The aim of this article is to generate knowledge about parents’ participation in life-and-death decisions concerning their very premature and/or critically ill infants in hospital neonatal units. The question is: what are parents’ attitudes towards their involvement in such decision making? A descriptive study design using in-depth interviews was chosen. During the period 1997-2000, 20 qualitative interviews with 35 parents of 26 children were carried out. Ten of the infants died; 16 were alive at the time of the interview. (...) The comparative method (grounded theory) was used to analyse the data. The analysis was carried out continuously and in parallel with data collection. Six categories were revealed by the analysis: indecision and uncertainty (ambivalence); information and communication; participate, but do not decide; seeming to be included; the parents’ child; and individual consideration. The findings appear to indicate that parents agree that they should not have the final word in decisions concerning their infants’ future life or death. Such a responsibility would put too heavy a burden on parents who lack the medical knowledge and the professional experience needed to make such a decision, and would be likely to lead to them experiencing strong feelings of guilt. The findings show that parents should be well informed and listened to during the whole decision-making process. Their primary concern was how nurses and physicians communicate with parents who are experiencing a crisis, and how this serious information is presented. (shrink)

ObjectiveTo present (1) the ethical concepts related to the debate on resuscitation of extremely premature infants (EPIs) as they are described in the ethical literature; and (2) the ethical arguments based on these concepts.DesignWe conducted a systematic review of the ethical literature. We selected articles based on the following predefined inclusion/exclusion criteria: (1) English language articles (2) presenting fully elaborated ethical arguments (3) on resuscitation (4) of EPIs, that is, infants born before 28 weeks of gestation.AnalysisAfter repeated reading of (...) articles, we developed individual summaries, conceptual schemes and an overall conceptual scheme. Ethical arguments and concepts were identified and analysed.ResultsForty articles were included out of 4709 screened. Personhood, best interest, autonomy and justice were concepts grounding the various arguments. Regarding these concepts, included authors agreed that the best interest principle should guide resuscitation decisions, whereas justice seemed the least important concept. The arguments addressed two questions: Should we resuscitate EPIs? Who should decide? Included authors agreed that not all EPIs should be resuscitated but disagreed on what criteria should ground this decision. Overall, included authors agreed that both parents and physicians should contribute to the decision.ConclusionsThe included publications suggest that while the best interest is the main concept guiding resuscitation decisions, justice is the least important. The included authors also agree that both parents and physicians should be actively involved in resuscitation decisions for EPIs. However, our results suggest that parents’ decision should be over-ridden when in contrast with the EPI’s best interest. (shrink)

In this article, the vitality of premature infants will be described and discussed. Vitality was one of the main factors in a grounded theory study in which the aim was to generate knowledge concerning the ethical decision-making processes with which nurses and physicians are faced in a neonatal unit. Which assessments underlie decisions about whether to start, continue or stop medical treatment of very sick premature babies?A descriptive study design, including 120 hours of field observations and 22 qualitative (...) in-depth interviews with doctors and nurses, was chosen. Strauss and Glaser’s comparative method was used to analyse the field observations and interviews.The findings indicate that life-and-death decisions are somewhat ambivalent; experience does not always make them easier. In situations of ambiguity, decisions also seem to be based upon the vitality of the babies concerned. (shrink)

Background: It is not known how neonatologists address the affective and cognitive loads on parents deciding whether to resuscitate infants born extremely preterm. This study explores expert neonatologists' views on these decision-making processes and their own roles in counseling parents. Methods: Semistructured interviews asked internationally recognized experts to share their perspectives on perinatal consultations. Their responses were subjected to thematic analysis. Results: Eighteen of 22 invited experts participated. Approximately equal numbers reported employing a physician-driven approach, a parent-driven approach, and a (...) combined approach during these consultations. Those who followed a physician-driven approach typically focused on conveying standard information about adverse outcomes. Those who followed a parent-driven approach typically focused on addressing parents' information requests, guiding their decision making, and providing affective support. Nearly all experts, in each group, endorsed addressing the child's quality of life, in terms of functionality, when discussing long-term outcomes. Although many believed that families adjusted to life with a disabled child, few discussed the topic during prenatal consultations. Most, in each group, reported trying to alleviate future “decisional regret” for parents whose premature infants subsequently became disabled. None spoke to parents about possible decisional regret after deciding to forgo resuscitation. Conclusions: Expert neonatologists are deeply concerned that parents understand the decision facing them. However, they differ on what information they offer and how they balance parents' need for cognitive and affective support. They expressed more concern about parents' decisional regret should their child survive resuscitation, but have severe disability, than about decisional regret after foregoing resuscitation. (shrink)

In this article, the vitality of premature infants will be described and discussed. Vitality was one of the main factors in a grounded theory study in which the aim was to generate knowledge concerning the ethical decision-making processes with which nurses and physicians are faced in a neonatal unit. Which assessments underlie decisions about whether to start, continue or stop medical treatment of very sick premature babies? A descriptive study design, including 120 hours of field observations and 22 (...) qualitative in-depth interviews with doctors and nurses, was chosen. Strauss and Glaser’s comparative method was used to analyse the field observations and interviews. The findings indicate that life-and-death decisions are somewhat ambivalent; experience does not always make them easier. In situations of ambiguity, decisions also seem to be based upon the vitality of the babies concerned. (shrink)

Parents may experience profound stress when their infant is extremely premature or has exceptionally low birth weight. This article presents several approaches that clinicians and ethics consultants can use to reduce this stress when a parent is single and alone, as well as when both parents are present. Offering parents additional options, taking preventative measures, and using approaches based on recent innovations in psychotherapies are emphasized. Since the clinicians who care for these neonates may find it exceptionally stressful (...) and may experience “burn out,” especially over time, this article also addresses what may work best for them. Finally it will discuss clinicians, who, despite their best efforts, find that caring for these infants is simply too painful to bear. (shrink)

Obstetricians face difficult decisions when the interests of fetus and mother conflict. An example is the problem of choosing the delivery method when labour begins prematurely and the fetus is breech. Vaginal delivery involves risks for the breech fetus of brain damage or death caused by umbilical cord compression and head entrapment. Caesarean section might avoid these dangers but involves risks for the mother, including infection, haemorrhage and even death in a small percentage of cases. If a caesarean section is (...) performed the infant might die anyway, due to complications of prematurity. Thus, decisions about delivery method involve balancing the risks to mother and fetus. Uncertainty about the frequency of fetal injuries in vaginal breech deliveries adds to the difficulty of these decisions. (shrink)

In the last few years there has been intense debate in Italy on administration of life-prolonging treatment to premature babies at the edge of viability. In 2006, a group of experts based in Florence drafted recommendations known as Carta di Firenze (CdF) for responsible use of intensive care for premature infants between 22 and 25 weeks of gestational age (GA). The CdF was later endorsed by several medicoprofessional associations, but was followed by recommendations by the Ministry of Health (...) mandating resuscitation for all premature babies regardless of GA and parental consent. Recent statements from medicoprofessional bodies seem to show that the ‘always resuscitate rule’ is not supported by many Italian doctors. We argue that ethically sensitive issues in medicine should be regulated with, and not against, the medical profession and its representative bodies. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Declining Circumcision for My Premature NewbornDionne DeschenneIn 1993, I was pregnant with my first of three sons and was busy preparing for his arrival. Unlike most parents, who focus much of their time on decorating the nursery and buying supplies, I was researching the medical decisions that I would need to make in the moments and weeks following his birth. Having worked in a hospital while a pre-medicine (...) student, I had heard the cries of babies undergoing tests and procedures shortly after birth and knew I needed to be clear on the necessity of those tests and procedures if I was going to consent to them for my baby.My husband was in the Navy and out to sea for six months, so I took a few college courses to pass the time. One was a philosophy course on ethics, and I chose the bioethics of infant male circumcision as the focal point of my coursework that quarter. This allowed me to work through my findings in a racially, religiously, and age-diverse classroom under the guidance of a skilled professor. I was shocked to learn that even the American Academy of Pediatrics (AAP) at that time acknowledged that there were no known medical benefits that resulted from circumcision. How, I wondered, could parents allow their newborns to undergo such a harrowing experience for no reason?As the months passed and the birth of our first son grew nearer, I had everything ready—all of the decisions made, the doctors prepared, and the hospital selected. All of that preparation went out the proverbial window when I contracted pneumonia at 30 weeks. I was admitted to the Naval Hospital and treated for a week before being airlifted to a nearby Army Hospital when my condition worsened. After a few days there, the doctor came in very early one morning to wake me. Our son's heart rate was slowing, and we were at risk of losing him. They needed to immediately perform an emergency Cesarean section to preserve his life. I was terrified, knowing the potential myriad adverse effects his pre-term birth could cause.We were rushed into the OR and within seconds I had an epidural in my back. Moments later, my perfect, tiny but silent baby was whisked from the room to be attended to by a highly skilled and immensely respected NICU team. My husband followed to keep a watchful eye on our son while I was taken to Recovery. A few hours later, I was allowed to join my husband and son in the NICU.Our baby was beautiful, but so tiny that my husband could hold him in one hand. He weighed four pounds and had an enormous needle in the top of his head. The nurse explained to me that the IV needle was in the best location for administering the IV fluids and medications that our baby needed. His pre-term birth had introduced the need for several tests and treatments I had not anticipated. This was immensely distressing for me as someone who wanted to research and understand so that I could make well-informed and ethical decisions. Keep in mind that this was in the days before smartphones. In fact, we didn't even have cell phones at that time! In order to do research, I needed to find a medical text within the hospital that I could read, or get to a library. I had an abdomen full of staples, couldn't drive, and refused to be away from my baby, so going to the library was not an option.Under the conditions, I relied on the hospital staff to help me understand the risks, benefits, and necessities of each procedure or test that they recommended. We formed a relationship of mutual respect. I think this was due to the in-depth [End Page 89] conversations we had during that time. That mutual respect we developed likely led to a remarkable conversation toward the end of our son's first week in the NICU. Our doctor was making his rounds when a nurse asked if we wanted to have our son circumcised that day since the doctor... (shrink)

Abortion is permitted in many jurisdictions after the age at which an infant is viable on the basis of intensive neonatal care techniques. Does this cause special concerns for those involved in perinatal care and termination of pregnancy services or is the overlap mainly an abstract issue fretted over by ethicists and academics? In order to explore this question, a group of clinicians involved in this area of care were interviewed and their interviews analysed using qualitative measures. The clinicians (...) concerned were exercised by the ethical issues and had various ways of resolving them which tended to reflect a gradualist, multifaceted and, to some extent, particularist approach to ethical decision-making in relation to the edges of human life. The ways in which those strands of ethical thought are instanced in the interview material are reported and discussed. (shrink)

It is often pointed out that one cannot be “a little bit pregnant,” but pregnancy’s borders are no longer so crisp. At Children’s Hospital of Philadelphia, scientists have created an artificial womb in which “extremely premature” lambs were nurtured for four weeks, enough to make them ready to meet the world. The goal is to advance this technology until it is available for very premature human infants. At present, we put preemies into neonatal intensive care units, which are (...) extremely stressful for the babies and their families, and the things we do to try to support them often cause serious damage. If successful, the artificial womb could be a terrific technology. The implications are remarkable. Would humans become somewhat like marsupials? Now, one is either born or not. Would this technology create a new, intermediate stage? What would this mean ethically and legally? (shrink)

Low birth weight, intrauterine growth retardation, and prematurity are overwhelming risk factors associated with infant mortality and morbidity. The lack of efficacious prenatal screening tests for these three outcomes illuminates the problems inherent in bivariate estimates of association. A biocultural strategy for research is presented, integrating societal and familial levels of analysis with the metabolic, immune, vascular, and neuroendocrine systems of the body. Policy decisions, it is argued, need to be based on this type of biocultural information in order (...) to impact the difficult-to-change problems of low birth weight, intrauterine growth retardation, and prematurity. (shrink)

The dramatic increases in the survival rate of prematurely born, very low birth weight infants (<1500 g) have created concern about the possible sequelae experienced by these children, in terms of both severe problems and less severe learning and behavior problems. The methodological difficulties involved in answering questions about the outcomes of these children, including the choice of appropriate outcome measures, the analysis of individual variation, the problems associated with dropouts, the relevant comparison groups, the importance of survival rate, and (...) the question of correcting for the degree of prematurity, are considered. In spite of the difficulties in interpreting the studies, the research indicates that many premature children have learning disabilities, particularly in the perceptual and visual motor functioning and some aspects of language and reading. In addition, ethical issues related to prematurity are discussed, including parents’ rights, decision-making, and cost and treatment. Finally, some solutions are proposed involving the use of risk indices for the early detection of developmental problems. (shrink)

Professional statements guide neonatal resuscitation thresholds at the border of viability. A 2015 systematic review of international guidelines by Guillen et al. found considerable variability between statements’ clinical recommendations for infants at 23–24 weeks gestational age (GA). The authors concluded that differences in the type of data included were one potential source for differing resuscitation thresholds within this “ethical gray zone.” How statements present ethical considerations that support their recommendations, and how this may account for variability, has not been as (...) rigorously explored. We performed a mixed-methods exploratory analysis of 25 current international guidelines for neonatal resuscitation at 22+0−25+0 weeks GA. Qualitative analysis using a modified grounded theory yielded 34 distinct codes, eight categories, and four overarching themes. Three themes, consequentialism, principlism, and rights-based, consisted of concepts central to these ethical frameworks. The fourth theme, clinical reasoning, described counseling practices, medical management, outcomes data, and prognostic uncertainty, without any ethical context. The theme of clinical reasoning appeared in 22 of 25 guidelines. Ten guidelines lacked any ethical theme. Guidelines with an identified ethical theme were more likely to recommend comfort care than guidelines without an identified ethical theme, and recommended it at a higher average GA (22.7 weeks vs. 22.0 weeks, p = 0.03). Thus, how ethical concepts are incorporated into guidelines potentially impacts resuscitation thresholds. We argue that inclusion of explicit discussion of ethical considerations surrounding resuscitation in the “gray zone” would clarify values that inform recommendations and facilitate discussions about how neonatology ought to approach periviability as outcomes continue to evolve. (shrink)

Postpartum depression is more prevalent in mothers and fathers of preterm infants compared to parents of full-term infants and may have long-term detrimental consequences for parental mental health and child development. The temperamental profile of an infant has been postulated as one of the important factors associated with parental depressiveness in the first months postpartum. This study aimed to examine the longitudinal relationship between depressive symptoms and perceived infant temperament at 3 months corrected age, and depressive symptoms at (...) 6 months corrected age among mothers and fathers of infants born preterm. We assessed 59 families with infants born before the 34th gestational week using the Edinburgh Postnatal Depression Scale and the Infant Behavior Questionnaire-Revised. We found that mothers’ scores on EPDS and infants’ Orienting/regulation at 3 months corrected age predicted mothers’ EPDS scores at 6 months corrected age. In particular, higher depressive scores were related to higher depressive symptoms at 6 months corrected age, whereas higher infant Orienting/regulation was related to lower depressive symptoms at 6 months corrected age. Due to the low internal consistency of EPDS at 6 months for fathers, we were unable to conduct similar analyses for fathers. Our results point to the importance of considering both early indices of maternal mood as well as mother-reported measures of preterm infant temperament in the attempts to predict levels of maternal depressiveness in later months of an infant’s life. Further studies are urgently needed in order to better understand the associations between depressiveness and infant temperament in fathers, and with more consideration for the severity of the effects of infant prematurity. (shrink)

“Ethical dilemmas…are rarely simple and stark but are, instead, multifaceted, complex, and gut wrenching for parents and care givers alike.” This is never more the case than when one must treat vulnerable babies who are not, nor ever can be competent to offer us some guidance about that treatment. The ethical problems are heightened when the parents, or the single mother, are incompetent to make decisions themselves, for example, because of drug addiction. In such cases, when the baby is (...) class='Hi'>premature and suffering the effects of the drugs the mother has taken, and the mother herself is either no longer available for consultation or so damaged by her own addiction that she is not a reliable decisionmaker, the usual trend In the United States is to initiate treatment and continue until it is virtually certain that the infant will die. (shrink)

Neoclassical economics assumes that individuals have stable and context-independent preferences, and uses preference satisfaction as a normative criterion. By calling this assumption into question, behavioural findings cause fundamental problems for normative economics. A common response to these problems is to treat deviations from conventional rational choice theory as mistakes, and to try to reconstruct the preferences that individuals would have acted on, had they reasoned correctly. We argue that this preference purification approach implicitly uses a dualistic model of the human (...) being, in which an inner rational agent is trapped in an outer psychological shell. This model is psychologically and philosophically problematic. (shrink)

El presente trabajo aborda el concepto de Transmodernidad bajo dos puntos de vista diferentes. Por un lado, la mirada de Rosa María Rodríguez Magda, la cual nos plantea la Transmodernidad como una tríada dialéctica entre Modernidad-Postmodernidad-Transmodernidad, siendo esta última tanto una continuación como una superación de la Postmodernidad. El otro punto de vista corresponde a Enrique Dussel, el cual nos plantea la Transmodernidad como un proyecto utópico que es transversal a la Modernidad/Postmodernidad; está antes de la Modernidad y a la (...) vez la trasciende, siendo una categoría de exterioridad que pretende sacar la voz propia de las culturas no europeo-norteamericanas, para así poder establecer diálogos interculturales simétricos que llevan consigo características de la propia cultura inconmensurables al proyecto moderno europeo. Así enfrentamos ambas concepciones de la Transmodernidad para destacar sus diferencias y contraposiciones. (shrink)

This note replies to a comment by Daniel Hausman on our paper ‘Preference purification and the inner rational agent: a critique of the conventional wisdom of behavioural welfare economics’. We clarify our characterisation of behavioural welfare economics and acknowledge that Hausman does fully endorse this approach. However, we argue that Hausman’s response to our critique, like behavioural welfare economics itself, implicitly uses a model of an inner rational agent.

Este escrito tiene como objetivo describir los principales enunciados que gravitaron a la hora de analizar el contenido de varias obras literarias que describían sucesos propios del siglo XX en Colombia. Esto con el fin de reconocer las representaciones, las prácticas y los sentidos de la sociedad a lo largo del siglo, así pues, el artículo está orientado en gran medida a responder a la posibilidad de poner en diálogo el estudio de la corriente historiográfica de la historia cultural y (...) su relación con la literatura. (shrink)

After viral entry into the cell, the nuclear envelope poses a major cellular barrier that needs to be overcome upon adaptation of highly pathogenic avian influenza viruses (HPAIV) to the new host. To ensure efficient viral transcription and replication in the nucleus of the host cell, the viral polymerase complex of avian influenza viruses needs to switch from recognition of avian to mammalian components of the nuclear import machinery. Recent evidence suggests that influenza viruses have evolved different mechanisms to utilize (...) importin‐α isoforms as components of this machinery, bridging pre‐ and post‐nuclear import on both sides of the nuclear envelope. (shrink)

Ernst Bloch's work reflects on the revolution and the need to take advantage of cultural legacy content with an emancipatory sense. In Heritage of our times, written during the period of the Weimar Republic, the author places special emphasis on three aspects of cultural heritage to reconsider. Namely: the genuine concept of the Third Reich, the epic theater of Brecht and expressionism. This article examines the three mentioned aspects of reconsideration of heritage by Bloch. La obra de Ernst Bloch reflexiona (...) sobre la revolución y la necesidad de aprovechar contenidos del legado cultural emancipadoramente. En Herencia de esta época, texto escrito durante el periodo de la República de Weimar, el autor incide en tres aspectos de la herencia cultural a reconsiderar. A saber: el concepto genuino de Tercer Reich, el teatro épico de Brecht y el expresionismo. Este artículo examina los tres citados focos de reconsideración del concepto de herencia por parte de Bloch. La obra de Ernst Bloch reflexiona en torno a la revolución y a la necesidad de aprovechar contenidos del legado cultural con un sentido emancipador. En Herencia de esta época, escrito llevado a cabo durante el periodo de la República de Weimar, el autor hace especial hincapié en tres aspectos de la herencia cultural a reconsiderar. A saber: el concepto genuino de Tercer Reich, el teatro épico de Brecht y el expresionismo. Este artículo examina los tres citados focos de reconsideración de la herencia por parte de Bloch. (shrink)

Abstract:This essay performs an anticolonial and poetic methodology of combining Black and Native feminists' deconstruction of metaphor and metaphysics in order to argue for the centrality of colonial metaphor to colonial metaphysics. I combine their analyses of the separate gendered metaphors of Blackness and Indianness and the centrality of these metaphors to the development of a global metaphysics as well as the transference of the terms of metaphysics to whiteness. I then apply this method of combined terms and readings to (...) white colonial writing that compares Black and Native America, which transforms both communities not only into individually potent, gendered metaphors but into an essential poetic pairing, a poetic couplet. Drawing on the work of Black and Native feminists, I further argue that when we take this paired model to evaluate the political concerns of Black and Native America, we come to a more complete and global understanding and refutation of whiteness. The creation, connection, and comparison of the gendered metaphors and archetypical figures of the "African Slave" and "Indian Savage" are important to each other and to the creation of a Western conception of the globe. Colonialism uses gender to compound metaphor's ability to create, by combining metaphors of gender with metaphors of race and colonialism to develop new symbolic amalgamations. This gestalt of metaphors comes together in order to create a fictive European metaphysics used to ameliorate white fears of the diversity of life on planet Earth and to satisfy white desires to control it. In this coupled metaphoric form, Blackness and Indianness are not connected by analogy but by the open-ended cut, the caesura, of poetry and the violence of slavery and conquest. I offer this anticolonial and poetic pairing as a model for political imagining between Black and Native theory. (shrink)

We examine the expressive power of probabilistic context free grammars (PCFGs), with a special focus on the use of probabilities as a mechanism for reducing ambiguity by filtering out unwanted parses. Probabilities in PCFGs induce an ordering relation among the set of trees that yield a given input sentence. PCFG parsers return the trees bearing the maximum probability for a given sentence, discarding all other possible trees. This mechanism is naturally viewed as a way of defining a new class of (...) tree languages. We formalize the tree language thus defined, study its expressive power, and show that the latter is beyond context freeness. While the increased expressive power offered by PCFGs helps to reduce ambiguity, we show that, in general, it cannot be decided whether a PCFG removes all ambiguities. (shrink)

We examine the expressive power of probabilistic context free grammars (PCFGs), with a special focus on the use of probabilities as a mechanism for reducing ambiguity by filtering out unwanted parses. Probabilities in PCFGs induce an ordering relation among the set of trees that yield a given input sentence. PCFG parsers return the trees bearing the maximum probability for a given sentence, discarding all other possible trees. This mechanism is naturally viewed as a way of defining a new class of (...) tree languages. We formalize the tree language thus defined, study its expressive power, and show that the latter is beyond context freeness. While the increased expressive power offered by PCFGs helps to reduce ambiguity, we show that, in general, it cannot be decided whether a PCFG removes all ambiguities. (shrink)