Viability and thresholds for treatment of extremely preterm infants: survey of UK neonatal professionals.

BACKGROUND: Decisions about treatments for extremely preterm infants (EPIs) born in the 'grey zone' of viability can be ethically complex. This 2020 survey aimed to determine views of UK neonatal staff about thresholds for treatment of EPIs given a recently revised national Framework for Practice from the British Association of Perinatal Medicine. METHODS: The online survey requested participants indicate the lowest gestation at which they would be willing to offer active treatment and the highest gestation at which they would withhold active treatment of an EPI at parental request (their lower and upper thresholds). Relative risks were used to compare respondents' views based on profession and neonatal unit designation. Further questions explored respondents' conceptual understanding of viability. RESULTS: 336 respondents included 167 consultants, 127 registrars/fellows and 42 advanced neonatal nurse practitioners (ANNPs). Respondents reported a median grey zone for neonatal resuscitation between 22+1 and 24+0 weeks' gestation. Registrars/fellows were more likely to select a lower threshold at 22+0 weeks compared with consultants (Relative Risk (RR)=1.37 (95% CI 1.07 to 1.74)) and ANNPs (RR=2.68 (95% CI 1.42 to 5.06)). Those working in neonatal intensive care units compared with other units were also more likely to offer active treatment at 22+0 weeks (RR=1.86 (95% CI 1.18 to 2.94)). Most participants understood a fetus/newborn to be 'viable' if it was possible to survive, regardless of disability, with medical interventions accessible to the treating team. CONCLUSION: Compared with previous studies, we found a shift in the reported lower threshold for resuscitation in the UK, with greater acceptance of active treatment for infants <23 weeks' gestation.

Dignity: The Cornerstone of Nursing Care Among Hospitalized Mothers of Infants in Neonatal Intensive Care Unit.

: One of the most important areas of nursing care delivery is "dignity." Because of the increase in hospitalized infants in neonatal intensive care units in recent years, this has led to an increased focus on "family care and maternal dignity." Given the importance of understanding the phenomenon of maternal dignity in order to improve cooperation in the care of their infants and promote family-centered care, this study aims to describe the lived experience of hospitalized mothers of infants within the context of dignity. This is a descriptive phenomenological qualitative research study. Twenty mothers were invited to participate in this study using purposeful sampling. The data were generated through individual, semistructured interviews and field notes were developed during the interviews. Data were analyzed using the Colaizzi method.Findings of the study were presented in 3 themes: "privacy," "respecting individual identity," and "authority," and 7 additional subthemes. Mothers in this study needed to take care of their infants in an environment where their personal privacy is preserved, their individual identity is respected, and they have sufficient authority in obtaining medical decisions. It is essential that healthcare teams and policy makers of health organizations provide an appropriate supportive environment in terms of promoting mothers' dignity in different dimensions and subsequently improving family-centered care.

The Dilemma of Daily Physical Examination in the NICU.

Babies in the NICU should be managed in a neurodevelopment-friendly environment. Frequent handling by multiple examiners potentially increases the risk of cross infection. Interruption in kangaroo care is not advisable unless urgent. A minimum of three-point exam should be done (chest, heart, and abdomen) using a stethoscope and gentle palpation. However, the infant should not be wakened from sleep and all handling should be synchronized with the touch time.

Does It Matter if This Baby Is 22 or 23 Weeks?

A 530-g girl born at 22 weeks and 6 days' gestation (determined by an ultrasound at 11 weeks) was admitted to the NICU. Her mother had received prenatal steroids. At 12 hours of age, she was stable on low ventilator settings. Her blood pressure was fine. Her urine output was good. After counseling, her parents voiced understanding of the risks and wanted all available life-supporting measures. Many nurses were distressed that doctors were trying to save a "22-weeker." In the past, 4 infants born at 22 weeks' gestation had been admitted to that NICU, and all had died. The attending physician on call had to deal with many sick infants and the nurses' moral distress.

The ethical justification for inclusion of neonates in pragmatic randomized clinical trials for emergency newborn care.

BACKGROUND: Research guidelines generally recognize vulnerable populations to include neonates with the aim of enhancing protections from harm. In practice, such guidance results in limiting participation in randomized clinical trials (RCTs). Yet while medical care of neonates should be based on best research evidence to ensure that safe, efficacious treatment or procedures are used, this seldom happens in contemporary practice. DISCUSSION: The compelling need to generate information on effectiveness and safety of procedures and medications that are already in use during neonatal care has led to increase in calls for pragmatic randomized clinical trials (PCTs). This raises ethical concerns as to whether exclusion of the vulnerable populations from research participations constitutes harm. First, neonates are denied access to both potentially beneficial research outputs and an opportunity to generate data on how interventions or medications perform in diverse clinical settings and inform clinical decision-making. Secondly, risks and harms in PCTs may differ from traditional RCTs, and can be reduced by modifications in study designs. The latter may involve assessment of effectiveness of comparable medication, devices or practices (whose safety data is available), randomization at the group level rather than at the individual level, avoidance of invasive and innovative study procedures, reliance on locally available data on relevant patient outcomes, and employment of procedures that tend to meet the criteria of minimal risk for human subject research. Thirdly, informed consent procedures should be modified from those of traditional RCTs, as neonates in traditional RCTs may be vulnerable to different extents in PCTs. Lastly, regulatory and oversight procedures designed for traditional RCT settings need modification, as they may not be translatable, feasible, appropriate or even ethical to apply in PCTs. CONCLUSION: The principle of justice, commonly interpreted as preventing an inequitable burden of research, should also allow fair access to potential benefits from PCTs for neonates and other vulnerable populations. Under certain conditions, prospective randomized trials involving neonates should be ethically permissible to allow inclusion of neonates in research. This may require modification of the research design, consent procedures or regulations for research oversight.

Ética e estética do cuidado nos primórdios da vida: reinventando a prática cotidiana com bebês numa unidade de acolhimento / Ethics and aesthetics of care in the early days of life: reinventing everyday practice with babies in a care unit

Esta tese é resultado de uma pesquisa-intervenção realizada na Zona Sul da cidade do Rio de Janeiro, em uma Unidade de Acolhimento para bebês entre 0 e 36 meses. Nesse contexto, analisei a importância de uma ética do cuidado em relação à primeiríssima infância, o que significou incluir no estudo o profissional cuidador e a instituição que une os atores, bebês e adultos. Também investiguei a qualidade do cuidado ofertado aos bebês no berçário desse abrigo municipal, exatamente no momento em que os gestores desejavam realizar uma mudança estrutural na dinâmica do trabalho das educadoras sociais. O estudo constou de três passos metodológicos e práticos. Em primeiro lugar, a modificação paradigmática do modo de cuidar foi sendo construída ao longo do tempo, tendo amparo num coletivo denominado Roda de Conversa, quando se passou a falar sobre os problemas enfrentados no cotidiano, especialmente sobre a relação com os bebês e os familiares. As comunicações foram convergindo no sentido de que o bebê precisava de uma relação de referência que lhe assegurasse uma atenção recíproca e amorosa. A partir da interlocução entre a psicanálise e a abordagem Pikler, foi discutido no trabalho um modelo de intervenção que visava favorecer tanto a constituição psíquica dos bebês quanto o cuidado com o cuidador. Para isso, foi ofertado às educadoras, nesse primeiro momento, o referido espaço de fala onde se processavam as angústias que a atividade de cuidar suscita e onde havia uma mútua apropriação das sutilezas da função que elas exercem. Num segundo momento, a pesquisa passou a ser desenvolvida no berçário da instituição e focou-se, de um lado, na observação das relações cotidianas de cuidado entre adultos e crianças, sendo inspirada no método de observação da psicanalista Esther Bick; de outro, nas narrativas das educadoras que foram selecionadas para serem acompanhadas em profundidade e que participaram de uma conversa com a pesquisadora, ao final de cada observação. Essa última atividade se fundamentou na construção clínica da intervenção a tempo e da abordagem da psicossociologia francesa. Num terceiro momento, a equipe técnica foi entrevistada, de forma aberta e sem um instrumento de condução da fala, sobre as relações internas e externas de cada uma. O objetivo foi compreender de que modo essas pessoas, responsáveis institucionais, viam a dinâmica de seu trabalho e a forma como o exerciam, considerando que as dimensões sociais, individuais, subjetivas, intersubjetivas, conscientes e inconscientes, imaginárias e simbólicas nas instituições produzem efeitos na qualidade do que é produzido. Dessa forma, estão no centro da investigação as relações intersubjetivas e seus efeitos nas relações de cuidado, tendo como eixo teórico os trabalhos desenvolvidos por B. Golse e D. Stern sobre os primórdios da subjetivação, assim como o modelo metapsicológico proposto por Winnicott sobre as relações iniciais cuidador/bebê, a teoria psicanalítica sobre os processos intersubjetivos/grupais, a psicodinâmica do trabalho e a abordagem psicossociológica francesa. Considerando as funções do cuidado como um eixo primordial para o processo de subjetivação dos bebês e para o desenvolvimento da capacidade da educadora de estabelecer vínculos de qualidade com os pequenos, o trabalho destacou as dimensões sensíveis do bebê e do adulto, e a necessidade de as instituições considerarem esses elementos invisíveis como veículo para o processo de humanização de todos. Concluo que esse estudo corrobora para o entendimento de que, para um trabalho de qualidade no âmbito do cuidado com bebês aconteça é fundamental que o cuidador tenha a capacidade de se autorregular emocionalmente e de cuidar de si. Para isso, exemplarmente, nesse tempo da pesquisa, as educadoras e a equipe técnica produziram um espaço para a invenção de si e do mundo ao qual pertencem

This thesis is the result of an intervention research conducted in Zona Sul, the southern part of the city of Rio de Janeiro, in a care unit for babies between 0 and 36 months. In this context, I analyzed the importance of an ethics of care in relation to the very first childhood, which meant to include in the study the professional caregiver and the institution that unites the actors, babies and adults. I also investigated the quality of care offered to the babies in the nursery of this municipal shelter, just at the moment when managers wanted to make a structural change in the work dynamics of social educators. The study consisted of three methodological and practical steps. In the first place, the paradigmatic modification of the way of caring was built over time, taking shelter in a collective called Wheel of Talk when it came to talk about the problems faced in the daily life, especially on the relationship with babies and relatives. The communications were converging in the sense that the baby needed a reference relationship that would ensure mutual and loving attention. From the interplay between psychoanalysis and the Pikler approach, an intervention model was discussed in the work that aimed to favor both the psychic constitution of the babies and the care of the caregiver. To this end, it was offered to the educators, at that first moment, the said space of speech where the anxieties that the activity of caring aroused were processed and where there was a mutual appropriation of the subtleties of the function that they exercised. Secondly, the research began to be developed in the nursery of the institution and focused, on the one hand, on the observation of the daily relations of care between adults and children, being inspired by the method of observation of the psychoanalyst Esther Bick; on the other, in the narratives of the educators who were selected to be followed in depth and who participated in a conversation with the researcher at the end of each observation. This last activity was based on the clinical construction of the intervention in time and the approach of French psychosociology. In a third moment, the technical team was interviewed, openly and without an instrument of speech, on the internal and external relations of each one. The objective was to understand how these people, as institutional leaders, saw the dynamics of their work and how they exercised it, considering that the social, individual, subjective, intersubjective, conscious and unconscious, imaginary and symbolic dimensions in institutions produce effects on quality of what is produced. In this way, intersubjective relations and their effects on care relationships are at the heart of the research, with the work of B. Golse and D. Stern on the origins of subjectivation as the theoretical axis. As was emphasized in the metapsychological model proposed by Winnicott on the initial carer / baby relations, the psychoanalytic theory on intersubjective / group processes, work psychodynamics and the French psycho-sociological approach. Considering the functions of care as a primordial axis for the process of subjectivation of the babies and for the development of the educator's ability to establish quality bonds with the small ones, the work highlighted the sensitive dimensions of the baby and the adult, and the need for the institutions to consider these invisible elements as a vehicle for the humanization process of all. I conclude that this study corroborates the understanding that for a quality work in the field of baby care to happen it is fundamental that the caregiver has the ability to self-regulate emotionally and to take care of itself. For this, in this time of research, the educators and the technical team have produced a space for the invention of themselves and of the world to which they belong.

Universality claim of attachment theory: Children's socioemotional development across cultures.

The first part of this paper reviews the basic tenets of attachment theory with respect to differences in cultural socialization strategies. In one strategy infants have the lead, and the social environment is responsive to the infant's wishes and preferences. In another strategy the caregivers-children or adults-are experts who know what is best for a baby without exploring his or her mental states. Accordingly, the definition of attachment is conceived as a negotiable emotional bond or a network of responsibilities. Attachment theory represents the Western middle-class perspective, ignoring the caregiving values and practices in the majority of the world. However, attachment theory claims universality in all its components. Since the claim of universality implies moral judgments about good and bad parenting, ethical questions need to be addressed. These issues are discussed in the second part of the paper. It is first demonstrated that sensitive responsiveness in attachment theory is built on a different concept of the person and self than concepts of good caregiving in many rural subsistence-based farming families. Evaluating one system with the standards of another ignores different realities and different value systems. The common practice of large-scale interventions in rural subsistence-based contexts promoting Western-style parenting strategies without knowing the local culture positions a false understanding of scientific evidence against cultural knowledge. This practice is unethical. Diversity needs to be recognized as the human condition, and the recognition of diversity is an obligation for better science as well as for improving people's lives.

The Swedish Approach to Management of Extreme Prematurity at the Borderline of Viability: A Historical and Ethical Perspective.

Sweden has a long tradition of being at the forefront of the management of extremely preterm infants. In this article, we explore the historical background, ethical discussions, and evidence from national surveys combined with data from quality registers that form the background of the current Swedish guidelines for the care of extremely preterm infants. The current Swedish national guidelines suggest providing active care for preterm infants from 23 weeks' gestation and considering active care from 22 weeks' gestation. The survival of infants in gestational weeks 22 and 23 has increased and now exceed 50% and 60%, respectively; importantly, the Swedish proactive approach to care at the border of viability has not resulted in an increased proportion of functional impairment among survivors.

Should Parents of Neonates With Bleak Prognosis Be Encouraged to Opt for Another Child With Better Odds? On the Notion of Moral Replaceability.

The notion of moral exchangeability is scrutinized and its proper place in neonatal care is examined. On influential moral outlooks, the neonate is morally exchangeable. On these views, if the parents are prepared to let go of the neonate with a poor prognosis and opt instead for another child who is healthy, this may be the morally right thing for them to do, and neonatal care ought to ease their choice. The notion of moral exchangeability has a different place in different moral theories. Three theories are examined: deontological ethics (insisting on the sanctity of innocent human life), according to which there is no place for the replacement of 1 child for another. It is different, however, with utilitarianism and in the moral rights theory based on self-ownership. According to utilitarianism, we are all replaceable. According to the moral rights theory, neonates are replaceable to the extent that they have not developed personhood. Even a deontological ethicist of a Kantian bent would concur here with the moral rights theory. Because influential moral theories imply that the neonate is morally exchangeable, it is reasonable within neonatal care, as a general rule, to grant the parents a veto against any attempts to save a child with a poor prognosis. In particular, if the parents are prepared instead to have another, healthy child, this is to be recommended. However, this rule cannot be strict. In rare cases, it is necessary to yield to parents who insist that their neonate be saved despite a poor prognosis.

A Clinical Careography: Steering Life-and-death Decisions Through Care.

OBJECTIVES: In many Euro-American societies, the ideal of patient and family involvement in clinical decision-making prevails. This ideal exists alongside the doctor's obligation and responsibility to make decisions and to be accountable for them. In this article, we explore how medical staff navigate the tension between autonomy and authority when engaging life-and-death decision-making in a Danish NICU. METHODS: The study rests on ethnographic fieldwork in a Danish NICU, involving participant observations in everyday care and decision-making work and semistructured interviews with staff and parents. All interviews were taped and transcribed. The empirical material was analyzed using thematic coding and validated in discussions with staff, parents, and social scientists. RESULTS: Decisions are relational. Multiple moves, spaces, temporalities, and actors are involved in life-and-death decisions in the NICU. Therefore, the concept of medical decision-making fails to do justice to the complex efforts of moving infants in or out of life. Yet, many of these decision-making moments are staged, timed, and coordinated by medical staff. Therefore, we introduce an alternative vocabulary for talking about life-and-death decision-making in neonatology to help us attend to the moral stakes, the emotional tenor, and the fine-grained mechanisms of authority implied in such decisions around tiny infants. CONCLUSIONS: We conceptualize decisions as an art of "careography." Careography is the work of aligning care for the infant, care for the parents, care for staff, care for other infants, and care for society at large, in the process of deciding whether it is best to continue or withdraw life support.

In the Best Interest of the. . .Parents: Norwegian Health Personnel on the Proper Role of Parents in Neonatal Decision-making.

OBJECTIVES: The role of parents in life-and-death decision-making for infants born at the border of viability is challenging. Some argue that parents should have the final say in decisions about life-sustaining treatment. Others disagree. In this article, we report views from health care personnel (HCP) on the appropriate parental role. METHODS: Focus group interviews with 5 different groups of HCP (neonatal nurses, midwifes, obstetricians, mother-fetal specialists, and neonatologists) dealing with life-and-death decisions throughout pregnancy and birth were performed at the Norwegian University of Science and Technology and at St Olav's Hospital in Trondheim, Norway in 2014-2017. Interviews were taped and transcribed. Inductive analysis was performed for each group discussion for emergent ethical themes. A summary of the transcribed discussion was sent to the relevant focus group participants for comments. RESULTS: Our participants felt strongly that doctors, not parents, should have the final say. They did not think parents should have to live with the burden of the decision. The possible disagreement between parents, lack of necessary knowledge, experience, time, and emotional stability all point toward the neonatologist as the optimal decision-maker, within a model of "Patient Preference-Satisfaction Paternalism." CONCLUSIONS: The general attitude of our groups was that parents should have a say and be included in a thorough information and decision-making process. The doctor, or a team of HCP, however, should make the final decision, being in the best position both epistemologically and normatively to promote the best interest of both parents and the child.

Justified by What? Three Ways to Provide an Ethical Basis for Neonatal Policies.

In this article, I identify 3 ways of justifying neonatal policies of when to provide life-saving treatment to infants who were born extremely premature: by appealing to universal principles or rights, to considerations of the best interests of the children, or to considerations of the best interests of the families. I go on to show how each of these justifications can be used to characterize the discourse on neonatal policies in 1 of the Scandinavian countries.

From Prenatal Diagnosis to Preterm Infants: A Cultural Guide to Understand Scandinavian Variation.

The Scandinavian neighbors, Denmark, Sweden, and Norway, are 3 similar countries. Still, the practice and the policy on extreme premature infants are different in each of them. Why is this so? In this article, I will try to show that the differences are not primarily a result of individual disagreement among leading doctors in the 3 countries but has a cultural explanation. I compare the policies on preterm infants with a nearby one, that of prenatal diagnosis. It seems clear that the policies and practices reflect distinct features in the mentality and values of each nation. Context matters, even in situations that at first glance appear as identical. Variation in neonatal practice and policies between countries is not necessarily bad, because the cultural context is part of the moral situation in which doctors and parents decide.

Ethical decision-making regarding infant viability: A discussion.

BACKGROUND:: There are no universally agreed rules of healthcare ethics. Ethical decisions and standards tend to be linked to professional codes of practice when dealing with complex issues. OBJECTIVES:: This paper aims to explore the ethical complexities on who should decide to give infants born on the borderline of viability lifesaving treatment, parents or the healthcare professionals. METHOD:: The paper is a discussion using the principles of ethics, professional codes of practice from the UK, Nursing Midwifery Council and UK legal case law and statute. Healthcare professionals' experiences that influence parental decision are also considered. FINDINGS & DISCUSSION:: There are considerable barriers to an effective discussion taking place in an environment where clinical decisions have to be made quickly once the baby is born. This is compounded by the need and respect for parental autonomy and the difficulties they face when making a best interest's decision knowing that this could cause more harm than good for their infant child and balancing any decision they make with quality of life. CONCLUSION:: On deciding whether to give lifesaving treatment born at the borderline of viability, it should be a joint decision between the parents and the neonatal team.

[Nutrition and Hydration in Newborns: Limiting Treatment Decisions]. / Hidratación y Alimentación en los Recién Nacidos: Adecuación del Esfuerzo Terapéutico.

Artificial hydration and nutrition are key elements in the treatment in Neonatal Units, especially in premature babies. It has led to improved survival and better clinical outcomes. Artificial nutrition is considered a medical treatment and, in such a way, a balance between burdens and benefits should be taken into consideration. Nevertheless decisions on withholding or withdrawing artificial nutrition and hydration have special and emotional considerations. In premature babies it is also necessary to consider than below the 34th week of gestational age, effective suckling is not present, and so, oral nutrition is not a possibility. Decisions regarding the end-of-life care of neonates should be made taking into account clinical facts but also values and beliefs of all concerned, and always ″in the best interest″ of infants. In order to consider all this aspects, we could respect withdrawing or withholding artificial nutrition and hydration in those babies with an ominous prognosis in a short term basis. It has not the same consideration if there is a clear life risk but a prognosis based on severe future burden, mainly because of neurologic damage. In those cases withholding or withdrawing fluids and feedings would be the direct cause of death.

The ethics of circumcision of male infants.

Infant circumcision has recently attracted controversy with professional groups recommending it and various individuals trying to criminalize it. Circumcision is beneficial in the prevention of certain diseases, causing minimal tangible harm to those circumcised. This article argues that government should affirmatively adopt policies tolerating minority practices. Such activities should be banned only if they cause substantial damage to society or its members, or if they engender risks or injuries to which no reasonable person would consent. The benefits and risks of circumcision are outlined. Circumcision of male infants does not trigger cause for government to abolish it, and should be permitted if parents desire it. This article also summarizes common arguments against circumcision and attempts to refute them. These arguments are based on a desire for gender equality as well as a belief that minors should not undergo elective bodily alteration. If there are no unusual risks, parents can ethically authorize, and physicians ethically perform, elective infant circumcision for prophylaxis of disease, ritual purposes, or aesthetic reasons. Furthermore, the state should permit this.