In a crisis, societal needs take precedence over a patient’s best interests. Triage guidelines, however, differ on whether limited resources should focus on maximizing lives or life-years. Choosing between these two approaches has implications for neonatology. Neonatal units have ventilators, some adaptable for adults. This raises the question of whether, in crisis conditions, guidelines for treating extremely premature babies should be altered to free-up ventilators. Some adults who need ventilators will have a survival rate higher than some extremely (...) premature babies. But surviving babies will likely live longer, maximizing life-years. Empiric evidence demonstrates that these babies can derive significant survival benefits from ventilation when compared to adults. When “triaging” or choosing between patients, justice demands fair guidelines. Premature babies do not deserve special consideration; they deserve equal consideration. Solidarity is crucial but must consider needs specific to patient populations and avoid biases against people with disabilities and extremely premature babies. (shrink)

The Child Abuse Amendments of 1984 established the norms for treating disabled newborns, but they did not address the treatment of premature babies. Parents and physicians need a framework for decisionmaking. A decision handed down recently by the Texas Supreme Court is a step forward.

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)

The Surfactant, Positive Pressure, and Oxygenation Randomized Trial (SUPPORT) has been the focal point of many different criticisms regarding the ethics of the study ever since publication of the trial's findings in 2010 and 2012. In this article, we focus on a concern that the technical design and implementation details of the study were ethically flawed. While the federal Office Human Research Protections focused on the consent form, rather than on the study design and implementation, OHRP's critiques of the consent (...) form reveal views about the study design and implementation that we believe are fundamentally flawed. These criticisms about the design and implementation of SUPPORT, if generalized, become relevant concerns about these aspects of many comparative effectiveness research studies.Our analytical approach will be to use SUPPORT as a prime example of comparative effectiveness research and show why it challenges some prevailing assumptions about the riskiness of research. We will address five aspects of the study design and implementation: 1) randomization, 2) treatment by protocol, 3) choice of endpoints, 4) lack of a “standard care” control group, and 5) the use of altered oximeters. Examining these aspects will allow us to answer two specific central questions. The first is a methodological question with ethical implications: was the study designed in such a way as to answer the primary study question? The second question is whether the study design added or decreased risk to the babies enrolled in the study compared to babies who were not in the study. (shrink)

In the United Kingdom women have access to termination of pregnancy for maternal reasons until 24 weeks’ completed gestation, but it is accepted practice for children born at or beyond 25 weeks’ gestation to be treated according to the child’s perceived best interests even if this is not in accordance with parental wishes. The authors present a case drawn from clinical practice which highlights the discomfort that parents may feel about such an abrupt change in their rights over their child, (...) and argue that parents should have greater autonomy over treatment decisions regarding their prematurely born children. (shrink)

Improved life sustaining technology in the neonatal intensive care unit (NICU) has resulted in an increased probability of survival in extremely premature babies. Miracle baby stories in the popular press are a regular occurrence and these reports are often the first source from which the general public learn about extremely premature babies. The research from which this paper is drawn sought to explore the care‐giving and ethical dilemmas of neonatal nurses when caring for extremely premature (...) babies 24 weeks gestation and less. This current paper aims to outline the views of neonatal nurses on miracle baby stories in the media. Data were collected via a questionnaire to 760 Australian neonatal nurses with 414 returned, representing a response rate of 54.4%. Narrative was collected from semi‐structured interviews with 24 experienced neonatal nurses in NSW, Australia. A qualitative approach utilising thematic analysis was utilised to analyse the data. The theme the myth of the miracle baby is seen as generating myths and unrealistic expectations on the part of vulnerable families and the public. Neonatal nurses, as the primary caregivers for tiny babies and their families, viewed popular media publications with suspicion, believing published reports to be incomplete, inaccurate and biased towards the positive. (shrink)

Background: Evolving technology and scientific advancement have increased the chances of survival of the extremely premature baby; however, such survival can be associated with some severe long-term morbidities. Research question: The research investigates the caregiving and ethical dilemmas faced by neonatal nurses when caring for extremely premature babies (defined as ≤24 weeks’ gestation). This article explores the issues arising for neonatal nurses when they considered the philosophical question of ‘what if it was me and my baby’, or (...) what they believed they would do in the hypothetical situation of going into premature labour and delivering an extremely premature baby. Participants: Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia. Ethical considerations: Relevant ethical approvals have been obtained by the researchers. Findings: A qualitative approach was used to analyse the data. The theme ‘imagined futures’ was generated which comprised three sub-themes: ‘choice is important’, ‘not subjecting their own baby to treatment’ and ‘nurses and outcome predictions’. The results offer an important and unique understanding into the perceptions of nursing staff who care for extremely premature babies and their family, see them go home and witness their evolving outcomes. The results show that previous clinical and personal experiences led the nurses in the study to choose to have the belief that if in a similar situation, they would choose not to have their own baby resuscitated and subjected to the very treatment that they provide to other babies. Conclusion: The theme ‘imagined futures’ offers an overall understanding of how neonatal nurses imagine what the life of the extremely premature baby and his or her family will be like after discharge from neonatal intensive care. The nurses’ past experience has led them to believe that they would not want this life for themselves and their baby, if they were to deliver at 24 weeks’ gestation or less. (shrink)

Infant feeding decisions are highly emotionally charged. I argue elsewhere that many problems surrounding infant feeding decisions result from a moralized context created by mistakes in our assumptions about maternal duties including the mistaken assumption that mothers have a defeasible moral duty to breastfeed. Mothers have a reason, but not a moral duty to breastfeed. Even those who are convinced by my argument in the case of full-term babies, might find it harder to accept in the case of (...) class='Hi'>premature babies. It might seem that mothers do have a defeasible moral duty to breastfeed or, as is more likely to be appropriate in such cases, to express breastmilk. Here, I explain why preterm neonates present a tricky case for the right not to breastfeed. I show why, nonetheless, moral pressure for mothers to express breastmilk in the neonatal unit is neither permissible nor pragmatically advisable. I argue that instead we should address structural barriers to providing breastmilk and support donor milk initiatives. (shrink)

We see no grounds for insisting that, because the concept natural number is abstract, its foundations must be innate. It is possible to specify domain general learning processes that feed into more abstract concepts of numerical infinity. By neglecting the messiness of children's slow acquisition of arithmetical concepts, Rips et al. present an idealized, unnecessarily insular, view of number development.

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)

Prolonging neonatal lifeThe paradox that medicine’s success breeds medicine’s problems is well known to readers of the Journal of Medical Ethics. Advances in neonatal medicine have worked wonders. Not long ago, extremely premature birth babies, or those born with very serious health problems, would inevitably have died. Today, neonatologists can resuscitate babies born at ever-earlier stages of gestation. And very ill babies also benefit from advances in neonatal intensive care. Infant lives can be prolonged. Unfortunately, several (...) such babies will not survive for long whatever is done for them. Others will live to leave hospital, but face severe health problems. Doctors have gained the ability to prolong neonatal life. But should they always do so? This question is central to the recent report of the Nuffield Council on Bioethics, Critical care decisions in fetal and neonatal medicine.1 In many quarters, the report received a very positive response, commended in The Lancet as “thoughtful, sensitive and sensible” and welcomed by the premature baby charity BLISS. Critics attacked on both flanks. The report goes too far—ushering in a culture of “throw away babies”. Or it does not go far enough—failing to endorse the Dutch precedent to sanction active neonatal euthanasia.TOO FAR?One of the key recommendations of the report is that guidelines be developed in relation to the institution of intensive neonatal care. It is these guidelines, which have been savaged by some parts of the media. The BMA called them “blanket rules” smothering clinical discretion. The guidelines on resuscitation at birth apply to babies born at the borderline of viability, that is, at or before a gestational age of 25 weeks 6 days. The earlier the baby is born, the lower are the chances that he/she will survive to leave hospital. Before 21 weeks 6 days, none of …. (shrink)

In their important article, Haward et al. (2020) discuss whether guidelines for treating extremely premature babies should be altered to free up ventilators during crises such as COVID-19 pandemic. The authors’ claim is that premature babies do not deserve special consideration for ventilator treatment but merely equal consideration. In this brief commentary, I continue their discussion by considering additional factors that may help us determine whom we should save in a crisis: babies or the elderly.

Andrew was a desperately premature baby weighing under two pounds. He died after months of "heroic' efforts in an intensive care facility. The story of his short cruel institutionalised life is a case study in the limits and excesses of modern medicine. The night he told us our son Andrew was about to die the doctor who had taken charge of him six months before also told us we were "intellectually tight' that we had "no feelings only thoughts and (...) words and strategies'. We were "bad parents'. As the parents of a five-year-old daughter we knew the love a mother and father feels for children. Yet as Andrew's parents we were used to condemnation and insult. Andrew was a baby born 15 weeks prematurely weighing only 1lb 12oz and in a state of painful deterioration almost from the start. We wanted him to be allowed to die a natural death. Andrew's story is the story of what can happen when a baby becomes hopelessly entrapped in an intensive care unit where the machinery is more sophisticated than the code of law and ethics governing its use. The letter printed below was sent to the administrator and numerous personnel of the hospital that controlled the life and death of our son. The physician-in-chief of that hospital characterised it as a "carefully documented critique'. The letter appear here somewhat edited and abridged and the names of people and institutions have been changed all but our own. It is the personal record of what happened to our baby and to us. (shrink)

There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and consider many different factors. Nevertheless, many policies and practices throughout Europe and North America still appear to base decisions on gestational age alone or on gestational age as the primary factor that determines whether doctors recommend or even offer life-sustaining neonatal intensive care (...) treatment. These policies are well intentioned. They aim to guide doctors and parents to make decisions that are best for the baby. That is an ethically appropriate goal. But in relying so heavily on gestational age, such policies may actually do the babies a disservice by denying some babies treatment that might be beneficial and lead to intact survival. In this paper, we argue that such policies are unjust to premature babies and ought to be abolished. In their place, we propose individualized treatment decisions for premature babies. This would treat premature babies as we treat all other patients, with clinical decisions based on an individualized estimation of likelihood that treatment would be beneficial. (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)

A prematurely menopausal woman who underwent chemotherapy for breast cancer wants to have a child with her husband with help from an infertility clinic. Two doctors discuss the risks involved for the couple.

Two incompatible policies exist for guiding medical decisions for extremely premature, sick, or terminally ill infants, the Best Interests Standard and the newer, 20-year old "Baby Doe" Rules. The background, including why there were two sets of Baby Doe Rules, and their differences with the Best Interests Standard, are illustrated. Two defenses of the Baby Doe Rules are considered and rejected. The first, held by Reagan, Koop, and others, is a "right-to-life" defense. The second, held by some leaders of (...) the American Academy of Pediatrics, is that the Baby Doe Rules are benign and misunderstood. The Baby Doe Rules should be rejected since they can thwart compassionate and individualized decision-making, undercut duties to minimize unnecessary suffering, and single out one group for treatment adults would not want for themselves. In these ways, they are inferior to the older Best Interests Standard. A "negative" analysis of the Best Interests Standard is articulated and defended for decision-making for all incompetent individuals. (shrink)

Puisqu'il rend compte d'une pratique de musicothérapie, ce texte ne relève ni de la psychanalyse ni de la psychothérapie, au moins dans ses limites classiques. Nous le publions dans cette section dans la mesure où il fait écho, à certains égards, au texte d'Hervé Bentata « Pulsion invocante, voix, rythme et baby blues » publié précédemment. Il reprend une communication présentée lors du colloque « Il était une fois le conte et ses mythologies – Le temps rythmo-musical du geste parlé (...) dans l'accès au langage » - Psychanalyse et psychothérapie. (shrink)

This is a premature baby. I have decided to submit this rather immature essay to the circle of scholarship mainly because of two considerations, each of which, I must admit, carries with it some deeper concerns.

Policies and position statements regarding decision-making for extremely premature babies exist in many countries and are often directive, focusing on parental choice and expected outcomes. These recommendations often state survival and handicap as reasons for optional intervention. The fact that such outcome statistics would not justify such approaches in other populations suggests that some other powerful factors are at work. The value of neonatal intensive care has been scrutinized far more than intensive care for older patients and suggests (...) that neonatal care is held to a higher standard of justification. The relative value placed on the life of newborns, in particular the preterm, is less than expected by any objective medical data or any prevailing moral frameworks about the value of individual lives. Why do we feel less obligated to treat the premature baby? Do we put newborns in a special and lesser moral category? We explore this question from a legal and ethical perspective and offer several hypotheses pertaining to personhood, reproductive choices, “precious children,” and probable evolutionary and anthropological factors. (shrink)

Background: The ability to save the life of an extremely premature baby has increased substantially over the last decade. This survival, however, can be associated with unfavourable outcomes for both baby and family. Questions are now being asked about quality of life for survivors of extreme prematurity. Quality of life is rightly deemed to be an important consideration in high technology neonatal care; yet, it is notoriously difficult to determine or predict. How does one define and operationalise what is (...) considered to be in the best interest of a surviving extremely premature baby, especially when the full extent of the outcomes might not be known for several years? Research question: The research investigates the caregiving dilemmas often faced by neonatal nurses when caring for extremely premature babies. This article explores the issues arising for neonatal nurses when they considered the philosophical and ethical questions about quality of life in babies ≤24 weeks gestation. Participants: Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia. Ethical considerations: Ethical processes and procedures have been adhered to by the researchers. Findings: A qualitative approach was used to analyse the data. The theme ‘difficult choices’ was generated which comprised three sub-themes: ‘damaged through survival’, ‘the importance of the brain’ and ‘families are important’. The results show that neonatal nurses believed that quality of life was an important consideration; yet they experienced significant inner conflict and uncertainty when asked to define or suggest specific elements of quality of life, or to suggest how it might be determined. It was even more difficult for the nurses to say when an extremely premature baby’s life possessed quality. Their previous clinical and personal experiences led the nurses to believe that the quality of the family’s life was important, and possibly more so than the quality of life of the surviving baby. This finding contrasts markedly with much of the existing literature in this field. Conclusion: Quality of life for extremely premature babies was an important consideration for neonatal nurses; however, they experienced difficulty deciding how to operationalise such considerations in their everyday clinical practice. (shrink)

Background: Improved techniques and life sustaining technology in the neonatal intensive care unit have resulted in an increased probability of survival for extremely premature babies. The by-product of the aggressive treatment is iatrogenic pain, and this infliction of pain can be a cause of suffering and distress for both baby and nurse. Research question: The research sought to explore the caregiving dilemmas of neonatal nurses when caring for extremely premature babies. This article aims to explore the (...) issues arising for neonatal nurses when they inflict iatrogenic pain on the most vulnerable of human beings – babies ≤24 weeks gestation. Participants: Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia. Ethical consideration: Ethical processes and procedures set out by the ethics committee have been adhered to by the researchers. Findings: A qualitative approach was used to analyse the data. The theme ‘inflicting pain’ comprised three sub-themes: ‘when caring and torture are the same thing’, ‘why are we doing this!’ and ‘comfort for baby and nurse’. The results show that the neonatal nurses were passionate about the need for appropriate pain relief for extremely premature babies. Conclusion: The neonatal nurses experienced a profound sense of distress manifested as existential suffering when they inflicted pain on extremely premature babies. Inflicting pain rather than relieving it can leave the nurses questioning their role as compassionate healthcare professionals. (shrink)

With advancing rank in medical training comes increased academic and clinical responsibility, including education and supervision of trainees and junior staff. When I became a senior postdoctoral fellow sub‐specializing in neonatology, I assumed the role of co‐attending in the neonatal intensive care unit. At that point in my training, I felt well prepared for the challenging task. I would be in charge, make decisions independently with the team, and supervise, as well as teach, the junior fellows, residents, and practitioners. In (...) short, I would assume full responsibility for the care of the patients, their families, and the medical team. My mentor, an experienced attending, would discuss every patient with me each day, but would otherwise stand in the shadows, available for help and guidance when needed. On the very first day, one of the smaller premature babies on our service started having difficulty breathing, and it was soon clear that she would need to have her endotracheal tube reinserted. (shrink)

Background Conducting clinical trials with pre-term or sick infants is important if care for this population is to be underpinned by sound evidence. Yet, approaching the parents of these infants at such a difficult time raises challenges to obtaining valid informed consent for such research. In this study, we asked, What light does the analytical literature cast on an ethically defensible approach to obtaining informed consent in perinatal clinical trials? -/- Methods In a systematic search, we identified 30 studies. We (...) began our analysis by applying philosophical frameworks, which were then refined as concepts emerged from the analytical studies, to present a coherent picture of a broad literature. -/- Results Between them, the studies addressed four themes. The first three were the ethical basis for parental informed consent for neonatal and/or perinatal research, the validity of parental consent in this context, and the range of possible options in methods for gaining consent. The last was the issue of risk and the possibility of a double-standard or asymmetry in the current approaches to the requirement for consent for research and consent for clinical treatment. -/- Conclusions In addressing these issues, the analysed studies showed that, whilst there are a variety of possible defences for seeking parental ‘consent’ to neonatal and/or perinatal clinical trials, these are all consistent with the strongly and widely held view that it is important that parents do give (or decline) consent for such research. So far as the method of obtaining consent is concerned, none of the existing consent processes reviewed by the research is satisfactory, and there are philosophical reasons for supposing that at least some parents will fail to give valid consent in a neonatal context. Furthermore, in giving parental ‘consent’ in a perinatal context, parents are authorising infant participation, not giving ‘proxy consent’. Finally, there are reasons for giving weight to both parental ‘consent’ and the infant’s best interests in both research and clinical treatment. However, there are also reasons to treat these factors differently in the two contexts, and this may be partly due to the differing relevance of risk in each case. A significant gap is the lack of any detailed discussion of a process of emergency and/or urgent ‘assent’, in which parents assent or refuse their baby’s participation as best they can during the emergency and later give full consent to continuing participation and follow-up. (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)

The High Court ruling that a premature baby should be not be resuscitatedLate in the afternoon of Thursday, 7 October 2004, Mr Justice Hedley ruled in a highly publicised dispute between parents and doctors about the future care of a severely disabled infant.1 With sadness, and some reluctance, the judge held that Charlotte Wyatt should not be subjected to any further invasive or aggressive treatment to prolong her life, despite her parents’ insistence that she be given every chance to (...) survive a little longer. The judgment was limited in scope. The judge did no more than authorise Charlotte’s doctors “in the event of a disagreement between the parents and themselves, not to send the child for artificial ventilation or similar aggressive treatment”.The fate of baby Charlotte attracted massive media coverage. Just a week later another dispute between a mother and her child’s doctors hit the headlines.2 A third dispute about the care of an older child also looks likely to end up in court.3 However, Charlotte’s case is unusual only in that the case was heard in open court and because it attracted such publicity. For at least 23 years,4 the Family Division of the High Court in England has heard a series of cases when parents and professionals have profoundly disagreed about how best to treat, or not to treat, a very sick baby. As happened in Charlotte’s case, the courts have usually,5 in the end, endorsed the professionals’ judgment about the best interests of the infant. The coincidence of three such high profile cases has prompted speculation that parents will …. (shrink)

How shall we decide for others who cannot decide for themselves? And who—or what, in the case of artificial intelligence — should make the decision? The present issue of the journal tackles several interrelated topics, many of them having to do with surrogate decision making. For example, the feature article by Jardas et al 1 explores the potential use of artificial intelligence to predict incapacitated patients’ likely treatment preferences based on their sociodemographic characteristics, raising questions about the means by which (...) we come to decide for others. And a clinical ethics round table led by Wilkinson and Pillay2 examines the case of a premature baby on life support whose primary surrogate is herself incapacitated. Together, these examples force us to think more deeply about the meaning and significance of taken-for-granted concepts: respect for autonomy, substituted judgement, best interests. We’ll consider the baby first and then turn to AI. “Baby T” is a critically ill newborn delivered prematurely by emergency caesarean section. The mother had entered into a surrogacy arrangement with a same-sex male couple, the intended parents, who were to take over the baby’s care after birth—just as soon as a formal parental order could be obtained through the court. Until then, the birth mother, who had used her own eggs to conceive Baby T along with sperm from an unidentified donor, would have legal and ethical responsibility to decide about the baby’s care. Unfortunately, she too was in critical condition, having fallen unconscious prior to delivery due to a sudden brain haemorrhage. She remained unconscious, and thus incapacitated, during a crucial period in which time-sensitive decisions about Baby T’s care needed to be made, including whether to continue life support. Given the mother’s incapacity, who should …. (shrink)

Childbearing is an increasingly complicated matter, which has evolved significantly over the past several decades. Treatment options for infertility have expanded. Prenatal testing and treatment have led to an evolution in obstetrical decision-making, wherein the risks and benefits to the fetus and future child are better understood and more strongly considered in medical management of the pregnant woman. Obstetrics appears to be increasingly interventional; one in three babies in the United States is now born by cesarean section. Neonatal intensive (...) care has markedly improved outcomes for premature babies. A pregnant woman may now be presented with many options— obstetrician or midwife, home or hospital delivery, choices among prenatal testing and monitoring, early induction of labor, cesarean delivery. Health care professionals face similar decisions with regard to what they recommend and the boundaries of safe and responsible care they should make available. Preterm Babies, Fetal Patients, and Childbearing Choices, by John D. Lantos and Diane S. Lauderdale, provides an excellent overview of the available information relevant to these questions. (shrink)

As clinicians, this case1 raises both personal and professional challenges. A key issue is who carries legal parental responsibility for the difficult decisions that may be required around life-sustaining care in baby T. Medicolegally, we understand that the surrogate mother holds legal parental responsibility for baby T until this can be transferred to the intended parents.2 But this process can take many months to complete, after the birth of baby. As M is now critically ill and unable to engage in (...) any discussion around the care of her baby, who becomes the legal guardian of the baby, for complex decision making that involves either reorientation of care away from intensive care with the inevitable consequence of death in this extremely premature baby, or continuing this life-sustaining treatment with a high likelihood for major neonatal morbidity and longer term disability? Does it pass onto one of the IPs as the genetic father, or does this responsibility fall on the neonatal consultant managing the baby in intensive care? And if an antenatal surrogacy agreement had existed, is it legally binding for inclusion of the IPs perspectives in the decision-making, especially if our medical decision making turns out to be at discord with the beliefs and wishes of the IPs for baby T? Box 1 ### Current surrogacy proceedings in the UK.2 6–8 The Law Commission UK5 is currently reviewing the decision on whether legal parenthood to intended parents can be effected immediately at the time of birth of the baby. Parental orders. (shrink)

When should doctors seek protective custody to override a parent’s refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25–50%. This is not the case when the treatment in question is (...) open heart surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40–50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations. (shrink)

In the past few years, medical practices surrounding the decision to resuscitate marginally viable newborns have received a fair amount of attention. Baroness Warnock, of the UK Nuffield Council on Bioethics, has recently suggested that Britain follow the recommended practice in Holland of setting a gestational age limit below which marginally viable newborns should not be routinely resuscitated, despite reported statistical probabilities of raw survival approaching twenty percent. In the US, a highly publicized case from Texas came to a controversial (...) legal conclusion, permitting physicians to disregard parental preference for palliative care and unilaterally initiate resuscitation when faced with the birth of an extremely premature baby. (shrink)

Critical care of neonatesThe recently published report of the Nuffield Council on Bioethics, Critical care decisions in fetal and neonatal medicine, is a valuable contribution to the discussion of decision making in the critical care of neonates. Drawing upon medical evidence, the working party highlights the many practical difficulties arising in neonatal care and by setting out clearly the nature of the ethical and other issues arising in this area of medicine, and their relationship with neonatal development, the resulting report (...) has the potential to lead both to improved practice and to better informed communication between doctors and families when they face difficult decisions about how best to treat very premature babies. Based on medical evidence, the working party sets out guidelines on decision-making about the resuscitation of babies born before the gestational age of 25 weeks and 6 days, dividing this period into four chronological periods: before 21 weeks and 6 days when resuscitation should normally only take place within the context of a research project; between 22 weeks and 23 weeks when resuscitation should not normally be carried out unless the parents request it; at 23 or 24 weeks when parental views should take precedence; and, after 24 weeks when resuscitation should be the norm unless not in the child’s best interests.There are several practical ethical difficulties with this aspect of the advice. To what extent, for example, does the paediatric assessment of the child, intended to play a role in decision-making about the appropriateness of resuscitation, itself depend on the initiation of resuscitation? To what extent is it reasonable and humane to expect parents to take full responsibility for making decisions about resuscitation between 23 and 24 weeks? On what grounds is it acceptable to attempt to resuscitate a baby <21 weeks and 6 …. (shrink)

A commentary on “SUPPORT and the Ethics of Study Implementation: Lessons for Comparative Effectiveness Research from the Trial of Oxygen Therapy for Premature Babies,” by John D. Lantos and Chris Feudtner, in the January‐February 2015 issue.

Providing care for a baby born at 24 weeks of gestation in a neonatal intensive care unit is one of the most expensive medical treatments in the United States today. The cost can easily run over $300,000 for one baby. Furthermore, many extremely premature babies who survive are left with chronic diseases or disabilities that require further medical expenses and other specialized services throughout childhood or throughout life. When all these expenditures are totaled up, it can seem that (...) neonatal intensive care is just not worth it.Concerns about the cost-effectiveness of NICUs have led to persistent critical scrutiny of these specialized units by physicians, economists, and epidemiologists. These analysts have examined NICUs and the patients in them in order to determine whether there are subpopulations of babies for whom neonatal intensive care is so demonstrably ineffective or so costly that it should not be provided. Such examinations have been carried out in many different countries, at many times over the last 30 years, and have analyzed outcomes for babies by gestational age, birthweight, and illness severity. (shrink)

Five years ago, remarkable animal experiments on artificial womb technology (AWT) at Children’s Hospital of Philadelphia (CHOP) got us thinking about the ethical for premature babies. We recognized...

Prematurely born children who have underdeveloped lungs may suffer a potentially fatal condition called respiratory distress syndrome. A U.S. company developed a drug, called Surfaxin, to treat such poorly functioning lungs. A placebo-controlled study was planned in four Latin American countries. At the time, in 2001, four treatments were already on the market, although not available to the research populations used in the study. This case is usually discussed as part of the standard of care debate or offered as an (...) example of exploitation. However, what concerns us in this case is rather the choice given to the parents of a prematurely born child under these circumstances: “You can give consent for your child's participation in this study. Half of the babies enrolled will receive sham air and are as likely to die as if they had not enrolled. The other half will receive an active treatment and are more likely to survive.” The parents can vastly increase their baby's chances of survival by participating in the study. Can the consent be voluntary? Do the parents have any meaningful choice? (shrink)

Baby A1 was born prematurely with severe encephalopathy, injured brainstem, and a potentially injured spinal cord. He had no response to pain or other external stimuli. The neonatal team unanimousl...

Domestic violence is one of the most common forms of violence against women. Domestic violence during pregnancy is associated with adverse perinatal and maternal outcomes. We aimed to assess whether domestic violence was associated with mode of delivery, low birthweight and preterm birth in two sites in Nepal. In this prospective cohort study we consecutively recruited 2004 pregnant women during antenatal care at two hospitals between June 2015 and September 2016. The Abuse Assessment Screen was used to assess fear and (...) violence. Having ever experienced either fear or violence was defined as any domestic violence. Obstetric outcomes were obtained from hospital records for 1381 women, selecting singleton pregnancies only. Mode of delivery was assessed as birth by cesarean section or not. A birthweight of less than 2500 g was defined as low birthweight and preterm birth as birth before completion of 37 weeks gestation. Descriptive and multiple logistic regression analyses were performed to assess associations. Twenty percent of the women reported any domestic violence. Among all 1381 women, 37.6% gave birth by cesarean section. Of those women who delivered by cesarean section, 84.7% had an emergency cesarean section. Less than 10% of the babies were born prematurely and 13.5% were born with low birthweight. We found no significant association between exposure to any domestic violence during pregnancy and risk of a low birthweight baby or birth by cesarean section. However, having experienced both violence and fear was significantly associated with giving birth to a preterm infant [aOR 2.33 ]. Domestic violence is common in Nepal. This is a potential risk factor for severe morbidity and mortality in newborns. We found that the risk of having a preterm baby was higher for pregnant women who experienced both fear and violence. This should be recognized by the health sector. In this study, no significant differences were found in the rate of cesarean section nor low birthweight for women who had experienced any domestic violence compared to those who did not. (shrink)

Ethical dilemmas abound in the neonatal intensive care unit as hour-to-hour life and death decisions are made for premature or compromised newborns. This book is a rich tapestry of parental perceptions woven from the many stories parents tell about their experiences with a baby in the unit, as well as major events after discharge related to the ethical decision making.

The possibility of achieving ectogenesis, or the growing of a human fetus to term in an artificial womb, is approaching reality as a result of advances in treatment of premature newborns and in in vitro fertilization techniques. In their 1984 book, The Reproductive Revolution, issued in North America as Making Babies, Peter Singer and Deane Wells offered several arguments for ectogenesis. James examines their arguments and rejects two of them, that ectogenesis offers a less problematic alternative to surrogate (...) motherhood, and that ectogenesis could make it possible to reconcile fetal rights with the right to abortion on demand. He grants Singer and Wells' argument that the childless have a claim to state support of their desire to nurture, but contends that government-supported ectogenesis should still be rejected because the adoption of unwanted children is a preferable alternative to the use of an exotic, expensive, and still unproven technology. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Tiny Person, Big ImpactT.S. MoranI met J on a Tuesday, the second day of my new job as the pediatric oncology social worker. Five days later, he died.Although J was 8 months old, he seemed tiny, like a preemie. When I saw him, he was snuggled into the shoulder of the attending physician. It was evident that one of his diagnoses was failure to thrive. He also had what (...) was thought to be a low-grade glioma of the optic pathway, and despite months of treatment, he was declining. It was clear that the team cared for J very much. They visited him, held him, played with him, and sang lullabies to him in Spanish. I was so impressed by their compassion.J had spent about half of his short life at the hospital. He was born prematurely to a young mother, herself in foster care. His mother had numerous obstacles preventing her from visiting often and it did not seem that she bonded well with him. J's mother stated that her boyfriend discouraged her from visiting. She did not have transportation and declined offers of hospital-funded Uber rides. She had little prenatal care or education about becoming a mother.J's mother seemed guarded in her interactions; hesitant to reveal anything that might show her vulnerability. The team was frustrated as it seemed she was not receptive to their efforts. The team was also concerned that she did not fully understand J's condition due to her poor health literacy, despite the use of a certified language interpreter. Still, when she did visit, she was kind and caring and stated that she did not want her foster mother involved in providing J's care.Part of my job was to help prepare the family for discharge to home. I had been speaking to their caseworker from Child Protective Services. She was a strong advocate for both mother and baby. After several meetings with the team that included J's mother and the caseworker, J's mother accepted his prognosis. She was willing to provide care at home with hospice support. She came to the unit several times that week to receive training about his care needs. The hospice nursing visit was scheduled, and J and his mother left the hospital on a Friday.The caseworker called on Monday to tell us that J had passed away peacefully on Sunday. The reaction on the unit was palpable. New residents and seasoned chiefs were teary-eyed and sighing. To some, it seemed like a relief. Given the team's extraordinary care and concern shown to this family, I was not surprised by their emotions.What surprised me was my level of grief. I had spent the 12 years prior serving adult hospice patients; I understood end-of-life care and death's eventuality. I thought I was well prepared. This experience was different from my past. I was able to cope with an adult patient's passing without much distress, accepting that most adults had lived a full life.I felt grief for the team who had invested in J, and for his short life filled with illness and pain. I felt grief for his mother, who had experienced a horrific childhood, had lost her innocence too young, and had been robbed of the opportunity to experience joyful parenting. [End Page 82]The chief recognized the team's need for support and quickly organized a "debriefing." A lot of the team participated, even those who only had brief contact with J. Everyone had a chance to reflect on their experience in caring for this child. Because of my hospice training, I was included. I validated their loss, their efforts, and their love for J. I provided basic grief education, enumerating their possible reactions of sadness, anger, frustration, fatigue, confusion, or numbness, and this helped me to feel like I also contributed to his care. I encouraged self-care—from taking time off, to lingering over an extra cup of tea, to speaking about their experience with me or another social worker.When I spoke about my feelings to my coworkers, they were understanding and acknowledged... (shrink)

The Middle Ages have their great love stories. We owe one of them to Peter I Lusignan, King of Cyprus. Married to Eleanor of Aragon, who bore him a son and a successor, he had a mistress pregnant with his child. The queen decided to eliminate this rival by inducing a premature delivery. The incident was recorded by Leontios Makhairas, a Cypriot chronicler, who described the cruelty of Eleanor and mourned the fate of the baby. But it is not (...) his account which keeps this tragedy alive in Cyprus even today. There is a folk song about beautiful Arodaphnousa, who suffered because of the bad queen. The song is deprived of historical context, but it is a historical source nevertheless. Its remote counterpart is the Catalan story of Eleanor, who was expelled from Cyprus and lived in Aragon for a long time. This story creates an image of a benign, calm lady who was venerated after death by her subjects. The clash between these images makes one think about the black and white PR created in every epoch. But this is not the point of this story. The point is the fate of an innocent child, both the flower and the victim of love. This is a rare motif in medieval literature; children are seldom present on the pages of its manuscripts. The emotion connected with this story deserves the reader’s attention. (shrink)

Since the early 1980’s, with the clinical advent of in vitro fertilization resulting in so-called “test tube babies,” a wide array of ethical considerations and concerns regarding artificial womb technology (AWT) have been described. Recent breakthroughs in the development of extracorporeal neonatal life support by means of AWT have reinitiated ethical interest about this topic with a sense of urgency. Most of the recent ethical literature on the topic, however, pertains not to the more imminent scenario of a physiologically (...) improved method of neonatal care through AWT, but instead to the remote scenario of “complete ectogenesis” that imagines human gestation occurring entirely outside of the womb. This scoping review of the ethical literature on AWT spans from more abstract concerns about complete ectogenesis to more immediate concerns about the soon-to-be-expected clinical life support of what we term the fetal neonate or fetonate. Within an organizing framework of different stages of human gestational development, from conception to the viable premature infant, we discuss both already identified and newly emerging ethical considerations and concerns regarding AWT and the care of the fetonate. (shrink)

The views of parents and staff about physical and symbolic space and its effects on ethical clinical practice are reported. Researchers observed four neonatal intensive care units (NICUs) in southern England, and interviewed 40 senior staff and the parents of 80 babies. The adults' concerns include: how space affects the sharing of information and responsibility for the babies; respect and welcoming policies; access, freedom of movement and accessibility of staff; family friendly space and privacy; aesthetic values; and 'baby-led' (...) space. The paper concludes that abstract principles of respect for autonomy and attitudes towards the baby's biological and personal space take on practical embodied meanings in clinical spaces and practices. NICU design and aesthetics convey powerful ethical messages of welcome or exclusion that endorse or undermine partnerships between staff and parents. Helping premature and impaired babies to reach their space at the centre of their family involves sensitive management. (shrink)

In 2017, a Philadelphia research team revealed the closest thing to an artificial womb the world had ever seen. The ‘biobag’, if as successful as early animal testing suggests, will change the face of neonatal intensive care. At present, premature neonates born earlier than 22 weeks have no hope of survival. For some time, there have been no significant improvements in mortality rates or incidences of long-term complications for preterms at the viability threshold. Artificial womb technology, that might change (...) these odds, is eagerly anticipated for clinical application. We need to understand whether AWT is an extension of current intensive care or something entirely new. This question is central to determining when and how the biobag should be used on human subjects. This paper examines the science behind AWT and advances two principal claims. First, AWT is conceptually different from conventional intensive care. Identifying why AWT should be understood as distinct demonstrates how it raises different ethico-legal questions. Second, these questions should be formulated without the ‘human being growing in the AW’ being described with inherently value laden terminology. The ‘human being in an AW’ is neither a fetus nor a baby, and the ethical tethers associated with these terms could perpetuate misunderstanding and confusion. Thus, the term ‘gestateling’ should be adopted to refer to this new product of human reproduction: a developing human being gestating ex utero. While this paper does not attempt to solve all the ethical problems associated with AWT, it makes important clarifications that will enable better formulation of relevant ethical questions for future exploration. (shrink)

In late 2019, He Jiankui, the Chinese scientist who created the world's first gene‐edited babies, and two embryologists were sentenced to prison and fined. Thirteen months earlier, when the world first learned about the experiment, He and his colleagues drew swift and nearly uniform international condemnation for prematurely moving to human trials, for the risks they took with the children's health, and for He's secrecy. The organizing committee for the second genome editing summit said the experiment failed to conform (...) with international norms.” In the United States, the legal picture is complex. No doubt the specific experiment He performed would have run afoul of long‐standing research regulations due to its problems with informed consent and ethical review. But other laws also affect this kind of work, in particular, a budget rider that for the past four years has been included in federal appropriations legislation. (shrink)

This book introduces readers to the many arguments and controversies concerning abortion. While it argues for ethical and legal positions on the issues, it focuses on how to think about the issues, not just what to think about them. It is an ideal resource to improve your understanding of what people think, why they think that and whether their (and your) arguments are good or bad, and why. It's ideal for classroom use, discussion groups, organizational learning, and personal reading. -/- (...) From the Preface -/- To many people, abortion is an issue for which discussions and debates are frustrating and fruitless: it seems like no progress will ever be made towards any understanding, much less resolution or even compromise. -/- Judgments like these, however, are premature because some basic techniques from critical thinking, such as carefully defining words and testing definitions, stating the full structure of arguments so each step of the reasoning can be examined, and comparing the strengths and weaknesses of different explanations can help us make progress towards these goals. -/- When emotions run high, we sometimes need to step back and use a passion for calm, cool, critical thinking. This helps us better understand the positions and arguments of people who see things differently from us, as well as our own positions and arguments. And we can use critical thinking skills help to try to figure out which positions are best, in terms of being supported by good arguments: after all, we might have much to learn from other people, sometimes that our own views should change, for the better. -/- Here we use basic critical thinking skills to argue that abortion is typically not morally wrong. We begin with less morally-controversial claims: adults, children and babies are wrong to kill and wrong to kill, fundamentally, because they, we, are conscious, aware and have feelings. We argue that since early fetuses entirely lack these characteristics, they are not inherently wrong to kill and so most abortions are not morally wrong, since most abortions are done early in pregnancy, before consciousness and feeling develop in the fetus. -/- Furthermore, since the right to life is not the right to someone else’s body, fetuses might not have the right to the pregnant woman’s body—which she has the right to—and so she has the right to not allow the fetus use of her body. This further justifies abortion, at least, until technology allows for the removal of fetuses to other wombs. Since morally permissible actions should be legal, abortions should be legal: it is an injustice to criminalizing actions that are not wrong. -/- In the course of arguing for these claims, we: 1. discuss how to best define abortion; 2. dismiss many common “question-begging” arguments that merely assume their conclusions, instead of giving genuine reasons for them; 3. refute some often-heard “everyday arguments” about abortion, on all sides; explain why the most influential philosophical arguments against abortion are unsuccessful; 4. provide some positive arguments that at least early abortions are not wrong; 5. briefly discuss the ethics and legality of later abortions, and more. -/- This essay is not a “how to win an argument” piece or a tract or any kind of apologetics. It is not designed to help anyone “win” debates: everybody “wins” on this issue when we calmly and respectfully engage arguments with care, charity, honesty and humility. This book is merely a reasoned, systematic introduction to the issues that we hope models these skills and virtues. Its discussion should not be taken as absolute “proof” of anything: much more needs to be understood and carefully discussed—always. (shrink)

In recent years, functional connectivity in the developmental science received increasing attention. Although it has been reported that the anatomical connectivity in the preterm brain develops dramatically during the last months of pregnancy, little is known about how functional and effective connectivity change with maturation. The present study investigated how effective connectivity in premature infants evolves. To assess it, we use EEG measurements and graph-theory methodologies. We recorded data from 25 preterm babies, who underwent long-EEG monitoring at least (...) twice during their stay in the NICU. The recordings took place from 27 weeks postmenstrual age until 42 weeks PMA. Results showed that the EEG-connectivity, assessed using graph-theory indices, moved from a small-world network to a random one, since the clustering coefficient increases and the path length decreases. This shift can be due to the development of the thalamocortical connections and long-range cortical connections. Based on the network indices, we developed different age-prediction models. The best result showed that it is possible to predict the age of the infant with a root mean-squared error equal to 2.11 weeks. These results are similar to the ones reported in the literature for age prediction in preterm babies. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Being an Interpreter—Beyond LinguisticsPatricia CoronadoInterpreting refers specifically to the process of listening to and analyzing a message received in one language, then recreating the same message and delivering it in another language, all while preserving the meaning. An interpreter should always maintain a professional distance and be neutral to both sides of the conversation. Could I truly walk this line and perform by the book for each encounter?At one (...) of my medical encounters as a Spanish interpreter, I found myself in the midst of a heart-wrenching situation that involved grappling with life and death. No mother ever wants to hear that her baby has a condition that could lead to death either at birth or shortly thereafter. I had the profound experience of witnessing a woman in the final days of her pregnancy come to terms with a devastating reality.Just before I began my duties as an interpreter, I was informed that the baby had a congenital defect in which they would be born without parts of the brain, a condition called anencephaly. If babies with anencephaly are born alive, they usually live only a few hours or days. They have no forebrain or cerebrum (the main thinking structure of the brain), and the remaining brain tissue is often not covered by bone or skin. The baby will be blind, deaf, unconscious, and unable to feel pain.I learned that anencephaly is a serious birth defect, and the cause is not completely understood, but it's believed to be caused by a combination of genetic factors such as mutations or abnormalities, family history of neural tube defects, folic acid deficiency and exposure to certain toxins, medications, chemicals or substances. Hispanic women are more likely than women of other ethnicities to have a baby with anencephaly.During my first session, the medical team had many questions for the mom. For each question, the mother's responses were brief; either a yes or no answer, even when I was acting as a clarifier to make sure there were no misunderstandings. In my head, I thought:• Maybe she is in denial.• Maybe she has faith that a miracle will happen.• Maybe she is just afraid to ask questions.The registered nurse wanted to make sure that mom had what she would need to be comfortable for the day of her delivery. I remember questions like:• Will the baby be baptized?• Would you like to have a priest or a chaplain from the hospital or church?• Would mom or dad cut the umbilical cord?• Do you have a special blanket to shelter the baby? [End Page E10]The mother remained strong and resilient, keeping her emotions inside, at least from my perspective. The meeting was calm.There was a second session in which the medical team invited me to be part of a private meeting to go over key points about this case prior to the delivery. I remember being introduced to the neonatologist, this extraordinary doctor who played a vital role as part of the medical care team.I immediately did my own research about the functions of a neonatologist—a medical professional who manages the care of babies who are born prematurely or with an illness or congenital disability, such as prematurity or congenital malformations (birth defects), among others.I was present on the day of delivery. As I interpreted the emotional complexity of this event, a deep sense of empathy washed over me. I realized I could serve by giving my love through my words, my silence, and my presence. I interpreted for the mom when there were English-speaking care providers, focusing on interpreting for the patient's mom and spouse when needed. I was quiet in the times when a Spanish-speaking care provider spoke to the patient and family. Lastly, I was available—the only person outside of the family who was present during the actual delivery who was not a nurse or doctor—to help interpret and provide support whenever needed.Even with intensely emotional encounters such as this, my commitment to providing support and assistance remained unwavering. I stayed calm, silently praying for the mother and her baby. In an... (shrink)

In the case that triggered this round-table discussion there are three separate factors that contribute to moral uncertainty.1 First, the infant, baby T, is extremely premature with suspected brain injury and potentially poor prognosis. Second, the gestational mother is critically unwell herself and her outlook is guarded. Third, as linked commentaries make clear, the legal status of the intended parents is complex and ambiguous.2 3 Any of these factors on their own would be enough to generate ethical complexity and (...) distress in the neonatal intensive care unit. The combination of the three is likely to be highly stressful for all concerned.4 Commentaries on the case emphasise the complex legal questions and the potential need to involve the court. One resource that is not mentioned is the potential value of clinical ethics input in such a case. This is complementary to the need for legal advice. Its aim would be to help think through the specifically ethical, rather than legal questions. There are several things that I would aim to clarify if chairing a clinical ethics discussion on the case. First, it may be useful to draw on the concept of the …. (shrink)