Objective: Obtaining informed consent for resuscitation research, especially in the newborn, is problematic. This study aimed to evaluate parental preferences for hypothetical consent procedures in neonatal resuscitation research.Design: Mail-out survey questionnaire.Setting/participants: Randomly selected parents who had received obstetrical or neonatal care at a tertiary perinatal centre.Main outcome measures: Parental levels of comfort regarding different methods of obtaining consent in hypothetical resuscitation research scenarios.Results: The response rate was 34%. The respondents were a group of highly educated (...) women with a higher family income than would be expected in the general population. In terms of results, parents valued the impact the research would have on their baby and the importance of a positive interaction with the physicians conducting the research study. Parents felt most comfortable with prospective consent in the setting of prenatal classes or prenatal visits with a physician, but they were somewhat uncomfortable with prospective consent upon admission to hospital after labour had begun. Parents were uncomfortable with waived consent, deferred consent, and opting out, no matter when during the pregnancy consent was requested.Conclusion: This pilot study reports parental preferences for prenatal information and consent for such research trials of neonatal resuscitation. A low response rate and potentially skewed demographics of the respondents prevent generalisability of this result. Interview studies should be performed to better determine parental preferences for informed consent in a more representative population. (shrink)

Objective To determine whether presenting delivery room management options as defaults influences decisions to resuscitate extremely premature infants. Materials and methods Adult volunteers recruited from the world wide web were randomised to receive either resuscitation or comfort care as the delivery room management default option for a hypothetical delivery of a 23-week gestation infant. Participants were required to check a box to opt out of the default. The primary outcome measure was the proportion of respondents electing resuscitation. Data (...) were analysed using χ2 tests and multivariate logistic regression. Results Participants who were told the delivery room management default option was resuscitation were more likely to opt for resuscitation (OR 6.54 95% CI 3.85 to 11.11, p<0.001). This effect persisted on multivariate regression analysis (OR 7.00, 95% CI 3.97 to 12.36, p<0.001). Female gender, being married or in a committed relationship, being highly religious, experiences with prematurity, and favouring sanctity of life were significantly associated with decisions to resuscitate. Discussion Presenting delivery room options for extremely premature infants as defaults exert a significant effect on decision makers. The information structure of the choice task may act as a subtle form of manipulation. Further, this effect may operate in ways that a decision maker is not aware of and this raises questions of patient autonomy. Conclusion Presenting delivery room options for extremely premature infants as defaults may compromise autonomous decision-making. (shrink)

As guidelines for neonatal resuscitation evolve from a growing evidence base, clinicians must ensure that practice is closely aligned with the available evidence, based on methodologically sound and ethically conducted research. This paper reviews ethical, legal and risk-management issues arising during the design of a quality-assurance project to make video recordings of neonatal resuscitations after high-risk deliveries. The issues, which affect patients, researchers, staff and the hospital at large, include the following: 1) Informed consent for research involving (...) emergency procedures is often not possible, for lack of time to provide sufficient information. The mental capacity of the subject or parent may be compromised by the impending emergency, and freedom of choice is threatened by the time pressure to consent. 2) Video recording of the inevitable medical errors raises issues of whether participating staff may be identifiable and accountable, affecting their willingness to participate in such research. The approach to staff participation and identification is reviewed. 3) The use of video data for education threatens the privacy of research subjects. The ethics of maintaining privacy is balanced with the ethics of using the data to improve practice of resuscitation. 4) The research subjects (patients, or the staff whose performance is being monitored) must be defined. 5) There are legal and ethical aspects of management and ownership of data. 6) The role of the Human Research Ethics Committee in protecting the research subject and possibly the medicolegal interests of the hospital is discussed. This paper reviews the literature and discusses the issues. (shrink)

BackgroundMultidisciplinary study groups have produced documents in an attempt to support decisions regarding whether to resuscitate "at risk" newborns or not. Moreover, there has been an increasingly insistent request for juridical regulation of neonatal resuscitation practices as well as for clarification of the role of parents in decisions regarding this kind of assistance. The crux of the matter is whether strict guidelines, reference standards based on the parameter of gestational age and authority rules are necessary.DiscussionThe Italian scenario reflects (...) the current animated debate, illustrating the difficulty intrinsic in rigid guidelines on the subject, especially when gestational age is taken as a reference parameter for the medical decision.SummaryConcerning the decision to interrupt or not to initiate resuscitation procedures on low gestational age newborns, physicians do not need rigid rules based on inflexible gestational age and birth weight guidelines. Guidance in addressing the difficult and trying issues associated with infants born at the margins of viability with a realistic assessment of the infant's clinical condition must be based on the infant's best interests, with clinicians and parents entering into what has been described as a "partnership of care". (shrink)

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. (...) Most participants agreed with suggesting a do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of ‘DNR’ to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed. (shrink)

Recent animal research suggests that it may soon be possible to support the human fetus in an artificial uterine environment for part of a pregnancy. A technique of extending gestation in this way (“ectogestation”) could be offered to parents of extremely premature infants (EPIs) to improve outcomes for their child. The use of artificial uteruses for ectogestation could generate ethical questions because of the technology’s potential impact on the point of “viability”—loosely defined as the stage of pregnancy beyond which the (...) fetus may survive external to the womb. Several medical decisions during the perinatal period are based on the gestation at which infants are considered viable, for example decisions about newborn resuscitation and abortion, and ectogestation has the potential to impact on these. Despite these possible implications, there is little existing evidence or analysis of how this technology would affect medical practice. In this paper, we combine empirical data with ethical analysis. We report a survey of 91 practicing Australian obstetricians and neonatologists; we aimed to assess their conceptual understanding of “viability,” and what ethical consequences they envisage arising from improved survival of EPIs. We also assess what the ethical implications of extending gestation should be for newborn and obstetric care. We analyze the concept of viability and argue that while ectogestation might have implications for the permissibility of neonatal life‐prolonging treatment at extremely early gestation, it should not necessarily have implications for abortion policy. We compare our ethical findings with the results of the survey. (shrink)

Current United States guidelines for neonatal resuscitation note that there is no mandate to resuscitate infants in all situations. For example, the fetus that at the time of delivery is determined to be so premature as to be non-viable need not be aggressively resuscitated. The hypothetical case of an extremely premature infant was presented to neonatologists from the United States and four other European countries at a September 2006 international meeting sponsored by the World Health Organization Collaborating Center (...) in Reproductive Health of Atlanta (currently, the Global Collaborating Center in Reproductive Health). Responses to the case varied by country, due to differences in legal, ethical and related practice parameters, rather than differences in medical technology, as similar medical technology was available within each country. Variations in approach seemed to stem from physicians’ perceptions of their ability to remove the neonate from life support if this appeared non-beneficial. There appears to be a desire for greater convergence in practice options and more open discussion regarding the practical problems underlying the variability. Specifically, the conference attendees identified four areas that need to be addressed: (1) lack of international consensus guidelines in viability and therapeutic options, (2) lack of bodies capable of generating these guidelines, (3) variation in laws between countries, and (4) the frequent failure of physicians and families to confront death at the beginning of life. (shrink)

Neonatal intensive care units represent simultaneously one of the great success stories of modern medicine, and one of its most controversial developments. One particularly controversial issue is the resuscitation of extremely preterm infants. Physicians in the United States generally accept that they are required to resuscitate infants born as early as 25 weeks and that it is permissible to resuscitate as early as 22 weeks. In this article, I question the moral pressure to resuscitate by criticizing the idea (...) that resuscitation in this context “saves” a human life. Our radical medical advancements have allowed us to intervene in the life of a human before it makes sense to say that such an intervention “saves” someone; rather, what the physician does in resuscitating and treating an extremely preterm infant is to take over creating it. This matters, I argue, because “rescues” are much more morally urgent than “creations.”. (shrink)

This article is a thoughtful and well written examination of some of the complex issues that have emerged as a result of recent improvements in the treatment of extremely low birth weight (ELBW) infants, including those who weigh 500 to 600 grams or who are believed to be 23 to 24 weeks gestation. The authors argue that the 23 to 24 week gestation period is filled with ambiguity and flexibility in practice relative to active resuscitation. However, such ambiguity and (...) flexibility is likely to prevail whatever the boundary conditions of viability happen to be. Thus moral guidelines that inform the rescue of an infant believed to be 500 to 600 grams or 23 or 24 weeks gestation are likely to be relevant whatever the boundary conditions are. (shrink)

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

Muraskas et al. and Hefferman and Heilig present the painfully elusive ethical questions regarding decisionmaking in the care of the extremely low birth weight infants in the intensive care nursery. At what gestation or size do we resuscitate? Can we stop resuscitation after we have started? How much money is too much to spend? Is the distress of the parents of the ELBW infant, the anguish of their caregivers, and the moral and ethical uncertainty of the approach to these (...) infants too much to pay? Who speaks for the neonate: the parent, nurse, attorney, or physician? Ideally these questions should have been answered 30 years ago when modern neonatology embarked on a journey from where it could not return. A new breed of physician, called “neonatologist,” seduced by the high-tech lure and the promise of saving lives previously unsavable pioneered a lucrative and life-saving technological revolution in the care of premature newborns. This rapid advancement in neonatology occurred a few years after the death of a premature infant named Patrick Kennedy in 1963. While the country mourned, medical scientists vowed that this would not happen again. First continuous positive airway pressure, then mechanical ventilation, changed medical care of premature newborns forever. It began an era of euphoria and excitement. Neonatologists raced to push to the edge of newborn viability. What was the youngest salvageable gestational age? What was the smallest that could be saved? Yes, we dreamed, and still do dream of artificial placentas. Ethical questions took a back seat in the search for the edge because the waters were uncharted and the tough questions could not be answered without experience. What was to be the cost in dollars and in anguish to save the Patrick Kennedys of the world? Triumphs led to grave concerns as we approached the edge. However, no advancement in neonatology has ever changed the ultimate questions. (shrink)

BackgroundResuscitation and treatment of critically ill newborn infants is associated with relatively high mortality, morbidity and cost. Guidelines relating to resuscitation have traditionally focused on the best interests of infants. There are, however, limited resources available in the neonatal intensive care unit, meaning that difficult decisions sometimes need to be made. This study explores the intuitions of lay people regarding resource allocation decisions in the NICU.MethodsThe study design was a cross-sectional quantitative survey, consisting of 20 hypothetical rationing scenarios. (...) There were 119 respondents who entered the questionnaire, and 109 who completed it. The respondents were adult US and Indian participants of the online crowdsourcing platform Mechanical Turk. Respondents were asked to decide which of two infants to treat in a situation of scarce resources. Demographic characteristics, personality traits and political views were recorded. Respondents were also asked to respond to a widely cited thought experiment involving rationing.ResultsThe majority of respondents, in all except one scenario, chose the utilitarian option of directing treatment to the infant with the higher chance of survival, higher life expectancy, less severe disability, and less expensive treatment. As discrepancy between outcomes decreased, however, there was a statistically significant increase in egalitarian responses and decrease in utilitarian responses in scenarios involving chance of survival, life expectancy, and cost of treatment. In the classic ‘lifeboat’ scenario, all but two respondents were utilitarian.ConclusionsThis survey suggests that in situations of scarcity and equal clinical need, non-health professionals support rationing of life-saving treatment based on probability of survival, duration of survival, cost of treatment or quality of life. However, where the difference in prognosis or cost is very small, non-health professionals preferred to give infants an equal chance of receiving treatment. (shrink)

Newborn infants are among those most severely affected by humanitarian crises. Aid organisations increasingly recognise the necessity to provide for the medical needs of newborns, however, this may generate distinctive ethical questions for those providing humanitarian medical care. Medical ethical approaches to neonatal care familiar in other settings may not be appropriate given the diversity and volatility of humanitarian disasters, and the extreme resource limitations commonly faced by humanitarian aid missions.In this paper, we first systematically review existing guidelines relating (...) to the treatment and resuscitation of newborns in humanitarian crises, finding little substantive ethical guidance for those providing humanitarian healthcare. We next draw on paradigm cases and published literature to identify and describe some of the major ethical questions common to these settings. We divide these questions into quality of life considerations, allocation of limited resources, and conflicting cultural norms and values. We finally suggest some preliminary recommendations to guide ethical decision‐making around resuscitation of newborns and withdrawal of treatment in humanitarian settings. (shrink)

Background: Relatively little is known about neonatologists' roles in helping families navigate the difficult decision to attempt or withhold resuscitation for a neonate delivering at the threshold...

Background Decision making regarding the treatment of neonates with poor prognoses is difficult for healthcare staff working in the neonatal intensive care unit. This study aimed to investigate the attitudes of physicians and nurses about the value of life and ethical decision making when encountering neonates with poor prognosis in the NICU. Methods This cross-sectional study was conducted in five NICUs of five hospitals in Tehran city, Iran. The attitudes of 144 pediatricians, gynecologists and nurses were assessed using the (...) questionnaire of attitude toward the value of life and agreement on intensive care management based on three hypothetical case scenarios of neonates with poor prognosis. Data were analyzed using descriptive and inferential statistics via the SPSS software. Results The negative agreement on the no initiation of intensive care measures and the discontinuation of resuscitation in neonates with poor prognosis was more than the positive agreement. Also, various factors influenced the participants’ decision making for the provision of care to neonates. Regarding the case scenarios, the participants agreed on the provision of aggressive, conservative, and palliative care with various frequencies. This study confirms the importance of healthcare providers’ perspectives and their impacts on ethical decision making. The participants favored the value or sacredness of life and agreed on the use of all therapeutic measures for saving the lives of neonates with poor prognosis. Conclusion More studies are required to improve our understandings of factors influencing ethical decision making by healthcare providers when encountering neonates with poor prognosis in NICUs. (shrink)

In current practice, decisions regarding whether or not to resuscitate infants born at the limits of viability are generally made with expectant parents during a prenatal consultation with a neonatologist. This article reviews the current practice of prenatal consultation and describes three areas in which current practice is ethically problematic: (1) risks to competence, (2) risks to information, and (3) risks to trust. It then reviews solutions that have been suggested in the literature, and the drawbacks to each. Finally, it (...) suggests that the model of prenatal consultation be altered in three ways: (1) that the prenatal consultation be viewed as a process over time, rather than a onetime event; (2) that decision making in the prenatal consultation be framed as a choice between nonresuscitation and a trial of neonatal intensive care, rather than a choice between “doing nothing” and “doing everything”; and (3) that the prenatal consultation process devote serious attention to both the transfer of information and the non-informational needs of families, rather than focus on the transfer of information alone. (shrink)

Muraskas et al. and Hefferman and Heilig present the painfully elusive ethical questions regarding decisionmaking in the care of the extremely low birth weight infants in the intensive care nursery. At what gestation or size do we resuscitate? Can we stop resuscitation after we have started? How much money is too much to spend? Is the distress of the parents of the ELBW infant, the anguish of their caregivers, and the moral and ethical uncertainty of the approach to these (...) infants too much to pay? Who speaks for the neonate: the parent, nurse, attorney, or physician? Ideally these questions should have been answered 30 years ago when modern neonatology embarked on a journey from where it could not return. A new breed of physician, called seduced by the high-tech lure and the promise of saving lives previously unsavable pioneered a lucrative and life-saving technological revolution in the care of premature newborns. This rapid advancement in neonatology occurred a few years after the death of a premature infant named Patrick Kennedy in 1963. While the country mourned, medical scientists vowed that this would not happen again. First continuous positive airway pressure, then mechanical ventilation, changed medical care of premature newborns forever. It began an era of euphoria and excitement. Neonatologists raced to push to the edge of newborn viability. What was the youngest salvageable gestational age? What was the smallest that could be saved? Yes, we dreamed, and still do dream of artificial placentas. Ethical questions took a back seat in the search for the edge because the waters were uncharted and the tough questions could not be answered without experience. WhatwastobethecostindollarsandinanguishtosavethePatrickKennedysoftheworld?Triumphsledtograveconcerns asweapproachedtheedge.However,noadvancementinneonatologyhaseverchangedtheultimatequestions. (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)

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)

Dilemmas about resuscitation and life-prolonging treatment for severely compromised infants have become increasingly complex as skills in neonatal care have developed. Quality of life and resource issues necessarily influence management. Our Institute of Medical Ethics working party, on whose behalf this paper is written, recognises that the ultimate responsibility for the final decision rests with the doctor in clinical charge of the infant. However, we advocate a team approach to decision-making, emphasising the important role of parents and nurses (...) in the process. Assessing the relative burdens and benefits can be troubling, but doctors and parents need to retain a measure of discretion; legislation which would determine action in all cases is inappropriate. Caution should be exercised in involving committees in decision-making and, where they exist, their remit should remain to advise rather than to decide. Support for families who bear the consequences of their decisions is often inadequate, and facilitating access to such services is part of the wider responsibilities of the intensive care team. The authors believe that allowing death by withholding or withdrawing treatment is legitimate, where those closely involved in the care of the infant together deem the burdens to be unacceptable without compensating benefits for the infant. As part of the process accurate and careful recording is essential. (shrink)

I was recently invited to talk about ethics with the staff of a level‐three neonatal intensive care unit. They presented a case featuring a full‐term baby born by emergency caesarean‐section after a cord prolapse that caused prolonged anoxia. Her initial pH was 6.7. She was intubated and resuscitated in the delivery room. Her Apgar score remained at 1 for ten minutes. Further evaluation over the next two days revealed severe brain damage. Her prognosis was dismal.The doctors recommended a do‐not‐resuscitate (...) order. The parents agreed. The doctors suggested a gastrostomy tube. The parents disagreed. Instead, they requested that fluid and nutrition be discontinued. The emotions in the room, as we started to discuss the case, were strong and discordant. Eventually, the conversation wound down. They turned, expectantly, to the visiting bioethicist. (shrink)

This is a new edition of a classic textbook in health care ethics, one that offers an alternative to the principle-based approach from Beauchamp and Childress (Principles of Biomedical Ethics, now in its seventh edition from OUP) and traditional Catholic approaches of Ashley and O'Rourke. In the early chapters Devettere spells out the meaning of ethics and the importance of prudential reasoning in seeking the good life. The rest of the book deals with issues and cases, including determinations of life (...) and death, reproduction and research and genetics, and the distribution of health care. In this fourth edition Devettere updates all chapters and adds new cases and new sections on the following: neuroscience, social psychology, overriding advance directives, studies on the fetus, the palliative care movement, cardiopulmonary resuscitation, pharmacists and reproductive issues, prenatal life and abortion, neonatal testing and mandatory vaccinations, the US governments' STD research in Guatemala, the emergence of biobanks, facial transplantations, genetic testing, legal issues around the Affordable Care Act, and more. This is an accessible and comprehensive textbook covering all aspects of the field. (shrink)

In a recent essay, George Annas, the legal columnist for The New England Journal of Medicine, observed that the resuscitation of extremely premature infants, even over parental objection, is not problematic because “once the child's medical status has been determined, the parents have the legal authority to make all subsequent decisions.” Annas himself is quick to concede that treatment in a high-technology neonatal intensive care unit frequently takes on a life of its own. He also acknowledges that although (...) bioethicists and courts agree that there is no ethical or legal difference between withholding or withdrawing a respirator from a patient, parents and physicians find the withdrawal much more emotionally troubling. (shrink)

I was a second-year neonatal-perinatal fellow in a meeting between other members of the neonatal intensive care team and parents who had just received devastating news about their planned-for and highly desired baby, born after what had been an uncomplicated pregnancy. At home, a little sister was waiting to meet her new brother. These conversations are never easy, but this one I found particularly disturbing. John had been born at term via emergency cesarean section after his mother, Muriel, (...) had come for a routine obstetrical visit and reported decreased fetal movement. The obstetrician had detected a very slow fetal heart rate and sent Muriel to the hospital for emergent delivery. John was born floppy, with no respiratory effort. He was resuscitated, but a heart rate was not detected until fifteen minutes after birth. Not until several months later did I discover what had troubled me so much in this family meeting. (shrink)

Differences in perception and potential disagreements between parents and professionals regarding the attitude for resuscitation at the limit of viability are common. This study evaluated in healthcare professionals whether the decision to resuscitate at the limit of viability are influenced by the way information on incurred risks is given or received. This is a prospective randomized controlled study. This study evaluated the attitude of healthcare professionals by testing the effect of information given through graphic fact sheets formulated either optimistically (...) or pessimistically. The written educational fact sheet included three graphical presentations of survival and complication/morbidity by gestational age. The questionnaire was submitted over a period of 4 months to 5 and 6-year medical students from the Geneva University as well as physicians and nurses of the neonatal unit at the University Hospitals of Geneva. Our sample included 102 healthcare professionals. Forty-nine responders were students, 32 paediatricians and 21 nurses in NICU. The received risk tended to be more severe in both groups compared to the graphically presented facts and current guidelines, although optimistic representation favoured the perception of “survival without disability” at 23 to 25 weeks. Therapeutic attitudes did not differ between groups, but healthcare professionals with children were more restrained and students more aggressive at very low gestational ages. Written information on mortality and morbidity given to healthcare professionals in graphic form encourages them to overestimate the risk. However, perception in healthcare staff may not be directly transferable to parental perception during counselling as the later are usually naïve to the data received. This parental information are always communicated in ways that subtly shape the decisions that follow. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The TripletsManeesh BatraI am a neonatologist and for the majority of my clinical time I care for babies and their families at a large University-based referral neonatal intensive care unit (NICU) in the United States. In 2003, I first visited this rural Ugandan hospital shortly after the opening of a special care baby nursery there, and have been involved with development of that program ever since.Uganda is a (...) beautiful, land-locked country in East Africa with a sordid political history. It is a developing country that is poor, mostly rural with a high fertility rate and a life expectancy of 42 years. The government spends $5 per capita per year on healthcare. The district with the hospital has a population of 500,000, the majority of which is rural. Access to health services is poor, even by Ugandan standards, and child mortality is in the higher band in the country.Most people in the region live in extended family clans. A common home is made of earth, with a grass roof, and a jerry can out front for collecting water from the well. It is an exquisitely lush landscape with fecund soil. At the hospital, there is limited electricity, lab support, medications, blood supplies, and health care workers. For the 200 bed hospital (that accommodates upwards of 400 inpatients when necessary, no one is turned away) there are four to seven Ugandan doctors, who do everything from C-sections, to colostomies, to HIV care to resuscitate babies in the NICU. For a ward of 20-80 patients there are one to two nurses, and maybe a nursing aide. Families do the majority of the care in the hospital, even in the NICU. Mum's express breast milk, perform tube feeds, wash the linens, notify staff when an IV infiltrates, and keep babies warm.Day OneAnother beautiful morning, with fresh instant coffee in hand, birds chirping and kids playing outside. It is good to be back. Over the last eight years, I've [End Page 78] made some close friends here and its good to be among them again. Every time I visit and return home, I leave a piece of me here, and bring back something new with me. This morning that feeling is overwhelming me, an incredible inspiration swells. I am not tired and I want to be busy. It is no wonder that this is where I was inspired to pursue caring for babies as my career. Over these years, it has been amazing to see the staff care for the community's babies and mums here. As an outsider, an opinioned one at that, I feel burdened at the thought of these babies dying somewhat needlessly. Is it really no-one's fault? How should one act in the face of scarcity, knowing there is a better standard to be had if only circumstances were different?I walked into the NICU to find triplets had arrived! Born at about 33 weeks they were two months early. Since they weighed around 1.5kg (about 3 lbs) each, they were at very high risk of dying —however, it was absolutely incredible to see the way they were tucked in by the skilled team. Within an hour of delivery—they were in incubators with IVs, having their hypoglycemia corrected, and two out of three were on oxygen (all of them had their O2 saturations checked). The three babies were tucked in so calmly, with the finest skill and expertise neonatal care anywhere has to offer. In stark contrast to the first admissions I witnessed years ago, the nurses now knew exactly what to do and how to do it. As a result, they had saved many lives and restored hope among the mums of the region that there was somewhere to go to get help. This success resulted in a healthy swagger among the staff because they could intervene successfully.These were spontaneous triplets to this young mum, who already had three other children. She looked tired when she walked into the NICU one hour (yes one hour) after delivering the trio, but if I hadn't known prior, there was no way to know... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Road to RedemptionAnonymous TwoI “am Dr X.* and I am a trained and board certified neonatologist with some years of experience in a high volume NICU with complex pathologies. I have been dismissed from the care of your baby by the fetal surgeon who is not trained in what he’s attempting to do,” that was how I felt when I left the operating room (OR), after performing initial (...) resuscitation on a newborn with congenital diaphragmatic hernia (CDH) with very poor prenatal prognostic indices. CDH is a diaphragm abnormality that allows abdominal organs to move into the chest and restrict lung development. The better part of me knew not to make such a statement and chose not to do so, as this was about the family and a very sick baby, not the professional wrangling of two medical teams or the expression of frustration by a neonatologist who was morally conflicted.I work in a level four Neonatal Intensive Care Unit (NICU) and a very large one by any standard. Staff turnover had been an almost nonexistent issue in previous years because of the very conducive work environment of the NICU. Every team member (physician, nurse, respiratory therapist, pharmacist, etc.) felt like a stakeholder in providing optimal outcomes for the vulnerable neonates in the NICU.As change is the only constant thing in life, the hospital management decided to explore new frontiers and open a center for fetal medicine, with the hope of being a referral center in the region. They brought in a surgeon who came highly recommended for clinical acumen, but not for interpersonal relationship skills (unbeknownst to me). This surgeon, Dr Y., was hired to oversee the fetal center and build it into a center of excellence. Since this had to be a collaborative effort, other specialties (and subspecialties) had to be involved to make this a success. A representative from each of these specialties, including bioethics, was assigned to the fetal center team.The first inkling of a major problem occurred with the very first patient. The team met for the weekly meeting, reviewed the patient’s history and made a tentative plan, which included multidisciplinary counseling. This would require either a joint meeting with the patient or individual consults with the patient at her convenience. The following week at the weekly meeting, Dr Y. informed the group that he had met with the patient and counseled her and she had agreed to an extraordinary procedure for an oral lesion. In my opinion (and that of others), this lesion was not obstructive and could be immediately dealt with at delivery by an Otolaryngologist (ENT) surgeon, without putting the mother at risk for complications arising from the procedure being offered. There was a long discussion about why this was inappropriate [End Page E1] and why further imaging, discussion between the subspecialties and counseling should have been done prior to making this delivery plan. All felt this delivery plan could be remedied prior to delivery. However the surgeon had made plans with the obstetric team (who were at his mercy for financial/ political reasons) to continue with this plan. On the day of delivery, the NICU resuscitation team was called to another operating room instead of the labor and delivery room. I was even more appalled when I realized that the oral lesion was the size of a peanut! I felt like I failed in my obligation of veracity by avoiding the mother’s questions regarding the necessity of the procedure. Every member of my team felt the same and on several occasions I had to reassure concerned nurses that this was an aberrant occurrence that would not repeat itself... so I thought.I informed my departmental chairperson, Dr Z., who had a conversation with the fetal surgeon, Dr. Y., to inform him of my concerns and the effect of Dr. Y.’s actions on my group (physician, nurse practitioner, nurses). This led to being labeled unsupportive of Dr Y.’s goals and caused a less than cordial relationship towards me and the entire NICU group. The next week a picture of Dr Y. and the parents with the baby was on the front page... (shrink)

The neonatologist was describing the dire situation, the complexity of the fetus's anomalies, and the options—comfort care, some resuscitation—and finished by saying, “We would not recommend ECMO …” “We would not recommend” is a curious phrase. There is something ambiguous, very nebulous about it, something passive, noncommittal, maybe even deflective. As a bioethics researcher, I wondered how this phrase is interpreted, how it influences parents' moral deliberation over their options.

This article questions social constructionists' claims to introduce Wittgenstein's philosophy to psychology. The philosophical fiction of a neonate Crusoe is introduced to cast doubt on the interpretations and use of the private language argument to support a new psychology developed by the constructionists. It is argued that a neonate Crusoe's viability in philosophy and apparent absence in psychology offends against the integrity of the philosophical contribution Wittgenstein might make to psychology. The consequences of accepting Crusoe's viability are explored as they (...) appear in both philosophy and psychology. (shrink)

A 2017 Nature report was widely touted as hailing the arrival of the artificial womb. But the scientists involved claim their technology is merely an improvement in neonatal care. This raises an under-considered question: what differentiates neonatal incubation from artificial womb technology? Considering the nature of gestation—or metaphysics of pregnancy—(a) identifies more profound differences between fetuses and neonates/babies than their location (in or outside the maternal body) alone: fetuses and neonates have different physiological and physical characteristics; (b) characterizes (...) birth as a physiological, mereological and topological transformation as well as a (morally relevant) change of location; and (c) delivers a clear distinction between neonatal incubation and ectogestation: the former supports neonatal physiology; the latter preserves fetal physiology. This allows a detailed conceptual classification of ectogenetive and ectogestative technologies according to which the 2017 system is not just improved neonatal incubation, but genuine ectogestation. But it is not an artificial womb, which is a term that is better put to rest. The analysis reveals that any ethical discussion involving ectogestation must always involve considerations of possible risks to the mother as well as her autonomy and rights. It also adds a third and potentially important dimension to debates in reproductive ethics: the physiological transition from fetus/gestateling to baby/neonate. (shrink)

The growing support for voluntary active euthanasia is evident in the recently approved Dutch Law on Termination of Life on Request. Indeed, the debate over legalized VAE has increased in European countries, the United States, and many other nations over the last several years. The proponents of VAE argue that when a patient judges that the burdens of living outweigh the benefits, euthanasia can be justified. If some adults suffer to such an extent that VAE is justified, then one may (...) conclude that some children suffer to this extent as well. In an attempt to alleviate the suffering of extremely ill neonates, the University Medical Center Groningen developed a protocol for neonatal euthanasia. In this article, I first present the ethical justifications for VAE and discuss how these arguments relate to euthanizing ill neonates. I then argue that, even if one accepts the justification for VAE in adults, neonatal euthanasia cannot be supported, primarily because physicians and parents can never accurately assess the suffering of children. I argue that without the testament of the patient herself as to the nature and magnitude of her suffering, physicians can never accurately weigh the benefits and burdens of a child’s life, and therefore any such system would condemn to death some children whose suffering is not unbearable. I conclude that because the primary duty of physicians is to never harm their patients, neonatal euthanasia cannot be supported. (shrink)

Until the 1970s, models of early infancy tended to depict the young child as internally preoccupied and incapable of processing visual-tactile data from the external world. Meltzoff and Moore's groundbreaking studies of neonatal imitation disprove this characterization of early life: They suggest that the infant is cognizant of its external environment and is able to control its own body. Taking up these experiments, theorists argue that neonatal imitation provides an empirical justification for the existence of an innate ability (...) to engage in social communication. Since later imitation is taken as a benchmark for self- and other-awareness, theorists claim that a proto- or primitive self must exist in the infant. This paper takes up the issue of whether or not neonatal imitation does provide us with a ground to argue against developmental accounts that consider self-awareness to be a later acquisition. I argue that the enthusiasm over neonatal imitation is premature. Psychological studies that claim to prove neonatal imitation do not provide sufficient grounds for dismissing alternate philosophical and psychological theories about the self as being a post-birth "event" rather than an intrinsic condition. Therefore, I argue that there is no compelling reason to suppose that we come to the world with a primitive sense of self- or other-awareness. (shrink)

Neonatal suffering has been the focus of recent debate in pediatric bioethics and suffering theory. How to access and conceptualize the suffering that can be attributed to newborns? How to discern the suffering of newborns who, due to being non-neurotypical, may have a short life and severe neurocognitive disabilities, in addition to being entirely dependent on people or life-sustaining technologies? Phenomenology has provided valuable tools for analysing human experiences of suffering, but its application to the neonatal suffering experience (...) is not without fundamental challenges. In this article, I will consider recent contributions to elucidating the phenomenon of neonatal suffering, especially those in the field of non-experiential theories of suffering. Based on this review, a recent phenomenological approach to suffering will be examined. Explicitly directed toward narrative persons, this approach appears to be inherently limited in elucidating the phenomenon of neonatal pediatric suffering. Nevertheless, a suggestion will be offered to partially elaborate the theoretical foundations of a phenomenological theory of neonatal suffering. This suggestion points to the program of a phenomenology of the existential feelings of newborns. (shrink)

Over 35 years ago, Meltzoff and Moore (1977) published their famous article ‘Imitation of facial and manual gestures by human neonates’. Their central conclusion, that neonates can imitate, was and continues to be controversial. Here we focus on an often neglected aspect of this debate, namely on neonatal spontaneous behaviors themselves. We present a case study of a paradigmatic orofacial ‘gesture’, namely tongue protrusion and retraction (TP/R). Against the background of new research on mammalian aerodigestive development, we ask: How (...) does the human aerodigestive system develop and what role does TP/R play in the neonate’s emerging system of aerodigestion? We show that mammalian aerodigestion develops in two phases: (1) from the onset of isolated orofacial movements in utero to the post-natal mastery of suckling at 4 months after birth, and; (2) thereafter, from preparation to the mastery of mastication and deglutition of solid foods. Like other orofacial stereotypies, TP/R emerges in the first phase and vanishes prior to the second. Based upon recent advances in activity-driven early neural development, we suggest a sequence of three developmental events in which TP/R might participate: the acquisition of tongue control, the integration of the central pattern generator for TP/R with other aerodigestive CPGs, and the formation of connections within the cortical maps of S1 and M1. If correct, orofacial stereotypies are crucial to the maturation of aerodigestion in the neonatal period but also unlikely to co-occur with imitative behavior. (shrink)

Despite tremendous advances in medical care for critically ill newborn infants, caregivers in neonatal intensive care units still struggle with how to approach those patients whose prognoses appear to be the most grim, and whose treatments appear to be the most futile. Although the practice of passive neonatal euthanasia, from a moral perspective, has been widely condoned, those clinicians and families involved in such cases may still be found legally guilty of child abuse or even manslaughter. Passive (...) class='Hi'>neonatal euthanasia remains both a moral dilemma and a legal ambiguity. Even the definition of passive euthanasia remains unclear. This manuscript reviews the basic moral and legal considerations raised by the current practice of neonatal euthanasia, and examines the formal position statements of the American Medical Association and the American Academy of Pediatrics. The paper concludes by emphasising the need, at least in the United States, to clarify the legal status of this relatively common medical practice. (shrink)

Cardiopulmonary Resuscitation is the default response for persons who suffer cardiac or pulmonary arrest, except in cases in which there exists a do-not-resuscitate order. This default mindset is based on the rule of rescue and the ethical principle of beneficence. However, due to the lack of efficacy and the high risk of potential harm inherent in CPR, this procedure should not be the default intervention for cardiac or pulmonary arrest. Although CPR is a lifesaving medical intervention, it has limited (...) positive results and the potential for multiple harmful consequences. Given the limited potential of CPR as a medical procedure, clinicians and patients must be educated regarding its limited potential, and procedures must be developed to help determine when it is appropriate as a medical intervention. (shrink)

During recent years we have seen and assisted at a significantly increased number of twin births. The main reason for this increase in the frequency of twin births is the increasing number of so called “induced pregnancies”, whether through hormonal stimulation or artificial insemination techniques.It is well known1 that twins have high mortality and morbidity rates during the perinatal and the following period. The characteristics of conception and pregnancy can determine the development of several pathologies, including prematurity and intrauterine growth (...) retardation, …. (shrink)

This paper offers an overview of "the species problem", arguing for a view of species as homeostatic property cluster kinds, positioning the resulting form of realism about species as an alternative to the claim that species are individuals and pluralistic views of species. It draws on taxonomic practice in the neurosciences, especially of neural crest cells and retinal ganglion cells, to motivate both the rejection of the species-as-individuals thesis and species pluralism.

One hundred inpatients on an acute hospital elderly care unit and 43 of their relatives were interviewed shortly before hospital discharge. Eighty per cent of elderly patients and their relatives were aware of cardiopulmonary resuscitation (CPR). Television drama was their main source of information. Patients and relatives overestimated the effectiveness of CPR. Eighty-six per cent of patients were willing to be routinely consulted by doctors about their own CPR status, but relatives were less enthusiastic about routine consultation. Patients' and (...) relatives' views about the appropriateness of CPR did not differ significantly. Seventeen percent of patients did not desire CPR. However, 64 per cent of patients were ultimately willing to follow their doctor's advice about the appropriateness of CPR. The conclusion reached is that mentally competent, elderly patients but not their relatives should be routinely consulted about their own desire for CPR in order to avoid resuscitating patients against their wishes. Further research is required to find out how patients would feel about resuscitation if they were terminally ill or chronically confused, and how carers would feel about resuscitating such patients. (shrink)

Retinopathy of prematurity (ROP) is a complex neonatal disorder with multiple contributing factors. In this paper we have mounted the evidence in support of the proposal that neonatal sepsis meets all requirements for being a cause of ROP (not a condition, mechanism, or even innocent bystander) by means of initiating the early stages of the pathomechanism of ROP occurrence, systemic inflammation. We use the model of etiological explanation, which distinguishes between two overlapping processes in ROP causation. It can (...) be shown that sepsis can initiate the early stages of the pathomechanism via systemic inflammation (causation process) and that systemic inflammation can contribute to growth factor aberrations and the retinal characteristics of ROP (disease process). The combined contribution of these factors with immaturity at birth (as intrinsic risk modifier) and prenatal inflammation (as extrinsic facilitator) seems to provide a cogent functional framework of ROP occurrence. Finally, we apply the Bradford Hill heuristics to the available evidence. Taken together, the above suggests that neonatal sepsis is a causal inducer of ROP. (shrink)

This article looks at the history of the stem cell as an experimental life-form and situates it within the context of biological theories of cellular ageing which emerged in the 1960s, under the banner of ‘biogerontology’. The field of biogerontology, I argue, is crucially concerned not only with the internal limits to a cell's lifespan, but also with the possibility of overcoming limits. Hence, the sense of ‘revolution’ that has surrounded the isolation of human embryonic stem cells. The article goes (...) on to situate the problematic of cellular ageing within the larger historical transition from Fordist to post-Fordist modes of production – a transition whose effects on the life sciences have been insufficiently theorized – and points to resonances between the concerns of biogerontology and an emerging political rhetoric on the crisis of ageing and limits to growth. Having surfaced in parallel with the neo-liberal euphoria of the 1990s, the field of regenerative medicine presents itself as a biomedical solution to the problem of limits to growth. What is at stake in the contemporary biosciences, I suggest, is not so much the mass commodification of life itself as its transformation into a source of speculative surplus value. (shrink)

Neonatal extracorporeal membrane oxygenation (ECMO), a technology for the treatment of respiratory failure in newborns, is used as a case study to examine statistical and ethical aspects of clinical trials and to illustrate a proposed 'ethics of evidence', an approach to medical uncertainty within the context of contemporary biomedical ethics. Discussion includes the twofold aim of the ethics of evidence: to clarify the role of uncertainty and scientific evidence in medical decision-making, and to call attention to the need to (...) confront the irreducible nature of uncertainty. (shrink)

With the potential to process the world's agricultural and food waste, provide sustainable fodder for livestock, aquaculture, and pet animals, as well as act as a source of novel biomolecules, the black soldier fly, Hermetia illucens, has been launched into the leading position within the insects as feed industry. Fulfilment of these goals, however, requires mass‐rearing facilities to have a steady supply of neonate larvae, which in‐turn requires an efficient mating process to yield fertile eggs; yet, little is known about (...) adult reproductive behavior, nor what physiological factors lead to its emergence. Moreover, fertile egg production tends to be highly variable in colony. Therefore, this review brings together what is currently known of the organismal biology of H. illucens, compiling information on adult morphology, physiology, biogeography, genomics, and behavioral ecology. As a holistic synthesis, it highlights several directions of interest for research to follow. (shrink)

BackgroundConcerns about decision making related to resuscitation have led to two important challenges in the courts resulting in new legal precedents for decision-making practice. Systematic research investigating the experiences of doctors involved in decisions about resuscitation in light of the recent changes in law remains lacking.AimTo analyse the practice of resuscitation decision making on hospital wards from the perspectives of doctors.DesignThe data presented in this paper were collected as part of a wider research study of end-of-life care (...) in an acute hospital setting. Data collection comprised ethnographic non-participant observation on two acute hospital wards and individual interviews with patients, relatives and healthcare professionals caring for patients thought to be approaching the end of life. Data were analysed using a constructivist grounded theory approach.ResultsDiscussions and decision making about resuscitation present many challenges for those involved on acute medical wards. The data highlight the potential for multiple interpretations of legal precedents, creating misunderstandings that may impact patient care in less positive ways.ConclusionsThis paper provides unique insights into how doctors respond to the changing medico-legal culture and the subsequent effects on patient care. It demonstrates how the juridification of medical practice can occur. It highlights the potential benefit of a structure to support clinicians, patients and relatives in discussing and navigating decisions around care at the end of life in line with the patient’s wishes and preferences. Recommendations for future research are made and legal ramifications are discussed. (shrink)

The current rise of neurodevelopmental disorders poses a critical need to detect risk early in order to rapidly intervene. One of the tools pediatricians use to track development is the standard growth chart. The growth charts are somewhat limited in predicting possible neurodevelopmental issues. They rely on linear models and assumptions of normality for physical growth data – obscuring key statistical information about possible neurodevelopmental risk in growth data that actually has accelerated, non-linear rates-of-change and variability encompassing skewed distributions. Here, (...) we use new analytics to profile growth data from 36 newborn babies that were tracked longitudinally for 5 months. By switching to incremental (velocity-based) growth charts and combining these dynamic changes with underlying fluctuations in motor performance – as the transition from spontaneous random noise to a systematic signal – we demonstrate a method to detect very early stunting in the development of voluntary neuromotor control and to flag risk of neurodevelopmental derail. (shrink)

The COVID-19 Pandemic a stress test for clinical medicine and medical ethics, with a confluence over questions of the proportionality of resuscitation. Drawing upon his experience as a clinical ethicist during the surge in New York City during the Spring of 2020, the author considers how attitudes regarding resuscitation have evolved since the inception of do-not-resuscitate orders decades ago. Sharing a personal narrative about a DNR quandry he encountered as a medical intern, the author considers the balance of (...) patient rights versus clinical discretion, warning about the risk of resurgent physician paternalism dressed up in the guise of a public health crisis. (shrink)

The emergence of new obstetrical and neonatal technologies, as well as more aggressive clinical management, has significantly improved the survival of extremely low birth weight infants. This development has heightened concerns about the limits of viability. ELBW infants, weighing less than 1,000 grams and no larger than the palm of one's hand, are often described as of late twentieth century technology. Improved survivability of ELBW infants has provided opportunities for long-term follow-up. Information on their physical and emotional development contributes (...) to developing standards of practice regarding their care. (shrink)

Neonatal pediatrics has made stunning and completely unprecedented progress in recent years. Nonetheless, an increasing number of voices now ask, Where is this field of medicine going? Is it, dare one ask, even headed in the right direction? These are reasonable questions, but first we need to know where this subspecialty of pediatrics has been. The current phenomenon is all the more remarkable because it differs so completely from the past.

In the context of 'Do-not-resuscitate' (DNR) decisions, there is a lack of information in the UK on the opinions of patients and prospective patients. Written anonymous responses to questionnaires issued to 322 out-patient subjects showed that 97 per cent would opt for cardiopulmonary resuscitation (CPR) in their current state of health. In the hypothetical circumstance of having advanced senile dementia only 10 per cent would definitely want CPR, with 75 per cent preferring not to have CPR. There were no (...) significant correlations between the responses and sex or age. Of 270 patients asked verbally if they found the questions disturbing, none said they did. These findings show that the great majority of patients would not wish CPR if severely senile, and that patients are not disturbed by questions relating to their choice for or against CPR. This should encourage further investigations of patients' opinions on CPR in a broader range of conditions, and greater use of DNR orders. (shrink)