter are in a car accident. The parents are not expected to survive. The child is transported to a children's hospital, and urgent treatment decisions must be made. Whom should the attending physician approach to make decisions for the child? When such cases arise in, for example, the hospitals where we work, the social worker or chaplain is instructed to use the Illinois Health Care Surrogacy Act as a guidepost to identify a decision‐maker. But (...) in our state and the country overall, the limitations of such statutes leave hospital workers to make a judgment call among friends, family, and clergy who may come forward. While surrogate decision‐making statutes comprehensively address surrogate decision‐makers for adults, a patchwork of laws—permanency statutes, kinship provider statutes, standby guardianship statutes, and, in some cases, surrogate decision‐making statutes—provide variable decision‐making pathways for children. (shrink)

There is little information about the content of ethics consultations in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records at St. Jude Children's Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician's fiduciary responsibility to the patient. Nonpatient consultations provided (...) guidance in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates that the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision making among multiple stakeholders, and further prospective research is need.. (shrink)

continent. 2.3 (2012): 218–223 Vijay Prashad. Arab Spring, Libyan Winter . Oakland: AK Press. 2012. 271pp, pbk. $14.95 ISBN-13: 978-1849351126. Nearly a decade ago, I sat in a class entitled, quite simply, “Corporations,” taught by Vijay Prashad at Trinity College. Over the course of the semester, I was amazed at the extent of Prashad’s knowledge, and the complexity and erudition of his style. He has since authored a number of classic books that have gained recognition throughout the world. The Darker (...) Nations , a peoples’ history of the Third World, sent defibrillating shockwaves through an academic world that had almost forgotten the epic scope and historic dignity of the non-aligned movement and post-colonial struggles. In his recent, award-winning work, Arab Spring, Libyan Winter , Prashad delves into his capacious knowledge of the Third World to excavate the discourses and narratives surrounding the upheavals of 2011. “Revolutions have no specific timetable,” states Prashad in the opening line of this exciting and provocative look at contemporary events. Instantly, an atmosphere of suspense emerges. The reader is alerted to the problem of history. Does the making of history then involve a suspension of historical time, or is it a continuous narrative structure into which events must eventually be integrated? Arab Spring, Libyan Winter shows that the answer to the question, “How is history made?” lies just as easily in the asking. The first half of the book works through the events that transpired to bring about the explosive popular uprisings of Arab Spring: Tunisia and Egypt, Yemen and Bahrain. But the events are not put together in a cohesive, chronological fashion. Using an uncommonly gripping style more akin to the folk-story motif of the djeli than to traditionally Orientalist academia, Prashad suspends a given situation, points out its components, and traces back the characters and genealogies that define each link before resuming a narrative. Every moment is an end to itself, and an origin of something different. Thus, the making of history becomes the suspension of its own progress, it’s catastrophic 'stability,' in a process of differentiation through inclusion. Empirically, one might suggest that history is a condition of time, and by extension, of the subject, but history is also an eminent producer of the Subject and her concept of time through memory and narrative. Hence, history is often overdetermined by a dominant narrative of the sovereign. The apparently chaotic composition of Prashad’s historicity is, then, an interstitial morphology of resistance. It illustrates that the time to act for the revolutionary lies in the gaps within the dominant historical realities. It points out the sorties of signifiers constituting nothing in the obliterated ruins of history. Through such illuminations, Arab Spring, Libyan Winter breaks through “the surface of history” to elaborate revolution’s snapping synapses, exploding interruptions and breaches, connecting flows. Messianic Politics It is tempting to think, 'History is either singular, or it is diffuse. It is either one coherent factual narrative, or it is comprised of the aletheia of the multitude.' Yet the reader finds Prashad examining the structure of history on multiple levels. For Prashad, world history is shaped by geographically defined political movements, such as communism or national liberation, with historical agents like the working class for the former and the nationalist militant for the latter. Religion, however, is another matter: “Religion has an unshakable eschatology which a post-utopian secular politics lacks.” Within the telos of religion, there appears on the horizon the image of Benjamin’s thoughts on messianic time—time as “a small fissure in the continuous catastrophe,” a break with history, may contain an ultimate redemption of the human beyond the political power struggle. Succoring the split between geo-political and utopian-religious (messianic) time in the context of Arab Spring, Prashad indicates that the base of “the deep desire and commitment to some form of democracy” is forged by the affinity between eschatological Islamist politics with the People. To think about the Subject of messianic time in the context of the lack of a “coherent timetable” for emancipatory politics, it is perhaps best to return to the modern tradition of Martin Luther King, Jr., whose prefigurative blending of liberation theology and emancipatory politics became most important during his works of 1963, the climactic year of “The Letter from a Birmingham Jail,” the March on Washington, and the bombing of the 16th Street Baptist Church. In “The Letter,” King states the point bluntly: Frankly, I have yet to engage in a direct-action campaign that was “well timed” in view of those who have not suffered unduly from the disease of segregation. For years now I have heard the word “wait!” It rings in the ear of every Negro with piercing familiarity. This “Wait” has almost always meant ‘Never.” We must come to see, with one of our distinguished jurists, that “justice too long delayed is justice denied.” The timing of rebellious action must not be a part of history. It must change history. The kairos appears spontaneous and untimely in its convulsive, shocking presence, yet it is, deeper still, a path, a longue durée , forged through diligent and rigorous praxis. King put a finer point on the path of historic liberation in his declaration in his 1963 speech at Western Michigan University: “[T]ime is neutral.... Somewhere along the way we must see that time will never solve the problem alone but that we must help time. Somewhere we must see that human progress never rolls in on the wheels on inevitability. It comes through the tireless efforts and the persistent work of dedicated individuals who are willing to be co-workers with God. Without this hard work, time itself becomes an ally of the insurgent and primitive forces of irrational emotionalism and social stagnation. We must always help time and realize that the time is always right to do right.” Time, then, exists in “the neutral,” while action must turn to the kairos , not only of taking time, but taking the right time. By turning our relation to time into kairos , we move time from its context within history to a duration between histories—the longue dure?e of Messianic time. The implementation of neutrality in this context suggests a broad space of time to extend through the valley of positive and negative. In Roland Barthes’s lectures from 1978, the neutral takes place in this minimal distance of non-conflict that exists outside of two extremes. It is, in the words of Maurice Blanchot, “the non-general, the non-generic, as well as the non-specific.” For Blanchot, the neutrality of time permeates life as death, impassive and beyond control; such is the neutrality of messianic time, which permeates the charge of history, changing the "I" into the "one." The neutrality of time therefore implicates history in a case against extremism, showing that the work of the radical is not to tend to any particular side, but to have the time to navigate through the terrible terrain of history by altering its course, its patterns and rhythms of movement, connection, sociality. Hence, one does not simply “make history,” one alters the course of history in accordance to “the right time.” The historical path toward emerging power is transmitted as a gesture to the outside of history, against history; a gesture as simple as reaching out. Thus a counterhistory, to use Foucault’s term, is brought forward as the guide of time past a point of no return, a Rubicon, the point where the normal path of history falls to the past. The subject, who must be the only true agent of history, facilitates time through helpfulness, and both the Subject and her history become decentered in relation to one another. Yet history negates the neutrality of time. As Barthes discloses, although the neutral is the “thought and practice of the nonconflictual, it is nevertheless bound to assertion, to conflict, in order to make itself heard.” Engaged with history, time is charged with a destiny, and becomes an opposition. As Prashad insists, “For Arab lands, the events of early 2011 were not the inauguration of a new history, but the continuation of an unfinished struggle that is a hundred years old.” The emergence of the Subject during Arab Spring did not conceive of a new history, but changed the path of history toward a different destiny. “Historical grievances combined with inflationary pressures now met with the subjective sense that victory might be at hand—this was not simply a protest to scream into the wind, but a protest to actually remove autocrats from their positions of authority. The facts of resistance had given way to the expectation of revolutionary change.” The negativity of this charge toward “revolutionary destiny” rendered control, as a positive force, seriously lacking. The lack of control lies in the problem that the Subject is not totally detemporalized or timeless, but untimely in her presence. The Subject is untimely, because her work is visionary, and it is only through such visionary work that the Rubicon can be crossed. Still, the crossing of this border is haunted by anxiety over an impending disaster that lays in wait. It is only through the form of what Benjamin calls divine violence, captivated not with the justice of the means, but the ends—the transformation of history—that a revelation of history’s traumatic foundations can be liberated, and patterns and rhythms of time developed throughout obscured traditions awakened. In this situation, the Subject appears to be outside of right, but setting the state to rights. Because her position is correct, in-so-far as the rebelling subject rebels due to a lack of recognition, her representation appears outside of the norm, which is mistaken as right. Therefore, such visionary work must be carried out through obscured traditions, underground, away from the surveillance of empire. Explaining his method from the start along the lines of Marx’s metaphor of the mole, Prashad insists, “It is the burrowing that is essential, not simply the emergence onto the surface of history.” Arab Spring, Libyan Winter is a book on uncharted networks of time, spread out over the 252 pages like an elaborate spider’s web of passages intertwining with and overwhelming the machinery of the state. Although untimely, Arab Spring was not a flash in the pan, or a Facebook or Twitter revolution. Prashad notes that the government’s suspension of these tools led to further radicalism by furthering communications through face-to-face encounters. In existential terms, Arab Spring might be thought of as a revolution of Being over techne , an uprising of the unchartable, infinite potential of the Other. The name of this Other is found in Chance. The faith of the revolution lies in the proper decentering of the subject, its giving to the Other of time, for only with respect to time does history actually appear on the horizon of the subject, rather than as an imposition. This time of historical agency appears as a moment when anything can happen—a revolutionary truth event where everything comes into question while being realized in its Otherness as a community of the people begins anew in the streets amidst discourse, friendship, reconfigurations of hegemony, and a becoming of a constituent power. Throwing a wrench into the gears of the “cobwebbed tradition” of Orientalism, the decentering of history in Arab Spring, Libyan Winter is a defining quality of its impassioned revolutionary cry. But perhaps the most paradigmatic points of the book emerge from the unexpected voices. To make the connection between the particular manifestations of revolutionary demands to the general historic terms of revolution, Prashad quotes an anonymous young Egyptian in Tahrir Square, who reminds us, “[T]he French Revolution took a very long time so the people could eventually get their rights.” Far from timelessness, the historicization of Arab Spring must exist precisely within the most uncanny appearance of time, as something that does not appear to come from the natural state of time as we know it, but in arriving has completely transformed the way that we understand time. Strange Monsters Revolution is never as simple as a revolt from below against a rusting structure of elites trying to remain in power. As with the French Revolution, Arab Spring consisted of complex familial ties, outside interests, and religious factions fighting alongside, often in awkward juxtaposition to, liberals, working class parties, farmers, and students. It is perhaps because of this historically difficult and incongruous composition that the Arabic word for revolution is thawra , referring to the image of the bull, or thawr , which has religious significance as a pagan deity for the Ancient Semitic tribes and Cartheginians. If Daniel Guérin was correct in saying, “Anarchism and Marxism drink from the same spring,” then it is quite a different oasis that drove the thirsty beast of revolution through what Prashad calls, “the Libyan labyrinth.” Recalling Bataille’s Acéphale, the intestinal labyrinth gains significance as the mode of metabolism and rumination in which, “(the Acephale) has lost himself, loses me with him, and in which I discover myself as him, in other words, as a monster.” Unraveling the discourse of the revolution, the flows of power and hegemony—from Qaddafi’s nationalist coup in 1969 to the wars with Chad from 1978 to 1987, the neoliberal reforms of the 1990s to, finally, the War on Terror—we find that the metabolic process of Libyan Winter ends in the production of oil. In a process of what Prashad calls “involution,” Qaddafi’s bellicose policies, along with his attempts to nationalize Islam together with oil, mutated the source of his power, turning his house against itself. Already a divided nation, with its two major cities on opposite geographic sides of the country, Libya became split between two opposed political powers—liberal reformists and staunch nationalists—as Qaddafi’s political disengagement manifested through what can only be described in psychoanalytic terms as a recursive passage a l’act (mysteriously calling Wikipedia “Kleenex,” declaring that opponents drank hallucinogens with their instant coffee, and so on). Prashad declares, “The mercurial style that Qaddafi adopted was not about his personality alone, but also a leader’s natural response to a system that relied upon power brokers whose own loyalty… did not have any ideological commitment to the system.” As in the case of other nations during Arab Spring, the true expression of revolt was an outward exposition of what had inwardly been happening in microcosmic societies throughout the realm—from indigenous tribes to political parties, for a century, the people, partly motivated by (and in resistance to) economic impositions of development, had been changing the traditional social compositions and participating in what Ruth Wilson Gilmore calls, “the relative autonomy of the movement from the leaders.” It was this empowerment of political reconfigurations taking place under the context of new democratic assemblages that shocked the elites and evoked such a powerful response. Unlike Qaddafi’s awkward policy choices and rants, real acts of power from the West were clear and decisive. Prashad sets the stages of war and diplomacy, far removed from the deserts, mountains, and cities that forged the backdrop of popular politics. Taking place under the now-classic architecture of the “four pillars” of US interests—oil, the War on Terror, Israel, and the circumvention of Iranian hegemony—we find elites rubbing elbows in “Heliopolist cocktail parties and hushed conferences in Kasr al-Ittihadiya” as well as the Concorde-Lafayette hotel in Paris, which provides the setting for a meeting of anti-Qaddafi figures consolidating their power. These scenes are buttressed with the careful portraiture of key historical actors. As Prashad brings the stage of history to life, we find the diplomats and liberals like Frank Wisner, whose career has brought him from Enron in the late 1990s to the Obama Administration, under the aegis of which he was meeting with Mubarak about military support during Arab Spring. We spy the provocateurs, for instance, gauche cavalier , Bernard Henri-Levy, who telephones Sarkozy from Benghazi about the need for more NATO air strikes. We follow the rebel military establishment as it suffers mysterious deaths and even more mysterious assents (like that of apparent CIA cohort, Khalifa Hifter). In each of these intriguing characters, we find different representations of the security state biopolitique: an oil-injected reification that drives Arab Spring from the resentment of rising food prices to the brink of implosion in Libyan Winter. Reminiscent of the scenes of Cold War soirées represented in old Bond films, the aristocratic fight for oil against democracy that was Libyan Winter presents a harsh truth that the new global crisis is simply the continuation of the old history: the global exploitation of capitalism waged against the imagination of the people. As Benjamin laments, “The labyrinth is the right path for the person who always arrives early enough at his destination. This destination is the marketplace.” Yet, “(t)he labyrinth is the habitat of… a humanity (a class) which does not want to know where its destiny is taking it.” Thus, the labyrinth leads, like the desert, only further into itself. As Blanchot explains, “The desert is even less certain than the world; it is never anything but the approach to the desert.” Only the visionary can take time out of the involution toward oblivion. It is here, in this approach to and escape from history, that we find ourselves within Benjamin’s Golgotha, Blanchot’s desert: A space of indeterminate uncertainty where we become familiar only with our own exile. Blanchot writes, “For the moderated and moderate man, the room, the desert, and the world are strictly determined places. For the man of the desert and the labyrinth, devoted to the error of a journey necessarily a little longer than his life, the same space will be truly infinite, even if he knows that it is not, all the more so since he knows it.” The desert, as allegory, provides an eschatology, a mortality in the destiny of Arab Spring. But any allegory of nature might lead to a labyrinthine eschatology (for example, in Bachelard, the forest presents "a limitless world"); the prescience of the untimely is always an uncanny acceptance of the infinite within the finite—the outside of what is understood. Transgenerational and occupied with the image of the future, the untimely makes otherness its home as it proceeds toward liberation. In the work of helping time navigate this dangerous passage of history, Prashad illustrates that the more violent break with history may have occurred in the peaceable struggles of Tahrir Square, and not in the military clashes of Qaddafi with his former Generals who defected to the CIA and NATO countries. It might be possible to suggest, then, that in the case of Tunisia and Egypt, the historical subject of the people was drawn together in a Dionysian dance of different rhythms in the marvelous realm of the ancients, while we fear that the case of Libya suggests an Apollonian future where time, itself, may lay dying under the machinic hand of history. The properly Nietzschean inversion would follow: time is dead, for history has killed it. Yet, if time is dead, struck down in Golgotha, exposed in the desert, mauled by the thawra , it is only in the present sense that it is rendered impossible outside of the context into which the untimely has thrown us. Thus, if history becomes an art of revolution, life as being-towards-death (death as the provocation of the neutrality of time) becomes what Benjamin calls “the allegory of resurrection” through the glorious ruins of history. Prashad ends his work with a rousing finale: “The time of the impossible has presented itself. In Egypt, where the appetite for the possibilities of the future are greatest, the people continue to assert themselves into Tahrir Square and other places, pushing to reinvigorate a Revolution that must not die… For them the slogan is simple: Down with the Present. Long live the Future. May it be so.&rdquo. (shrink)

the issue of liberal neutrality, a topic suggested by the work of Catharine MacKinnon. I discuss two kinds of neutrality: neutrality at the level of justifying liberalism itself, and state neutrality in political decision-making. Both kinds are contentious within liberal theory. Rawls’s argument for justice as fairness has been criticized for non-neutrality at the justificatory level, a problem noted by Rawls himself in Political Liberalism . I will defend a qualified account of neutrality at the justificatory level, taking an (...) epistemic approach to argue for the exclusion of certain doctrines from the justificatory process. I then argue that the justification process I describe offers a justificatory stance supportive of the feminist rejection of state-sponsored gender hierarchy. Further, I argue that liberal neutrality at the level of political decision-making will have surprising implications for gender equality. Once the extent of the state’s involvement in the apparently private spheres of family and civil society is recognized, and the disproportionate influence of a sexist conception of the good on those structures—and concomitant promotion of that ideal—is seen, state neutrality implies substantive change. While—as Susan Moller Okin avowed—Rawls himself may have remained ambiguous on how to address gender inequality, his theory implies that the state must seek to create substantive, not merely formal, equality. I suggest that those substantive changes will not conflict with liberal neutrality but instead be required by it. (shrink)

The case of Twin B involves the decision to send a newborn to a less intensive Level 2 special care nursery (SCN) than to the Level 3 neonatal intensive care unit (NICU) that is considered optimal by the physician. The physician’s acceptance of the transfer is against the child’s best interest and is due to parental convenience. In analyzing the case, we reject the best interest standard. Our rejection is partly supported by the views of Douglas Diekema, John Hardwig, (...) and Lannie Ross. Instead of the best interest standard, we offer and defend an approach we base on a microeconomic analysis of externalities, such as those involved with automobile emissions. This extends our previously presented general microeconomic approach to patient decision-making. It provides a clearer way to evaluate situations, like those of Twin B, in which burdens faced by family members may be used to determine the appropriate level of treatment for a decisionally incapable patient. (shrink)

Bioethics has dedicated itself to exploring and defending both reasons for and against certain aspects of clinical care, biomedical research and health policy, including what decisions must be made, who should make them, and how they should be made. In pediatrics, it’s widely acknowledged that parents’ reasons may matter pragmatically; attending to parents’ reasons is important if we want to work with families. Yet the conventional view in pediatric ethics is that parents’ reasons are irrelevant to whether a decision (...) is permissible or impermissible according to accepted ethical standards. In this paper, we explore whether parents’ reasons matter ethically and, if so, in what way and for whom. First, we clarify what we mean by ‘reasons.’ Second, we provide an overview of how reasons are typically treated in medical decision-making and pediatric ethics. Third, we analyze a hypothetical pediatric case to illustrate how changing reasons can transform ethical analyses, including by contributing to where and how clinicians and ethicists draw the boundaries intrinsic to common pediatric ethical frameworks. We push back against the conventional view and argue that parents’ reasons matter ethically in several ways. We call for further research on the role of parents’ reasons in clinical ethics deliberation. (shrink)

While today an often stated concern of development planning in the Third World is the participation of people in the decision-making process, in many cases the nature of popular participation in the planning process is generally limited in its jurisdictional scope and restricted in its application. This article explores perceptions of development professionals and local citizens regarding barriers and willingness to participate in decision making, local leadership, and local institutionalization processes across three types (state agricultural universities, central research (...) institutes, and nongovernmental organizations) of Farm Science Centers in eleven or ganizations in India. Findings suggest that willingness to participate may turn on reconciling competing institutional beliefs and working relationships. A strategy emphasizing cultural sensitively for enhancing local action relevant to agricultural and rural development practitioners is presented. (shrink)

Since Clinical Ethics Consultation has become important in the public health sector in the last decade in Germany, there are on-going questions about effectiveness. Targets have been established by the Ethics Committees, in regard to assisting patients, families and health care teams at times of ethical conflicts during the decision-making process in medical care. Of all the ethics consultations over the last eight years at Erlangen University Hospital the consultations carried out in the pediatric department were chosen to be (...) reviewed by a pediatrician and an ethicist. These were evaluated on the basis of team formation, interdisciplinary orientation, ethical criteria, completeness and methods of documentation. Results of the analysis of those records show a well-organized consultation team with regard to its personnel composition. Discrepancies with ethical questions posed in the literature are revealed, and also some partially incomplete documentation regarding medical facts and descriptions of the patients' or parents' opinion. (shrink)

“Moral hazard” is a term familiar in economics and business ethics that illuminates why rational parties sometimes choose decisions with bad moral outcomes without necessarily intending to behave selfishly or immorally. The term is not generally used in medical ethics. Decision makers such as parents and physicians generally do not use the concept or the word in evaluating ethical dilemmas. They may not even be aware of the precise nature of the moral hazard problem they are experiencing, beyond a (...) general concern for the patient's seemingly excessive burden. This article brings the language and logic of moral hazard to pediatrics. The concept reminds us that decision makers in this context are often not the primary party affected by their decisions. It appraises the full scope of risk at issue when decision makers decide on behalf of others and leads us to separate, respect, and prioritize the interests of affected parties. (shrink)

Applying two theories to complex contexts results in a more well-rounded case analysis. This case, involving a Latinx family within pediatrics, requires a multi-faceted approach to better evaluate the culturally specific needs of the patient and the family system. A Mujerista theological approach highlights the subjective nature of family values and lived wisdom. This Mujerista approach adds another dimension, along with a Family Interest Model, for medical decision making.

Historically, parents looking for guidance turned to a small cadre of trusted individuals such as grandparents and pediatricians. In the Internet era, this paradigm has shifted. With a few keystrokes, anxious parents have access to a seemingly endless array of opinions from faceless sources with unknown agendas. For some parents, this can cause more uncertainty, and for the parents of a child with a medical condition, navigating this information can be overwhelming. In this modern paradigm, the pediatrician's duty has also (...) become more complex, especially with the shift from paternalism to patient autonomy in medical decision-making. It is within this context that Alan Fleischman's book, Pediatric Ethics: Protecting the Interests of Children, should be examined. A pediatrician and neonatologist, Fleischman has witnessed this evolution over more than five decades of practice. As a clinical and academic bioethicist, he has also witnessed a transformation in the field of bioethics, with shifting perspectives on areas such as research ethics and medical decision-making. Because of his rich experience and deep understanding of the past and present of ethical issues in pediatrics, Fleischman approaches this subject with a perspective that warrants attention and thoughtful consideration. (shrink)

When shared decision making breaks down and parents and medical providers have developed entrenched and conflicting views, ethical frameworks are needed to find a way forward. This article reviews the evolution of thought about the best interest standard and then discusses the advantages of the harm principle (HP) and the zone of parental discretion (ZPD). Applying these frameworks to parental refusals in situations of complexity and uncertainty presents challenges that necessitate concrete substeps to analyze the big picture and identify (...) key questions. I outline and defend a new decision-making tool that includes three parts: identifying the nature of the disagreement, checklists for key elements of the HP and ZPD, and a “think list” of specific questions designed to enhance use of the HP and ZPD in clinical decision making. These tools together will assist those embroiled in complex disagreements to disentangle the issues to find a path to resolution. (shrink)

Balance and common sense are commonplace concepts used to bring an audience to a place of shared understanding. These commonplaces also function as decision-making heuristics. I argue in this paper that the commonplaces ?balance? and ?common sense? are problematic because they suggest decision-making strategies that strip associated information of complexity and value. Through an examination of theory and responses to interviews conducted in relation to an ongoing project on environmental rhetoric, I problematize these concepts and consider how awareness (...) of the interaction of these commonplaces and heuristics can benefit rhetors and agencies seeking environmental change. (shrink)

Children’s age and developmental capacity leave them incapable of making medical decisions for themselves. Decisions for children are traditionally made under the best interest standard. Ross calls into question whether the best interest standard can function as both a guidance and intervention principle, able to be applied across the spectrum of pediatric decision making. Ross describes constrained parental autonomy as an alternative model, arguing that it affords parents the ability to make decisions within the context of their family while (...) upholding a child’s current and future interests. Although the model provides a robust framework for intrafamilial decision making, I question whether it can be broadly applied to children living in non-intimate families. (shrink)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies on end-of-life (...) class='Hi'>decision making in pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

Healthcare decision making for children has adopted the best interest of the child standard, a principle originally employed by judges to adjudicate child placement in the case of parental death, divorce, or incompetence. Philosophers and medical ethicists have argued whether the best interest principle is a guidance principle (informing parents on how they should make healthcare decisions for their child), an intervention principle (deciding the limits of parental autonomy in healthcare decision making), or both. Those who defend it (...) as only a guidance principle often cite the harm principle as the appropriate intervention principle. In this article, I challenge current use of the best interest principle in pediatric decision making as a guidance principle and as an intervention principle. I propose a model that I call constrained parental autonomy, which focuses on promoting and protecting the child’s primary goods or basic needs. I show that constrained parental autonomy can serve as both a guidance principle and an intervention principle in making decisions. I conclude by examining a case study involving bone marrow donation by a young child to her sister. (shrink)

Abstract:This paper develops a framework for examining decision making about ethical issues and tests the applicability of a social contract perspective. Using two separate samples of students and salespeople, we determine that community members (salespeople) tend to judge a potentially unethical act to constitute a violation of an implicit social contract and non-community members (students) do not. Also, consistent with the emphasis on context specificity of integrative social contracts theory, situational variables influence perceptions of ethicality for the community members, (...) but do not affect the perceptions of individuals outside the community. The study finds considerable support for the use of a social contractarian perspective in the study of decision-making processes about ethical issues. (shrink)

In “The Harm Principle Cannot Replace the Best Interest Standard: Problems With Using the Harm Principle for Medical Decision Making for Children,” Bester argues that conceptual and normative diffi...

Current research suggests consumers trade off price, quality, and sustainability attributes when making choices. Prior studies have typically focused on product attribute dyads, rather than multiattribute decision-making in the sustainability context. For scholars and practitioners, understanding which attributes are more important to consumers in tradeoff contexts has been a challenge. Self-other orientation may play a significant role in predicting consumers’ sustainable choices. We use prior research on equity sensitivity to demonstrate that segmenting consumers by their disposition to self-other tradeoffs (...) helps predict price–quality–sustainability tradeoffs. We hypothesize and test how members of these equity sensitivity segments tradeoff price, quality, and sustainability attributes in consumption decisions. Through four conjoint studies featuring diverse product assortments and sustainability issues, we find that price provides high utility for Entitled consumers, while sustainability provides high utility for Benevolent consumers. When product attributes are combined, Benevolents are more likely than Entitleds to purchase sustainable products. We also demonstrate that, in the absence of product choices, Equity Sensitives are more willing to choose a sustainable option over a conventional option, even when prices are high. In light of these findings, we discuss the implications for scholars looking to broadly predict consumers’ sustainable choices and for firms looking to target consumers with consumer-centric sustainability strategy. (shrink)

Families frequently act as substitute decisionmakers for their older members who suffer from diminished mental capacity to make and express their own medical choices. Substitute decisionmaking takes on particular ethical and legal urgency within the nursing home environment, especially when choices concern potential medical treatment near the end of the nursing home resident's life. This article examines current legal mechanisms in the United States that enable a family to make substitute medical decisions, the ethical underpinnings of those mechanisms, and specific (...) ethical and legal considerations implicated by their application to the nursing home setting. The article offers advice to nursing home professionals, including physicians, in working with families as substitute decisionmakers. (shrink)

This essay explores the preferences, anticipations and expectations of the elderly regarding the role of family members in making health care decisions for them should they become decisionally incapacitated. Findings are presented from a series of in-depth interviews of men and women aged 67–91 years. Following a discussion of the uncertain legal status of familial surrogate decision-making, we argue that the family unit's autonomy is sufficient to justify the elderly's preferred reliance on their own family. Further, we suggest that (...) social and legal policy changes should facilitate, rather than impede, familial decision-making. (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)

Decision making for children who suffer abusive head trauma invokes multiple ethical considerations. The degree to which parents are permitted to participate in decision making after the injury has occurred is controversial. In particular, in this issue of The Journal of Clinical Ethics, Grigorian and colleagues raise concerns about the potential for conflict of interest in end-of-life decision making if the parents are facing criminal charges that could be escalated if the child dies. There are additional concerns (...) about the parents’ capacity to make decisions that are best for the child, given that the injury occurred. We argue that there are important reasons not to exclude parents from the decision-making process and that, with appropriate safeguards in place, parents are integral to determining what is best for the child. (shrink)

The aim of this study was to investigate factors associated with seriously ill patients’ preferences for their family and physicians making resuscitation decisions on their behalf. Using SUPPORT II data, the study revealed that, among 362 seriously ill patients who were experiencing pain, 277 (77%) answered that they would want their family and physicians to make resuscitation decisions for them instead of their own wishes being followed if they were to lose decision-making capacity. Even after controlling for other variables, (...) patients who preferred the option of undergoing cardiopulmonary resuscitation (CPR) in the future were twice as likely, and those who had had ventilator treatment were four-fifths less likely, to rely on their family and physicians than those who did not want CPR (odds ratio (OR)-2.28; 95% confidence interval (CI) 1.18-4.38) or those who had not received ventilator treatment (OR-0.23; 95% CI 0.06-0.90). Psychological variables (anxiety, quality of life, and depression), symptomatic variables (severity of pain and activities of daily living) and the existence of surrogates were not significantly associated with patients’ preferences for having their family and physicians make resuscitation decisions for them. Age was not a significant factor for predicting the decision-making role after controlling for other variables. (shrink)