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)

A published case report of an infant who inadvertently developed remission of HIV viral expression has prompted research to determine if this observation is reproducible and can offer a potentially novel clinical approach to inducing sustained viral remission of HIV.Typically HIV-infected mothers receive antiretroviral therapy before delivery and infants receive between one and three drugs at “low doses” for prevention. In the case report, the mother delivered before she could receive ART. The infant was placed on a three-drug approach with (...) “higher” doses by her doctor than are typically used for treatment. When HIV infection was confirmed, the three-drug regimen was continued. For most.. (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 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)

Background:Neonatal nurse practitioners have become the frontline staff exposed to a myriad of ethical issues that arise in the day-to-day environment of the neonatal intensive care unit. However, ethics competency at the time of graduation and after years of practice has not been described.Research aim:To examine the ethics knowledge base of neonatal nurse practitioners as this knowledge relates to decision making in the neonatal intensive care unit and to determine whether this knowledge is reflected (...) in attitudes toward ethical dilemmas in the neonatal intensive care unit.Research design:This was a prospective cohort study that examined decision making at the threshold of viability, life-sustaining therapies for sick neonates, and a ranking of the five most impactful ethical issues.Participants and research context:All 47 neonatal nurse practitioners who had an active license in the State of Mississippi were contacted via e-mail. Surveys were completed online using Survey Monkey software.Ethical considerations:The study was approved by the University of Mississippi Medical Center Institutional Review Board (IRB; #2015-0189).Findings:Of the neonatal nurse practitioners who completed the survey, 87.5% stated that their religious practices affected their ethical decision making and 76% felt that decisions regarding life-sustaining treatment for a neonate should not involve consultation with the hospital’s legal team or risk management. Only 11% indicated that the consent process involved patient understanding of possible procedures. Participating in the continuation or escalation of care for infants at the threshold of viability was the top ethical issue encountered by neonatal nurse practitioners.Discussion:Our findings reflect deficiencies in the neonatal nurse practitioner knowledge base concerning ethical decision making, informed consent/permission, and the continuation/escalation of care.Conclusion:In addition to continuing education highlighting ethics concepts, exploring the influence of religion in making decisions and knowing the most prominent dilemmas faced by neonatal nurse practitioners in the neonatal intensive care unit may lead to insights into potential solutions. (shrink)

This paper suggests that medical ethics is often based on assumptions, commonly shared in modern medicine, which can cause problems and which need to be questioned. Two contrasting yet complementary ways of thinking about ethical dilemmas in neonatal care are described as the 'separation' and the 'attachment' approaches. The contribution of medical ethics to the substance and quality of discussions between doctors and parents is considered.

This article examines the involvement of neonatal nurses in ethical issues, achieved through a survey of Australian neonatal nurses. The aim was to discover if nurses were involved in ethical decisions, to examine various categories of neonates and the concerns that nurses felt about them, and to determine the extent to which nurses saw themselves as advocates. A response rate of 65% was achieved from nurses in two states who worked in intensive care and special care nurseries. The (...) findings show that nurses were more likely to be involved in clinical decision making than in ethical decision making, showed the greatest concern for infants who had an uncertain prognosis, and saw themselves as advocates for their patients. The issues surrounding these findings are examined. (shrink)

Background In neonatal intensive care, a child's death is often preceded by a medical decision. Nurses, social workers and pastors, however, are often excluded from ethical case deliberation. If multiprofessional ethical case deliberations do take place, participants may not always know how to perform to the fullest. Setting A level-IIID neonatal intensive care unit of a paediatric teaching hospital in the Netherlands. Methods Structured multiprofessional medical ethical decision-making (MEDM) was implemented to help overcome problems experienced. Important features were: (...) all professionals who are directly involved with the patient contribute to MEDM; a five-step procedure is used: exploration, agreement on the ethical dilemma/investigation of solutions, analysis of solutions, decision-making, planning actions; meetings are chaired by an impartial ethicist. A 15-item questionnaire to survey staff perceptions on this intervention just before and 8 months after implementation was developed. Results Before and after response rates were 91/105 (87%) and 85/113 (75%). Factor analysis on the questionnaire suggested a four-factor structure: participants' role; structure of MEDM; content of ethical deliberation; and documentation of decisions/conclusions. Effect sizes were 1.67 (p<0.001), 0.69 (p<0.001) and 0.40 (p<0.01) for the first three factors respectively, but only 0.07 (p=0.65) for the fourth factor. Nurses' perceptions of improvement did not significantly exceed those of physicians. Conclusion Professionals involved in ethical case deliberation perceived that the process of decision-making had improved; they were more positive about the structure of meetings, their own role and, to some extent, the content of ethical deliberation. Documentation of decisions/conclusions requires further improvement. (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)

Next SectionObjectives A statute enacted in 2005 modified the legislative framework of the rights of terminally ill persons in France. Ten years after the EURONIC study, which described the self-reported practices of neonatal caregivers towards ethical decision-making, a new study was conducted to assess the impact of the new law in neonatal intensive care units (NICU) and compare the results reported by EURONIC with current practices. Setting and design The study was carried out in the same two NICU (...) as in the EURONIC qualitative study. A third centre was added to increase the sample size. From February to October 2007, 19 physicians and 17 nurses participated in semistructured interviews very similar to those for EURONIC. Content analysis identified the recurring themes emerging from the interviews. Results Compared with the EURONIC results, the caregivers reported that they pay greater attention to the views of parents and provided respectful support to the neonates when life-sustaining treatment is withdrawn. Active termination of life has become exceptional. The possibility of withdrawal of treatment, the administration of sedatives to control pain even at the risk of hastening death, the emphasis on sparing parents the burden of decision, and the relative ignorance of the law were very similar to the EURONIC findings. Conclusion Both the medical and the legal regulation of practices has allowed more dialogue with the parents and more humane care for dying newborns. A new European study is necessary to investigate the possible changes in practices and attitudes also in other countries. (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)

This article will be concerned with the phenomenon of vitality, which emerged as one of the main findings in a larger grounded theory study about life and death decisions in hospitals' neonatal units. Definite signs showing the new-born infant's energy and vigour contributed to the clinician's judgements about life expectancy and the continuation or termination of medical treatment. In this paper we will discuss the normative importance of vitality as a diagnostic cue and will argue that vitality, as a (...) sign perceived by doctors and nurses, has moral significance and represents a legitimate contribution to clinical decision-making in difficult cases where the child's life is at stake. We will argue that these clinical intuitions can be justified on a moral basis but only with certain qualifications that accounts for a certain objectivity and intersubjective reliability in the therapeutic judgements. (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)

Research teams have used extra-uterine systems to support premature fetal lambs and to bring them to maturation in a way not previously possible. The researchers have called attention to possible implications of these systems for sustaining premature human fetuses in a similar way. Some commentators have pointed out that perfecting these systems for human fetuses might alter a standard expectation in abortion practices: that the termination of a pregnancy also entails the death of the fetus. With Biobags, it might be (...) possible, some argue, that no woman has the right to expect that outcome if the technology is able to sustain fetal lifeafteran abortion. In order to protect the expectation that the termination of a pregnancy always entails the death of the fetus, Elizabeth Romanis has argued that fetuses sustained in Biobags have a status different than otherwise ‘born’ children. In support of that view, she argues that these ‘gestatelings’ are incapable of independent life. This argument involves a misunderstanding of the gestational support involved, as well as a misapprehension of neonatology practice. Here, we argue that any human fetus sustained in a Biobag would be as ‘independent’ as any other premature infant, and just as ‘born’. Neonatologists would seem to have certain presumptive moral responsibilities toward any human fetus gestating in a Biobag. It remains a separate question whether the perfection and widespread application of Biobags for premature human beings would or should alter the expectation that ending a pregnancy also entails fetal death. (shrink)

Recently published consensus recommendations on pediatric decision-making by Salter and colleagues (2023) did not address neonatal decision-making, due to the unique complexities of neonatal care. This essay explores three areas that impact neonatal decision-making: legal and policy considerations, rapid technological advancement, and the unique emotional burdens faced by parents and clinicians during the medical care of neonates. The authors evaluate the six consensus recommendations related to these considerations and conclude that the consensus recommendations apply to neonates.

A literature review of 98 articles concerning clinical pain research in newborn infants was conducted to evaluate how researchers report the ethical issues related to their studies and how journals guide this reporting. The articles were published in 49 different scientific journals. The ethical issues most often mentioned were parental informed consent (94%) and ethical review approval (87%). In 75% of the studies the infants suffered pain during the research when placebo, no treatment or otherwise inadequate pain management was applied. (...) Discussion about benefits versus harm to research participants was lacking. A quarter of the journals did not have any ethical guidelines for submitted manuscripts. We conclude that ethical considerations did not play a significant role in the articles studied. Missing and superficial guidelines enable authors to offer studies with fragile research ethics. (shrink)

Research teams have used extra-uterine systems to support premature fetal lambs and to bring them to maturation in a way not previously possible. The researchers have called attention to possible implications of these systems for sustaining premature human fetuses in a similar way. Some commentators have pointed out that perfecting these systems for human fetuses might alter a standard expectation in abortion practices: that the termination of a pregnancy also entails the death of the fetus. With Biobags, it might be (...) possible, some argue, that no woman has the right to expect that outcome if the technology is able to sustain fetal life _after_ an abortion. In order to protect the expectation that the termination of a pregnancy always entails the death of the fetus, Elizabeth Romanis has argued that fetuses sustained in Biobags have a status different than otherwise ‘born’ children. In support of that view, she argues that these ‘gestatelings’ are incapable of independent life. This argument involves a misunderstanding of the gestational support involved, as well as a misapprehension of neonatology practice. Here, we argue that any human fetus sustained in a Biobag would be as ‘independent’ as any other premature infant, and just as ‘born’. Neonatologists would seem to have certain presumptive moral responsibilities toward any human fetus gestating in a Biobag. It remains a separate question whether the perfection and widespread application of Biobags for premature human beings would or should alter the expectation that ending a pregnancy also entails fetal death. (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)

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)

What should be the role of an institutional ethics committee in resolving conflict concerning patient care decisions in the neonatal intensive care unit? This question takes on added importance in light of recent court decisions which suggest that IEC deliberations may serve as persuasive evidence in court, of proposed state regulations that would establish an IEC as an alternative to judicial review, and of recent Joint Commission on Accreditation of Healthcare Organizations guidelines that require an institutional policy on (...) limitation or withdrawal of treatment to include a specified mechanism for resolving conflict. Unfortunately, despite these developments, prospective case consultation remains one of the most controversial and poorly understood aspects of IEC functions. Questions and concerns persist about the relation the IEC has and should have to actual decisions in specific cases.We briefly examine the clinical, organizational, and regulatory complexity of the NICU environment and suggest five potential sources of uncertainty, disagreement, and conflict among parent and NICU staff. (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)

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)

What should be the role of an institutional ethics committee in resolving conflict concerning patient care decisions in the neonatal intensive care unit? This question takes on added importance in light of recent court decisions which suggest that IEC deliberations may serve as persuasive evidence in court, of proposed state regulations that would establish an IEC as an alternative to judicial review, and of recent Joint Commission on Accreditation of Healthcare Organizations guidelines that require an institutional policy on (...) limitation or withdrawal of treatment to include a specified mechanism for resolving conflict. Unfortunately, despite these developments, prospective case consultation remains one of the most controversial and poorly understood aspects of IEC functions. Questions and concerns persist about the relation the IEC has and should have to actual decisions in specific cases.We briefly examine the clinical, organizational, and regulatory complexity of the NICU environment and suggest five potential sources of uncertainty, disagreement, and conflict among parent and NICU staff. (shrink)

This article examines whether a policy of mandatory neonatal eye prophylaxis is ethically justified within the Canadian context. An existing framework for public health ethics is used to examine criteria that would justify state intervention in parental decision-making authority in order to protect public health. The benefits, harms, and utility of mandatory neonatal eye prophylaxis are described. Established criteria for the infringement of basic individual liberties in the interests of public health, including effectiveness, proportionality, necessity, least infringement (...) and public justification, are considered. The extent and limits of parental decision-making authority are then discussed, and conditions that warrant state intervention in parental decision-making based on the harm principle are reviewed. Ultimately, infringement of parental authority is not deemed to be necessary to protect public health or to protect the newborn in this case and existing circumstances do not meet any criteria that would justify such an infringement. Mandatory eye prophylaxis is found not to be ethically justified in the current Canadian context. (shrink)

International child rights law has the potential to change the way children are viewed and engaged by all social actors. It provides a child-centered perspective on all areas of children’s lives, including research with neonates. It differs from some bioethical perspectives by clearly articulating affirmative obligations owed to children and requiring rigorous monitoring mechanisms. The CRC’s focus on affirmative obligations and establishment of monitoring mechanisms provide additional useful elements that are not present in the dominant form of American pediatric bioethics.An (...) in-depth introduction to child rights and the U.N. Convention on the Rights of the Child is presented by Lansdown.. (shrink)

One barrier to optimal pain management in the neonatal intensive care unit is how the healthcare community perceives, and therefore manages, neonatal pain. In this paper, we emphasise that healthcare professionals not only have a professional obligation to care for neonates in the NICU, but that these patients are intrinsically worthy of care. We discuss the conditions that make neonates worthy recipients of pain management by highlighting how neonates are vulnerable to pain and harm, and completely dependent on (...) others for pain management. We argue for a relational account of ethical decision-making in the NICU by demonstrating how an increase in vulnerability and dependence may be experienced by the healthcare community and the neonate’s family. Finally, an ethical framework for decisions around neonatal pain management is proposed, focussing on surrogate decision-making and the importance of compassionate action through both a reflective and an affective empathy. As empathy can be highly motivating against pain, we propose that, in addition to educational programs that raise awareness and knowledge of neonatal pain and pain management, healthcare professionals must cultivate empathy in a collective manner, where all members of the NICU team, including parents, are compassionate decision-makers. (shrink)

Three common ethical principles for establishing the limits of parental authority in pediatric treatment decision making are the harm principle, the principle of best interest, and the threshold view. This paper consider how these principles apply to a case of a premature neonate with multiple significant comorbidities whose mother wanted all possible treatments, and whose health care providers wondered whether it would be ethically permissible to allow him to die comfortably despite her wishes. Whether and how these principles help to (...) understand what was morally right for the child is questioned. The paper concludes that the principles were of some value in understanding the moral geography of the case, but that the case reveals common bioethical principles for medical decision making are problematically value-laden because they are inconsistent with the widespread moral value of medical vitalism. (shrink)

One of the first areas of ethical concern in medicine was the neonatal intensive care unit. Questions first seen in this context soon entered the discourse of bioethical debate. The history of the ethics of neonatal care is described from the context of neonatology, and the emerging principles are outlined.

Background: Studies from Western countries show that doctors working in neonatal intensive care units find withdrawal of treatment to be their most difficult ethical dilemma. There is less knowledge of how this is experienced in other economic, cultural, religious and educational contexts.Objectives: To explore and describe how Indian doctors experience ethical dilemmas concerning the withdrawal of treatment among critically sick and/or premature neonates.Method: Qualitative data from interviews was analysed according to Giorgi's phenomenological approach. The subjects were 14 doctors with (...) various levels of neonatal experience, recruited from two state‐owned NICUs in India. Main outcome measures: description reflecting the nature of ethical dilemmas and how they are experienced.Results: All doctors reported situations where the question of withdrawal of treatment was experienced as the worst part of their job. They felt that they lacked training in how to handle such dilemmas, and some had never talked about ethics before. They were especially concerned about non‐medical considerations that do not feature in current treatment guidelines. In describing their personal experiences, the informants mentioned their sense of responsibility in situations where they were aware that their decisions would influence a family's economy and reputation, availability of food and education for siblings, other children's access to equipment in the unit, and the use of resources in an underprivileged population. Sometimes lack of resources, usually ventilators, forced them to make decisions about which babies should get the chance to live. Other reported dilemmas included difficulties co‐operating with uneducated and poor parents.Conclusion: While Western doctors seem to focus on the rights and problems of the individual child, Indian doctors tend to refer to consequences for other children, for parents and society. There is a need for further research in this field, and for the development of guidelines on how to cope with differences in resources, and how to handle different patient groups’ cultural and religious concerns. (shrink)

Advances in life-sustaining medical technology as applied to neonatal cases frequently present ethical concerns with a strong emotional component. Neonates delivered in the gestation period of approximately 23held hostagemoral distress” regarding aggressive courses of treatment for some patients. Some of this distress results from a feeling of powerlessness regarding treatment decisions, coupled with a high intensity of hands-on contact with the patients and family. Lack of authority coupled with high responsibility may itself be a recipe for a different kind (...) of futility. (shrink)

Opinion about neonatal male circumcision is deeply divided. Some take it to be a prophylactic measure with unequivocal and significant health benefits, while others consider it a form of child abuse. We argue against both these polar views. In doing so, we discuss whether circumcision constitutes bodily mutilation, whether the absence of the child's informed consent makes it wrong, the nature and strength of the evidence regarding medical harms and benefits, and what moral weight cultural considerations have. We conclude (...) that nontherapeutic circumcision of infant boys is a suitable matter for parental discretion. (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)

Introduction Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective? Method A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, treatment effect, cost effectiveness (...) and evidence for neonates born at 28 and 32 GAW. Results The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the child's best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India. Conclusion Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders. (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)

The author considers the notion that the doctor is the sole arbiter of what happens to a defective neonate; how this is a logical confusion of scientific assessment with value judgment. The utilitarian concept found in a democracy is taken to be the superior source of ethics which ought to guide doctors. Finally, the logical conclusion is claimed to be that legislation alone will effectively enunciate society's standards.

Doctors and nurses at the neonatal intensive-care unit at The University Hospital, Rigshospitalet, in Copenhagen, Denmark regularly find themselves in ethically challenging and potentially distressing situations concerning the life of ill newborn babies. In collaboration with the neonatal intensive-care unit, my project was to develop a method that could stimulate systematically dialogical moral inquiry within everyday clinical practice. My four months of ethnographic fieldwork at the neonatal intensive-care unit generated four fundamental themes that make up the scaffold (...) of the developed model for ethical deliberation and decision making. The model is a reflective tool to be used by health care professionals in situ. It provides a structured and a systematic framework for dialogue that can clarify the obscurities of a case and give argumentative support for ethical decisions. This article explains how the 4C model was developed and whereof it consists. (shrink)

Background: In the neonatal intensive care unit, immigrant parents may experience even greater anxiety than other parents, particularly if they and the nurses do not share a common language. Aim: To explore the complex issues of trust and the nurse–mother relationship in neonatal intensive care units when they do not share a common language. Design and methods: This study has a qualitative design. Individual semi-structured in-depth interviews and two focus group interviews were conducted with eight immigrant mothers and (...) eight neonatal intensive care unit nurses, respectively. Data analysis was based on Braun and Clarke’s thematic analytic method. Ethical considerations: Approval was obtained from the hospital’s Scientific Committee and the Data Protection Officer. Interviewees were informed in their native language about confidentiality and they signed an informed consent form. Results: Trust was a focus for mothers and nurses alike. The mothers held that they were satisfied that their infants received the very best care. They seemed to find the nurses’ care and compassion unexpected and said they felt empowered by learning how to care for their infant. The nurses discussed the mother’s vulnerability, dependency on their actions, attitudes and behaviour. Discussion: Lack of a common language created a challenge. Both parties depended on non-verbal communication and eye contact. The nurses found that being compassionate, competent and knowledgeable were important trust-building factors. The mothers were relieved to find that they were welcome, could feel safe and their infants were well cared for. Conclusion: The parents of an infant admitted to the neonatal intensive care unit have no choice but to trust the treatment and care their infant receives. Maternal vulnerability challenges the nurse’s awareness of the asymmetric distribution of power and ability to establish a trusting relationship with the mother. This is particularly important when mother and nurse do not share a verbal language. The nurses worked purposefully to gain trust. (shrink)