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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., Competing Interests: Competing interests: DW, HM and SEB were part of British Association of Perinatal Medicine working group that developed the 2019 Framework for Practice., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.)

: 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.

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., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2019 by the American Academy of Pediatrics.)

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.

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., (© Copyright 2019 Springer Publishing Company, LLC.)

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., Competing Interests: The author declares no conflict of interest.

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.

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., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

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., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

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., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

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., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

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., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

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., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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.

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.

The care of healthy newborn during their stay in health centres is not usually a problem and there are few conflicts in the relationship with the family. Conflicts may arise because the parents do not accept the care or care routines that health professionals provide. They believe that the newborn does not require testing or prophylactic measures, such as administration of vitamin K, or puncture to obtain a blood sample for newborn screening. This is because the information they have is not adequate, or because they reject some measures as they are invasive and that from their point of view, do not correspond to the care of a healthy newborn. This document seeks to reconcile the values of family and participation in the care of their child, the rights of the newborn, and the values of health professionals. It is based on adequate information, a good clinical relationship, and discussion in case of discrepancies that can lead to changes in some procedures that are not essential in the care of the newborn., (Copyright © 2012 Asociación Española de Pediatría. Published by Elsevier Espana. All rights reserved.)

Recommendations advising against mothers and their infants sharing a bed during sleep (bedsharing) have sparked heated debate in recent years, the effects of which are that bedsharing is now most often only considered in the polarised contexts of being either 'the norm' or 'inherently unsafe'. This has resulted in significant tensions between supporters of bedsharing and public health bodies who seek to eliminate the risks associated with SIDS. This paper considers the issues surrounding this debate by examining the evidence associated with bedsharing, SIDS and breastfeeding. This is undertaken using Baum's six-step framework for analysing potential ethical tensions in public health policy, which includes the principles of utility, evidence base and effectiveness of action, fairness, accountability, costs and burdens, and community acceptance. This framework has allowed us to examine the competing principles involved in the bedsharing and breastfeeding debate, and arrive at a position constructed using ethical considerations.

Wet nursing was widely practiced from antiquity. For the wealthy, it was a way to overcome the burdens of breastfeeding and increase the number of offspring. For the poor, it was an organized industry ensuring regular payment, and in some parishes the major source of income. The abuse of wet nursing, especially the taking in of several nurslings, prompted legislation which became the basis of public health laws in the second half of the 19th century. The qualifications demanded from a mercenary nurse codified by Soran in the 2nd century CE remained unchanged for 1,700 years. When artificial feeding lost its threat thanks to sewage disposal, improved plumbing, the introduction of rubber teats, cooling facilities and commercial formula, wet nursing declined towards the end of the 19th century., (Copyright © 2012 S. Karger AG, Basel.)

Many advances have occurred in clinical medicine in the last decades. Solid organ transplants, corrective surgery for congenital malformations, improved cytostatic regimes for children with cancer, and respiratory care for premature infants are but a few examples of the changing face of medical practice. Such changes have added years to life. But along the way many patients have paid a price, both in terms of loss of life and of added suffering. Even today, some survivors are faced with a life of impairment and suffering. Follow-up studies of extremely low-birth-weight infants show that the smallest infants have a high rate of severe sequelae. Some argue that such suffering should be sufficient reason to make us desist from further attempts to advance the frontiers of therapy. This paper seeks to reflect on the character of advanced medicine and on how we relate to patients and their kin in our quest for further improvements in therapy. The price for continued advances will inevitably be paid by some patients who will not profit from them. Therefore, patients who are asked to participate in such a quest must receive honest and transparent information, including a discussion about where and how they would draw the limits. Clinical competency is a core concept in advanced medicine, but a caring comportment also demands that our relationship to the patient be characterized by honesty, integrity, and decency. In dialogue with parents, finding the right balance between parental exercise of autonomy and safe-guarding the best interest of the child remains a challenge., (Copyright © 2011 S. Karger AG, Basel.)

As the National Association of Neonatal Nurses celebrates its 25th year, we look back at 5 cases that reflect the times in which these babies were born and whose stories have impacted the development of neonatal ethics. These 5 stories take us through the periods of "all must be done" to "parents can choose" and to "are we overdoing?" Neonatal nurses can receive guidance from these wise parents today.

The aim of this study was to assess mothers' knowledge on newborn care as well as factors associated with poor knowledge. A cross-sectional study sampled 446 mother-newborn pairs from five hospitals in the Puttalam district of Sri Lanka by stratified random sampling. Maternal knowledge on newborn care was assessed using a questionnaire with 50 statements via exit interview. A knowledge score was created by allocating 1 point for each correct response, which was dichotomised as 'satisfactory' or 'poor' by the median score. Only 21.7% correctly answered that 'surgical spirit' (70% isopropyl alcohol) should not be applied on the umbilical stump. More than 90% of mothers knew about breastfeeding on demand, the advantages of colostrum and the duration of exclusive breastfeeding. Except for a few conditions, mothers demonstrated a satisfactory knowledge in recognising danger signs of the newborn. According to multivariate analysis, primiparae (odds ratio (OR)=2.31; 95% CI 1.53-3.50), unemployed women (OR=3.31; 95% CI 1.89-5.80) and those with delayed antenatal booking visits (OR=2.02; 95% CI 1.26-2.23) were more likely to have poor knowledge. In conclusion, mothers had a satisfactory level of knowledge about breastfeeding and recognition of danger signs, but knowledge about care of the umbilical cord was poor. Maternal education programmes should place more emphasis on first-time mothers, unemployed women and those with delayed booking visits.

The prescription of practice guidelines for consent in neonatal care that are appropriate for all interventions faces substantial problems. Current practice varies widely. Consent in neonatal care is compromised by postnatal constraints on information sharing and decision-making. Empirical research shows marked individual and cultural variation in the degree to which parents want to contribute to decision-making on behalf of their infants. Conflict between the parents' wishes and the infant's best interests could arise if consent for a recommended intervention were refused, and parental refusal of consent may have to be overridden. Consent to an appropriate package of care (such as special, intensive or palliative care) may be morally preferable to a universal requirement to seek consent for all individual interventions entailed by that package.

Ethical and social issues are based upon a system of moral values that serve the best interests of the society in a humane and compassionate manner. The ethical decisions should be based upon the well-enunciated principles of beneficence, non-maleficence, parental autonomy, correct medical facts and justice. In view of our economic constraints, we should follow the philosophy of utilatarian ethics based on the concept of "value for money" and focus our resources and efforts for the care of salvageable babies. Nevertheless, we should try to ensure equitable development of health care of neonates at all levels, and NICU facilities should be developed in the country in a phased manner. In order to ensure justice and cost-effectiveness, the narrow principles of "best interest" of the child should be replaced by the concept of global beneficence to the family, society and the state. Neonatologists are often faced with a large number of ethical issues and dilemmas in the care of critically sick newborn babies and they should be resolved jointly by taking nurses, sub-speciality colleagues and family members into confidence. The technology should not be allowed to further dehumanize medicine and we must establish rapport and provide emotional support to the family members by showing our concern, sympathy and compassion in the care of their critically sick and extremely preterm babies. It is desirable that all the medical and nursing schools in the country should initiate regular education programs in the field of behavioural sciences, communication techniques and medical ethics for the benefit of graduate and postgraduate medical and nursing students.

Anecdotally, concerns are often expressed about the varying infant feeding decisions among women from different cultural groups. This paper reports the early infant feeding decisions and duration of breastfeeding in 986 women from English, Chinese and Arabic-speaking backgrounds in Sydney during 1997 and 1998. Data were collectedfrom an audit of medical records and through a questionnaire at eight weeks postpartum. Chinese-speaking women were less likely to express an intention to breastfeed and fewer initiated breastfeeding compared with other women. Arabic-speaking women had significantly longer duration rates compared with other women. A greater proportion of the Chinese-speaking women who initiated breastfeeding were still breastfeeding at eight weeks compared with English-speaking women. This study suggests that there are differences in the infant feeding decisions between English, Arabic and Chinese-speaking women. Clinicians need to further understand cultural differences when providing care, education and support in a multicultural context.