Nurses working in a newborn intensive care unit report that treatment decision disagreements for infants in their care may lead to ethical dilemmas involving all health-care providers. Applying Rest’s Four-Component Model of Moral Action as the theoretical framework, this study examined the responses of 224 newborn intensive care unit nurses to the Nurses Ethical Involvement Survey. The three most frequent actions selected were as follows: talking with other nurses, talking with doctors, and (...) requesting a team meeting. The multiple regression analysis indicates that newborn intensive care unit nurses with greater concern for the ethical aspects of clinical practice (p =.001) and an increased perception of their ability to influence ethical decision making (p =.018) were more likely to display Nurse Activism. Future research is necessary to identify other factors leading to and inhibiting Nurse Activism as these findings explained just 8.5% of the variance. (shrink)

There is a broadly held view that neonatologists are ethically obligated to act to override parental nontreatment decisions for imperiled premature newborns when there is a reasonable chance of a good outcome. It is argued here that three types of uncertainty undercut any such general obligation: (1) the vagueness of the boundary at which an infant’s deficits become so intolerable that death could be reasonably preferred; (2) the uncertainty about whether aggressive treatment will result in the survival of a reasonably (...) healthy child or, alternatively, the survival of a child with intolerable deficits; and (3) the inability to determine an acceptable ratio between the likelihoods of those two outcomes. It is argued that the broadly held view accords insufficient weight to the fact that newborn intensive care increases the likelihood of harm to the child by effecting survival with intolerable deficits. Though treatment may offer a reasonable chance of a good outcome, it is argued that there are situations in which neonatologists should nonetheless defer to parental nontreatment decisions. (shrink)

When intensive care for newborns was introduced thirty years ago its primary goal was to improve the rates of survival of sick and premature infants. Medicine has been successful in attaining this goal; however, as more infants survive, the cost of intensive care and the additional cost of services and care for handicapped survivors continue to escalate. In order to curb the increasing cost of newborn intensive care, heightened initiatives directed at the (...) prevention of premature births will be necessary. (shrink)

Are there some newborn infants whose short- and long-term care costs are so great that treatment should not be provided and they should be allowed to die? Public discourse and academic debate about the ethics of newborn intensive care has often shied away from this question. There has been enough ink spilt over whether or when for the infant's sake it might be better not to provide life-saving treatment. The further question of not saving infants (...) because of inadequate resources has seemed too difficult, too controversial, or perhaps too outrageous to even consider. However, Roman Catholic ethicist Charles Camosy has recently challenged this, arguing that costs should be a primary consideration in decision-making in neonatal intensive care. In the first part of this paper I will outline and critique Camosy's central argument, which he calls the ‘social quality of life (sQOL)’ model. Although there are some conceptual problems with the way the argument is presented, even those who do not share Camosy's Catholic background have good reason to accept his key point that resources should be considered in intensive care treatment decisions for all patients. In the second part of the paper, I explore the ways in which we might identify which infants are too expensive to treat. I argue that both traditional personal ‘quality of life’ and Camosy's ‘sQOL’ should factor into these decisions, and I outline two practical proposals. (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)

Background: Neonatal nurses report a great deal of ethical challenges in their everyday work. Seemingly trivial everyday choices nurses make are no more value-neutral than life-and-death choices. Everyday ethical challenges should also be recognized as ethical dilemmas in clinical practice. Research objective: The purpose of this study is to investigate which types of ethical challenges neonatal nurses experience in their day-to-day care for critically ill newborns. Research design: Data were collected through semi-structured qualitative in-depth interviews. Phenomenological-hermeneutic analysis was applied (...) to interpret the data. Participants and research context: Six nurses from neonatal intensive care units at two Norwegian hospitals were interviewed on-site. Ethical considerations: The study is designed to comply with Ethical Guidelines for Nursing Research in the Nordic Countries and the Helsinki declaration. Findings: Findings suggest that nurses experience a diverse range of everyday ethical challenges related to challenging interactions with parents and colleagues, emotional strain, protecting the vulnerable infant, finding the balance between sensitivity and authority, ensuring continuity of treatment, and miscommunication and professional disagreement. Discussion: A major finding in this study is how different agents involved in caring for the newborn experience their realities differently. When these realities collide, ethical challenges arise. Findings suggest that acting in the best interests of the child becomes more difficult in situations involving many agents with different perceptions of reality. Conclusion: The study presents new aspects which increases knowledge and understanding of the reality of nursing in a neonatal intensive care unit, while also demanding increased research in this field of care. (shrink)

Background: Neonatal nurses report a great deal of ethical challenges in their everyday work. Seemingly trivial everyday choices nurses make are no more value-neutral than life-and-death choices. Everyday ethical challenges should also be recognized as ethical dilemmas in clinical practice. Research objective: The purpose of this study is to investigate which types of ethical challenges neonatal nurses experience in their day-to-day care for critically ill newborns. Research design: Data were collected through semi-structured qualitative in-depth interviews. Phenomenological-hermeneutic analysis was applied (...) to interpret the data. Participants and research context: Six nurses from neonatal intensive care units at two Norwegian hospitals were interviewed on-site. Ethical considerations: The study is designed to comply with Ethical Guidelines for Nursing Research in the Nordic Countries and the Helsinki declaration. Findings: Findings suggest that nurses experience a diverse range of everyday ethical challenges related to challenging interactions with parents and colleagues, emotional strain, protecting the vulnerable infant, finding the balance between sensitivity and authority, ensuring continuity of treatment, and miscommunication and professional disagreement. Discussion: A major finding in this study is how different agents involved in caring for the newborn experience their realities differently. When these realities collide, ethical challenges arise. Findings suggest that acting in the best interests of the child becomes more difficult in situations involving many agents with different perceptions of reality. Conclusion: The study presents new aspects which increases knowledge and understanding of the reality of nursing in a neonatal intensive care unit, while also demanding increased research in this field of care. (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)

Inequitable access to health care, social inequities, and racist and discriminatory care has resulted in the trend toward poorer health outcomes for Indigenous infants and their families when compared to non‐Indigenous families in Canada. How Indigenous mothers experience care during an admission of their infant to the Neonatal Intensive Care Unit has implications for future health‐seeking behaviors which may influence infant health outcomes. Nurses are well positioned to promote positive health care interactions and improve (...) health outcomes by effectively meeting the needs of Indigenous families. This qualitative study was guided by interpretive description and the Two‐Eyed Seeing framework and aimed to understand how Indigenous mothers experience accessing and using the health care system for their infants. Data were collected by way of interviews and a discussion group with self‐identifying Indigenous mothers of infants less than two years of age living in Hamilton, Ontario, Canada. Data underwent thematic analysis, identifying nursing strategies to support positive health care interactions and promote the health and wellness of Indigenous infants and their families. Building relationships, providing holistic care, and taking a trauma‐informed approach to the involvement of child protection services are three key strategies that nurses can use to positively impact health care experiences for Indigenous families. (shrink)

The ongoing Coronavirus disease 2019 (COVID-19) pandemic is disrupting most specialized healthcare services worldwide, including those for high-risk newborns and their families. Due to the risk of contagion, critically ill infants, relatives and professionals attending neonatal intensive care units (NICUs) are undergoing a profound remodeling of the organization and quality of care. In particular, mitigation strategies adopted to combat the COVID-19 pandemic may hinder the implementation of family-centered care within the NICU. This may put newborns at (...) risk for several adverse effects, e.g., less weight gain, more nosocomial infections, increased length of NICU stay as well as long-term worse cognitive, emotional, and social development. This article aims to contribute to deepening the knowledge on the psychological impact of COVID-19 on parents and NICU staff members based on empirical data from the literature. We also provided evidence-based indications on how to safely empower families and support NICU staff facing such a threatening emergency, while preserving the crucial role of family-centered developmental care practices. (shrink)

Within the mother’s womb, life finds its first stirrings. The womb shelters the fetus, the growing child within. We recognize the existential traces of a wombed existence when a newborn calms in response to being held; when a newborn stills in response to his or her mother’s heartbeat; and, when a newborn startles in the presence of bright light. Yet, how does experiential human life begin within another human being? What are the conditions and paths of becoming (...) for the fetus within the womb? And for the child born early, what “womb” welcomes the premature child in neonatal intensive care? (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)

Withdrawing Artificial Nutrition and Hydration in the neonatal intensive care units has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders’ experience is, and whether they consider it ethically appropriate. In order to contribute to the debate, we initiated a study in 2009 to evaluate parental and health care professionals perspectives, after they experienced WAHN for a newborn. The study included (...) 25 cases from 5 different clinical neonatology departments. We interviewed both the parents and some of the HCP who cared for the baby, at least 6 months after this latter deceased. We proceeded through in-depth individual qualitative interviews. Content was analyzed for themes and patterns that emerged from the data. Some parents expressed that WANH offered an opportunity to the family to spend a few demedicalized days with the baby before she dies, without any tubes and machines, and to be well supported by the HCP during this palliative stage. But others evaluated the practice in retrospect as a terrible ordeal. All said that, at least, the time of waiting for death to ensue should not last too long. After a few days, it becomes unbearable because of the transformation of the baby’s appearance and because they, as parents, began to wonder if she was not dying from starvation rather than from her initial disease. An important proportion of HCP also expressed some kind of ethical unease. This was due to the psychological violence involved in the decision for a human being to stop feeding a little one, and also to the difficulty to deal with the fundamental intention behind the decision of WANH: indeed, could it be claim that it does not presuppose the intention of provoking the infant’s death? The discussion focuses on the point to know if WANH can be considered as a source of progress from an ethical point of view, particularly in comparison with earlier practices—that in France could involve active euthanasia by lethal injection. We argue that when HCP are merely focused on avoiding that WAHN could be construed as a way of intending to hasten the baby’s death, the practice is at risk to be implemented in a way that becomes ethically counterproductive. Focusing on this intention easily distract the clinical teams from what should be their ultimate concern, namely the baby’s comfort during the dying process, as well as the support owned to her parents. To conclude, we suggest that the ethical priorities, when WANH is decided, should be the support due to the patient and her family on the one hand, and, on the other hand to implement it in such a way that at least the baby seems to have died of her initial disease and never of starvation. This means that HCP have a duty to control the timing of death, even though this might be incompatible with the worry to avoid the intention of hastening the baby’s death. (shrink)

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)

The increase of high-risk newborns due to societal changes has presented neonatal intensive care unit nurses with more ethical challenges and heightened their perception of neonatal palliative care. Therefore, this study was a descriptive survey exploring the perceptions of neonatal intensive care unit nurse regarding biomedical ethics and neonatal palliative care in neonatal intensive care units. The research participants were 97 neonatal intensive care unit nurses who had been directly involved (...) with end-of-life care for high-risk babies. Data were collected from November to December 2021 through an online survey. The Korean version of Neonatal Palliative Care Attitude Scale and the tool of biomedical ethics were used. The collected data were analyzed using the T-test, ANOVA, Scheffé test, Pearson correlation coefficient, and multiple regression analysis. The mean score for perception of biomedical ethics in neonatal intensive care unit nurses was 2.89 of 4, and that of neonatal palliative care in neonatal intensive care unit nurses was 3.10 of 5. Existence of a protocol of neonatal palliative care, the experience of patients dying, and the right to life of neonates were factors influencing the perception of neonatal palliative care. The explanatory power was 12.5%. The data support the importance of guidelines regarding systematic neonatal palliative care. Also, developing programs for sharing and supporting experiences of patients dying among colleagues and persistent education about the right to life of neonates for neonatal intensive care unit nurses can improve perception of neonatal palliative care. (shrink)

The aim of this study was to explore the obligations of nurses and physicians in providing end-of-life care. Nineteen nurses and 11 physicians from a single newborn intensive care unit participated. Using content analysis, an overarching obligation of creating the best possible experience for infants and parents was identified, within which two categories of obligations (decision making and the end of life itself) emerged. Obligations in decision making included talking to parents and timing withdrawal. End-of-life obligations (...) included providing options, preparing parents, being with, advocating, creating peace and normalcy, and providing comfort. Nurses and physicians perceived obligations in both categories, although nurse obligations centered on the end of life while physician obligations focused on decision making. The findings demonstrate that, although the ultimate goal is shared by both disciplines, the paths to achieving that goal are often different. This has important implications for collaboration, communication, and improving the end of life. (shrink)

Caring for critically ill and dying patients often triggers both professional and personal growth for physician trainees. In pediatrics, the neonatal intensive care unit is among the most distressing settings for trainees. We used longitudinal narrative writing to gain insight into how physician trainees are challenged by and make sense of repetitive, ongoing conflicts experienced as part of caring for very sick and dying babies. The study took place in a 45-bed, university-based NICU in an urban setting in (...) the United States. From November 2009 to June 2010 we enrolled pediatric residents and neonatology fellows at the beginning of their NICU rotations. Participants were asked to engage in individual, longitudinal narrative writing about their “experience in the NICU.” Thematic narrative analysis was performed. Thirty-seven physician trainees participated in the study. The mean number of narratives per trainee was 12; a total of 441 narratives were available for analysis. Conflict was the most pervasive theme in the narratives. Trainees experienced conflicts with families and conflicts with other clinicians. Trainees also described multiple conflicts of identity as members of the neonatology team, as members of the medical profession, as members of their own families, and as members of society. Physician trainees experience significant conflict and distress while learning to care for critically ill and dying infants. These conflicts often led them to question their own morals and their role in the medical profession. Physician trainees should be educated to expect various types of distress during intensive care rotations, encouraged to identify their own sources of distress, and supported in mitigating their effects. (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)

The diffusion of medical technology is largely determined by the marketplace demands supported by national and historical contexts. Using the cases of cesarean delivery and newborn intensive care in the United States, this article presents the argument that the interaction of four factors accounts for the rapid diffusion of untested technologies. These factors are economic expansion in an unrestricted market, the vulnerability of the patient population, a social disposition towards emergency medicine, and the vested interest of medical (...) specialists. (shrink)

This article explores the bureaucratic, legal and economic dimensions of the neonatal care. Drawing analytically on the neo-Weberian approach in the sociology of professions [Freidson 2001] and the anthropology of bureaucracy in medicine [Berg 1996; Berg & Bowker 1997], we propose to analyse the medical documents and the practices of its composition as both a constitutive element of medical practice and as organisational infrastructure that ensures the coordination of different professional groups and their interactions with patients. Specifically, we define (...) this part of the work of doctors, nursing staff and health care managers in the context of neonatal resuscitation care as a process of creating and modifying a 'paper body' for their patients, i.e. all the document flow that accompanies the processes of treating and routing the patient. Empirically, the study relies on qualitative data collected within ‘the Birth of the Patient’ project: diaries of included observations of a neonatal intensive care physician, ethnographic observations by social researchers, focus groups with neonatal intensive care unit staff and interviews with medical professionals and healthcare managers. As a result of this data analysis, we find that the documentary history of the newborn patient is shaped by multiple negotiations between different medical professionals and representatives of different health care institutions. In some cases, the patient's 'paper body' turns out to be a major determinant of his or her future trajectory of (de)hospitalisation. We also find that the formation of such a documentary biography of a newborn patient does not directly correlate with his or her clinical condition, but reflects the complex system of distribution of material and non-material resources that constitute the newborn care service and in some cases goes beyond it. (shrink)

If a disabled newborn infant dies, her parents may be able to conceive another child without impairment. This is sometimes referred to as 'replacement'. Some philosophers have argued that replacement provides a strong reason for disabled newborns to be killed or allowed to die. In this paper I focus on the case for replacement as it relates to decisions about life support in newborn intensive care. I argue (following Jeff McMahan) that the impersonal reason to replace (...) is weak and easily outweighed. I assess and reject several possible ways in which the impersonal reason to replace could be defended. I then address an alternative justification for replacement - as an individual-affecting benefit. The strongest justification for replacement may be the interests of parents. In the latter part of the paper I look at a related question. What role should replacement play in decisions about the funding of newborn intensive care? (shrink)

Neonatal intensive care nurses are often involved in research protocols as investigators, research assistants or staff nurses implementing the protocol and providing support and explanations to families. It is important, therefore, that nurses have information about parents’ understanding of and attitudes towards the research process. The purpose of this study was to begin an exploration of parents’ perceptions about research with newborn babies through the development and validation of a survey instrument. The questionnaire included: demographic questions; scaled (...) items about research with newborn babies; scenarios describing research studies that varied in degree of risk and benefit to the newborn baby; questions about parents’ willingness to enrol their newborn baby in the studies described; and questions regarding circumstances under which consent should be sought. Content and face validity were established by an expert panel and a pilot test conducted with a small group of health care professionals and lay persons. A convenience sample of 231 parents of newborn babies completed the final version of the questionnaire. Factor analysis revealed seven factors corresponding to issues identified in the literature, providing evidence of construct validity. Parents appeared to have no difficulty in completing the instrument and all questions were answered by the majority of participants. It was concluded that the questionnaire had adequate psychometric properties and that a mixed method approach can be fruitful in exploring sensitive issues. (shrink)

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

A significant portion of newborns cared for in the neonatal intensive care unit or other ICUs, such as the cardiac ICU, have a medical condition with a genetic component, including congenital malformations, the leading cause of death in the NICU. In many cases, however, it is not clear which condition the child has or what can be done to help him or her. Genomic sequencing of sick newborns has the potential to bypass the prolonged journey to a diagnosis, (...) improving the medical care of individual infants. Sequencing also has the potential to benefit others beyond the child whose genome is sequenced and his or her immediate family. Sequence data from sick newborns will expand medicine's understanding of genetic diseases, leading to improvements in clinicians’ ability to counsel family and to provide even more targeted care. Not only will more frequent use of sequencing lead to discovery of new genes; it will also provide unique insights into the full spectrum of known Mendelian genetic diseases, so‐called phenotypic expansion, when a gene previously recognized as associated with a phenotype is found to be associated with an expanded set of clinical features. Genetic and environmental changes that modify the expression of a genetic disease may also be elucidated. (shrink)

In the twenty-first century, decisions to withhold or withdraw life-supporting measures commonly precede death in the neonatal intensive care unit without major ethical controversy. However, caregivers often feel much greater turmoil with regard to stopping medical hydration and nutrition than they do when considering discontinuation of mechanical ventilation or circulatory support. Nevertheless, forgoing medical fluids and food represents a morally acceptable option as part of a carefully developed palliative care plan considering the infant’s prognosis and the burdens (...) of continued treatment. Decisions to stop any form of life support should focus on the clinical circumstances, not the means used to sustain life. (shrink)

Ethical dilemmas are common in the neonatal intensive care setting. The aim of the present study was to investigate the opinions of Swedish physicians and the general public on treatment decisions regarding a newborn with severe brain damage. We used a vignette-based questionnaire which was sent to a random sample of physicians (n = 628) and the general population (n = 585). Respondents were asked to provide answers as to whether it is acceptable to discontinue ventilator treatment, (...) and when it actually is discontinued whether or not it was acceptable to use drugs which hasten death unintentionally or intentionally. The response rate was 67 % of physicians and 46 % of the general population. A majority of both physicians [56 % (CI 50–62)] and the general population [53 % (CI 49–58)] supported arguments for withdrawing ventilator treatment. A large majority in both groups supported arguments for alleviating the patient’s symptoms even if the treatment hastened death, but the two groups display significantly different views on whether or not to provide drugs with the additional intention of hastening death, although the difference disappeared when we compared subgroups of those who were for or against euthanasia-like actions. The study indicated that physicians and the general population have similar opinions regarding discontinuing life-sustaining treatment and providing effective drugs which might unintentionally hasten death but seem to have different views on intentions. The results might be helpful to physicians wanting to examine their own intentions when providing adequate treatment at the end of life. (shrink)

Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient’s life expectancy with treatment. It may affect whether treatment is in a patient’s best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether (...) or when it is justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions. (shrink)

When there is a conflict between parents and the physician over appropriate care due to an infant whose decision prevails? What standard, if any, should guide such decisions?This article traces the varying standards articulated over the past three decades from the proposal in Duff and Campbell’s 1973 essay that these decisions are best left to the parents to the Baby Doe Regs of the 1980s which required every life that could be salvaged be continued. We conclude with support for (...) the policy articulated in the 2007 guidelines of the American Academy of Pediatrics on non-intervention or withdrawal of intensive care for high-risk newborns. (shrink)

In a recent publication, I argued that there is a conceptual difference between artificial womb (AW) technology, capable of facilitating gestation ex utero, and neonatal intensive care, providing incubation to neonates born prematurely. One of the reasons I provided for this distinction was that the subjects of each process are different entities. The subject of the process of gestation ex utero is a unique human entity: a ‘gestateling’, rather than a fetus or a newborn preterm neonate. Nick (...) Colgrove wrote a response to my paper, claiming that my distinction between the subject of an AW and a newborn (in intensive care) was false. He claims that I have not accounted for the proper definition of ‘birth’ and that gestatelings are not a distinct product of human reproduction. Further, Colgrove posits that even if I can successfully distinguish gestatelings from preterms, such a distinction is morally irrelevant because the entities would have the same moral status. In this paper, I address the three challenges raised and defend the claim that gestatelings are unique entities. Moreover, I argue that moral status should not be considered ipso facto determinative in the debate about AWs. (shrink)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. (...) I present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

When the delivery of a baby at the edge of viability is imminent, gestational age is usually the primary indi­cator for resuscitation. However, four other variables—female sex, antenatal corticosteroid therapy, singleton birth, and increased birth weight—are also associated with better infant survival and neurologic outcome in intensive care, and the combination of all five variables provides a stronger prognostic tool. An ethical framework is provided here for use in determining whether proposed treatments are likely to defend the dignity (...) and sanctity of a fragile periviable life. The framework is based on the principle of ordinary/propor­tionate and extraordinary/disproportionate medical treatment. The author recommends using the most recent outcome data and this ethical framework together to make perinatal resuscitation decisions. Use of gestational age alone is insufficient and ethically immoral. National Catholic Bioethics Quarterly 14.3 : 429–439. (shrink)

Background: Currently preterm births are the leading causes of newborn deaths and newborn mortality in developed countries. Infants born prematurely remain vulnerable to many acute complications and long-term disabilities. There is a growing concern surrounding the moral and ethical implications of the complex and technological care being provided to extremely low birth weight infants in neonatal intensive care units in the developed nations. Research purpose: The purpose of this study was to describe the ethical and (...) moral issues that neonatal intensive care nurses experience when caring for low birth weight preterm infants and their families. Research design: A phenomenological method design was used to describe the lived experiences of nurses with ethical and moral issues encountered in the neonatal intensive care unit. One-on-one, semi-structured interviews using open-ended questions were used to gather data from the participants. Research participants: The setting for this study was a 97-bed neonatal intensive care. A total of 16 female nurses were interviewed. Ethical considerations: Approval to conduct the research study was obtained from the institutional review board of the hospital where the study was conducted. Formal signed consent was obtained from each participant. To ensure confidentiality, each participant was asked to choose a confederate name to be used in the interview and the transcriptions. Findings: The thematic analysis identified five recurring themes: (a) at the edge of viability, (b) infant pain and discomfort, (c) crucial decisions, (d) communicating with parents, and (e) letting go. Conclusion: Neonatal intensive care unit nurses indicated that they often had challenges to their own sense of morality as they struggled to protect the infant from pain and unnecessary discomfort, provide care to an infant and their family whom they thought was faced with a lifetime of challenges and poor health, accepting decisions made by parents, and feeling as if parents were not adequately informed about outcomes. (shrink)

Over the past several decades in which access to abortion has become increasingly restricted, parents' autonomy in medical decision‐making in the realms of fetal care and neonatal intensive care has expanded. Today, parents can decide against invasive medical interventions at gestational ages where abortions are forbidden, even in cases where neonates are expected to be seriously ill. Although a declared state interest in protecting the lives of fetuses and newborns contributes to justifications for restricting women's autonomy with (...) regards to abortion, it does not fully explain this discrepancy. We believe that social portrayals of women as complying with or shirking their reproductive function play a major role in explaining it. The growing divide between a woman's rights as a reproductive being and as a parent suggest that abortion restriction is rooted in a historical societal desire for women to serve as reproducers and in the corresponding fear of them abandoning this allotted role in pursuit of social equality. The Dobbs v. Jackson (2022) decision is not based in a view of abortion as a medical act occurring between a doctor and patient, as Roe v. Wade (1973) did, but decision‐making about fetal therapy or NICU care is still viewed as occurring between a doctor and patient or surrogate because in this act a woman is seen as fulfilling her role as mother. (shrink)

During the last two decades there has been an enormous development in treatment possibilities in the field of neonatology, particularly for (extremely) premature infants. Although there are cross-cultural differences in treatment strategy, an overview of the literature suggests that every country is confronted with moral dilemmas in this area. These concern decisions to initiate or withhold treatment directly at birth and, later on, decisions to withdraw treatment with the possible consequence that the child will die. Given that the neonate cannot (...) express his or her own will, who will decide? And on the basis of what information, values and norms? We explored some of these issues in daily practice by interviewing a small sample of health care practitioners in a Dutch university Neonatal Intensive Care Unit (NICU). It turned out that experiencing moral dilemmas is part of their daily functioning. Nurses underline the suffering of the newborn, whereas physicians stress uncertainty in treatment outcome. To make the best of it, nurses focus on their caring task, whereas physicians hope that future follow-up research will lead to more predictable outcomes. As for their own offspring, part of these professionals would hesitate to bring their own extremely premature newborn to a NICU. For the most oppressing dilemma reported – terminating an already initiated treatment – we propose the concept of ‘evidence shift’ to clarify the ambiguous position of uncertainty in decision making. (shrink)

During the last two decades there has been an enormous development in treatment possibilities in the field of neonatology, particularly for (extremely) premature infants. Although there are cross-cultural differences in treatment strategy, an overview of the literature suggests that every country is confronted with moral dilemmas in this area. These concern decisions to initiate or withhold treatment directly at birth and, later on, decisions to withdraw treatment with the possible consequence that the child will die. Given that the neonate cannot (...) express his or her own will, who will decide? And on the basis of what information, values and norms? We explored some of these issues in daily practice by interviewing a small sample of health care practitioners in a Dutch university Neonatal Intensive Care Unit (NICU). It turned out that experiencing moral dilemmas is part of their daily functioning. Nurses underline the suffering of the newborn, whereas physicians stress uncertainty in treatment outcome. To make the best of it, nurses focus on their caring task, whereas physicians hope that future follow-up research will lead to more predictable outcomes. As for their own offspring, part of these professionals would hesitate to bring their own extremely premature newborn to a NICU. For the most oppressing dilemma reported – terminating an already initiated treatment – we propose the concept of ‘evidence shift’ to clarify the ambiguous position of uncertainty in decision making. (shrink)

Children like Baby G, born with complex chronic medical conditions that compromise function in the long term, are an increasing presence in tertiary-level neonatal intensive care units. The parents and health-care providers of these children are faced with profoundly difficult decisions. Whether severe congenital anomalies with poor prognosis are diagnosed antenatally or are discovered at the time of birth, the issues are vexing, and the impact decisions will have on everyone in the family is profound. What should (...) such decisions be based upon? What values and principles might guide the decision-making process? What moral justifications allow for pursuing.. (shrink)

The standard approach to parental refusal of transfusion on religious grounds in many newborn intensive care units and paediatric services is to override the refusal and provide the transfusion, usually with court intervention if time allows. This approach is justified by the child's right to effective treatment, seen to outweigh the parents' right to religious freedom and their right to decide for their child. That justification, however, may be limited by the predicted effectiveness of the transfusion (or (...) any proposed treatment) in preventing significant harm to the child. A case where parental refusal was appropriately respected is briefly discussed. (shrink)

Since the publication of the successful animal trials of the Biobag, a prototypical extrauterine support for extremely premature neonates, numerous ethicists have debated the potential implications of such a device. Some have argued that the Biobag represents a natural evolution of traditional newborn intensive care, while others believe that the Biobag would create a new class of being for the patients housed within. Kingma and Finn argued inBioethicsfor making a categorical distinction between fetuses, newborns and ‘gestatelings’ in (...) a Biobag on the basis of a conceptual distinction between ectogenesis versus ectogestation. Applying their arguments to the clinical realities of newborn intensive care, however, demonstrates the inapplicability of their ideas to the practice of medicine. Here, I present three clinical examples of the difficulty and confusion their argument would create for clinicians and offer a possible remedy: namely, discarding the term ‘artificial womb’ in favour of ‘Biobag’. (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)

Infants who are born extremely prematurely can survive if they receive intensive medical treatment. However, they also have a high chance of dying, and a proportion of survivors have long-term health problems and disabilities. In many parts of the world, if parents request it, an extremely premature infant can receive palliative care rather than active survival-focused care at birth. But there are variations between countries as to whether or when this is permitted. To help inform ethical debates (...) across Asia and more widely, we present two contrasting views about parental discretion and the treatment of extremely preterm infants. In questions of this nature, disagreement and dissensus are inevitable. Differences in the outcomes of treatment, the resources available, and the values of society mean that we should not expect a uniform approach. We identify points of potential consensus and compromise despite disagreement. (shrink)

Background Clinical empathy is an essential part of healthcare, and patient-centered care models require clinical empathy to be established. Despite this, little is known about its measurement in the neonatal scenario. Research Aim To measure clinical empathy in health professionals who work with medium and high-risk neonates and build a construct of this empathy. Research Design Single-center survey study. Participants and Research Context The Jefferson Scale of Empathy for Health Professionals questionnaire was applied to health professionals who work in (...) an intensive care unit and a medium-risk unit, in Brazil. Analysis was done using descriptive statistics and a factor analysis model, to build the construct of empathy. Overall empathy was calculated, and the domains’ punctuations were analyzed and compared to the maximum punctuation possible. The study followed the STROBE checklist. Ethical Considerations This study was approved by the Research Ethics Committee of the institution. All participants signed the informed consent form. Participants’ confidentiality and anonymity were protected. Findings Median empathy was 117 (IQR 113–124). The domain of Walking in the Patient’s Shoes had lower scores and represented 77.6% of the maximum punctuation possible. The factor analysis included three factors named Understanding, Experiences, and Treatment, and Emotional Relationships, explaining 64.3% of the overall variance. The domain Walking in the Patient’s Shoes was not included in the model. Conclusions In this scenario, clinical empathy should improve. There is a need to improve the domain of Walking in the Patient’s Shoes, in this case, the neonate, and provide more empathic care to them. (shrink)

Researchers have identified the phenomena of moral distress through many studies in Western countries. This research reports the first study of moral distress in Iran. Because of the differences in cultural values and nursing education, nurses working in intensive care units may experience moral distress differently than reported in previous studies. This research used a qualitative method involving semistructured and in-depth interviews of a purposive sample of 31 (28 clinical nurses and 3 nurse educators) individuals to identify the (...) types of moral distress among clinical nurses and nurse educators working in 12 cities in Iran. A content analysis of the data produced four themes to describe the nurses’ moral distress. The four themes were as follows: (a) institutional barriers and constraints; (b) communication problems; (c) futile actions, malpractice, and medical/care errors; (d) inappropriate responsibilities, resources, and competencies. The results demonstrate that moral distress for intensive care unit nurses is different and that the nursing leaders must reduce moral distress among nursing in intensive care. (shrink)

Genomic sequencing technologies (GS) pose novel challenges not seen in older genetic technologies, making traditional standards for fully informed consent difficult or impossible to meet. This is due to factors including the complexity of the test and the broad range of results it may identify. Meaningful informed consent is even more challenging to secure in contexts involving significant time constraints and emotional distress, such as when rapid genomic testing (RGS) is performed in neonatal intensive care units. In this (...) article, we propose that informed consent matters not for its own sake, but because obtaining it furthers a range of morally important goals, such as promoting autonomy, well‐being, and trust in medicine. These goals form the basis of a new framework [PROmoting Morally Important Consent Ends (PROMICE)] for assessing the ethical appropriateness of various informed consent models. We illustrate this framework with two examples: (a) a tiered and layered consent model for obtaining consent for GS, and (b) consent for RGS in critically ill newborns. We conclude that appropriately—rather than fully—informed consent provides the correct standard for genomic medicine and research. (shrink)

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

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Too Expensive to Treat? Finitude, Tragedy, and the Neonatal ICU by Charles C. CamosyAutumn Alcott RidenourReview of Too Expensive to Treat? Finitude, Tragedy, and the Neonatal ICU CHARLES C. CAMOSY Grand Rapids, MI: Eerdmans, 2010. 208 pp. $18.00In Too Expensive to Treat? Charles Camosy makes an important contribution to bioethics and Christian ethics by making the case for the need to consider social factors when treating imperiled newborns. (...) Arguing for both the full moral status of newborns and Roman Catholic social teaching’s emphasis on the just allocation of resources, Camosy calls the medical community, bioethicists, and [End Page 209] Christian ethicists to account for current practices that disproportionately favor exorbitant costs for imperiled infants over other even more basic medical needs within the US health care system. Written before the adoption of the Affordable Care Act under the Obama administration, Camosy’s argument has only increased in significance given the national need to prioritize resources in view of the government’s expansion of health care coverage.Born within twenty-two to twenty-four weeks of gestation and weighing between 500 and 850 grams, some imperiled infants absorb hundreds of thousands of dollars in short-term care that may extend into millions of dollars given long-term costs (146, 171–93). Recognizing the tragic reality in which “we have virtually unlimited health care needs” coupled with “limited health care resources,” Camosy contends that current Medicaid funds that privilege the NICU (neonatal intensive care unit) should be reevaluated (1–3). In an effort to temper the “autonomous,” patient-driven principle with “justice,” Camosy poses a challenging philosophical, theological, and practical proposal for what he identifies as the “gray area” of the NICU.Maintaining a twofold commitment to human dignity that values the moral worth of the infant, on the one hand, and the common good that privileges a preferential option for the poor, on the other, Camosy develops his argument in four major steps. First, he validates the moral status of newborn infants and rejects social quality of life models that dismiss their intrinsic status as “persons.” Second, he dismisses arguments that emphasize personal dignity at the expense of considering the social quality of life, pointing out that such arguments disregard Catholic social teaching’s emphasis on the link between relational anthropology and human personhood (100). Third, he contends that “weak” social quality of life models that privilege the patient or individual over social considerations do not take seriously either Catholic social teaching’s emphasis on the common good or the potentially overwhelming economic and practical burdens they might place on families and society as a whole. Finally, Camosy presents a constructive proposal for limiting NICU resources that seeks to counter a culture of overtreatment that idolizes technology and is at the mercy of an unrestrained free market (162). Emphasizing the need for a just allocation of resources, he supports withholding and withdrawing life-sustaining treatment in some cases, thus foreseeing the possible death of some infants. Although he does not accept the direct killing of these infants, he does maintain that Catholic social teaching would allow for the withdrawal of life-sustaining treatment based on certain criteria.Camosy raises a host of important considerations relevant to decisions about imperiled infants. Yet a few questions remain. First, from a Christian point of view, does he not fall into a kind of soft utilitarianism, even though he himself desires to avoid the pitfalls of utilitarianism? Second, how might Camosy envision Christian practices that care for “exposed” infants left without life-sustaining treatment? Finally, what about the difficult emotions that accompany [End Page 210] the death of an infant or child? Do certain kinds of grief complicate our rationing choices that appear to pit the old against the young? While perhaps unanswerable, these questions merit further discussion.Autumn Alcott RidenourMerrimack CollegeCopyright © 2015 Society of Christian Ethics... (shrink)