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.

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

Jones, Kate This article is especially concerned with aspects of neonatal care where considerable uncertainty in prognosis preceding death creates unique ethical dilemmas. Emphasis is initially given to the dynamics of uncertainty, and the need for medical care to be administered with compassion, and follows with the idea that ethical principles can guide difficult decisions by forming a symbolic navigational compass.

(2011). Life and Death Choices in Neonatal Care: Applying Shared Decision-Making Focused on Parental Values. The American Journal of Bioethics: Vol. 11, No. 2, pp. 35-36.

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

The moral arguments and the decision-making processes arising from them in the context of the dilemmas that arise in considering the appropriateness and implementation of withholding or withdrawing treatment in certain neonates form the basis of this commentary. It is concluded that the differing opinions on management of these babies by individual paediatricians results from their differing moral outlooks rather than from any incoherence in the moral arguments set out in the Dutch report.

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 Dutch Paediatric Association reports consensus among its members regarding the necessity to take the future quality of life into account when reaching decisions regarding the continuation or dis-continuation of life-prolonging treatment. The paramount importance of the discussion with the parents is stressed. Dissension exists regarding active euthanasia in the newborn, both opinions being respected. If dissension exists within the profession parents should be informed and if necessary referred to a doctor who shares their moral views.

Issues of life and death such as abortion, assisted suicide, capital punishment, and others are among the most contentious in many societies. Whose rights are protected? How do these rights and protections change over time and who makes those decisions? Based on the author's award-winning and hugely popular undergraduate course at The University of Texas, this book explores these questions and the fundamentally sociological processes that underlie the quest for morality and justice in human societies. The author's goal is not (...) to advocate any particular moral "high ground," but to shed light on the social movements and social processes that are at the root of these seemingly personal moral questions"--Provided by publisher. (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)

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)

This study explores the factors associated with neonatal mortality and maternal health care in Nepal. The subjects were 4375 births reported in the 1996 Nepal Family Health Survey. Maternal and child health care was found to have a significant association with neonatal mortality, although preceding birth interval and sex of child had stronger effects. Four aspects of maternal care were found to be highly associated with region, household ownership of assets, mothers education. This indicates that (...) accessibility, affordability and availability of maternal health care are important factors to consider in future research on neonatal mortality. (shrink)

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

The 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)

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)

Transfers of critically ill neonates are frequent phenomena. Even though parents’ participation is regarded as crucial in neonatal care, a transfer often means that parents and neonates are separated. A systematic review of the parents’ experiences of neonatal transfer is lacking. This paper describes a meta‐study addressing qualitative research about parents’ experiences of neonatal transfer. Through deconstruction and reflections of theories, methods, and empirical data, the aim was to achieve a deeper understanding of theoretical, empirical, contextual, (...) historical, and methodological issues of qualitative studies concerning parents’ experiences of neonatal transfer over the course of this meta‐study (2000–2017). Meta‐theory and meta‐method analyses showed that caring, transition, and family‐centered care were main theoretical frames applied and that interviewing with a small number of participants was the preferred data collection method. The meta‐data‐analysis showed that transfer was a scary, unfamiliar, and threatening experience for the parents; they were losing familiar context, were separated from their neonate, and could feel their parenthood disrupted. We identified ‘wavering and wandering’ as a metaphoric representation of the parents’ experiences. The findings add knowledge about meta‐study as an approach for comprehensive qualitative research and point at the value of meta‐theory and meta‐method analyses. (shrink)

The aim of this study was to explore neonatal nurses’and mothers of preterm infants’experiences of daily challenges. Interviews took place asking for good, bad and challenging experiences. Data were analysed using qualitative content analysis and findings were clustered in two categories: good and challenging experiences, each containing three themes. The good experiences were: managing with success as a nurse, small things matter for mothers, and a good day anyhow for mothers and nurses. The challenging experiences were: mothering in public, (...) being pulled between responsibilities, and adverse things stick under the nurses’skin. The study shows that small daily clinical matters become big issues and could lead to moral distress, and that nurses integrate ethics of justice and ethics of care while mothers are concerned about health and well-being of their specific infant only. The challenge for nursing to integrate fairness and sensitive care in family-oriented neonatal care is discussed. (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)

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)

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)

Two factors are discussed which have important implications for the issue of paternalism in the neonatal intensive care unit (NICU): the physician's role as advocate for the patient; and the range of typical responses of parents who learn that their neonate has a serious illness. These factors are pertinent to the task of identifying those actions which are paternalistic, as well as to the question of whether paternalism is justified. It is argued that certain behavior by physicians which (...) is often thought to be paternalistic is not in fact so. Furthermore, an argument in defense of paternalism which has largely been overlooked is presented. Examples are given to illustrate how paternalism actually arises in the NICU, and it is argued that paternalism is justified in some cases. (shrink)

This paper examines parents experiences of medical decision-making and coping with having a critically ill baby in the Neonatal Intensive Care Unit (NICU) from a cross-cultural perspective (France vs. U.S.A.). Though parents experiences in the NICU were very similar despite cultural and institutional differences, each system addresses their needs in a different way. Interviews with parents show that French parents expressed overall higher satisfaction with the care of their babies and were better able to cope with the (...) loss of their child than American parents. Central to the French parents perception of autonomy and their sense of satisfaction were the strong doctor–patient relationship, the emphasis on medical certainty in prognosis versus uncertainty in the American context, and the sentimental work" provided by the team. The American setting, characterized by respect for parental autonomy, did not necessarily translate into full parental involvement in decision-making, and it limited the rapport between doctors and parents to the extent of parental isolation. This empirical comparative approach fosters a much-needed critique of philosophical principles by underscoring, from the parents perspective, the lack of emotional work" involved in the practice of autonomy in the American unit compared to the paternalistic European context. Beyond theoretical and ethical arguments, we must reconsider the practice of autonomy in particularly stressful situations by providing more specific means to cope, translating the impersonal language of rights" and decision-making into trusting, caring relationships, and sharing the responsibility for making tragic choices. (shrink)

All forms of beauty create appeal or enticement with moral significance. Sublime beauty draws one into a deep relationship that properly promotes the good and true. Parents tend to experience such beauty in their children, as eloquently described in works such as the 14th-century poem ‘The Pearl’, and they see this even when their children are desperately ill or dying. The experience of beauty in one’s child creates or reinforces the morality of caring. Unfortunately, at the end of modernity, the (...) framing of beauty as only instrumental and subjective generally works against any recognition of dignity or respect for the very small pediatric patient. Practitioners who believe in the intrinsic value and dignity of persons as general concepts should recognize parental drawing toward their children as a particularization of a transcendental value. (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)

Background End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians’ profiles, motivation, values and attitudes underlying such decisions and the correlation with their background are scarce. The aim was to investigate neonatologists' attitudes in Neonatal Intensive Care Units and correlate them with self-reported practices of end-of-life decisions and with their background data. Methods A structured questionnaire was distributed to all 28 Neonatal Intensive Care Units in (...) Greece. One hundred and sixty two out of 260 eligible physicians answered anonymously the questionnaire. Demographic and professional characteristics, self-reported practices and opinions were included in the questionnaire, along with a questionnaire of 12 items measuring physicians’ attitude and views ranging from value of life to quality of life approach. Results Continuation of treatment in neonates with adverse prognosis without adding further therapeutic interventions was the most commonly reported EoL practice, when compared to withdrawal of mechanical ventilation. Physicians with a high attitude score were more likely to limit, while those with a low score were more likely for continuation of intensive care. Physicians’ educational level, involvement in research, religion and position on the existing legal framework were factors that affected the attitude score. Conclusions Physicians presented with varying end-of-life practices. Limiting interventions in neonates with poor prognosis was strongly related to their attitudes. The most important predictors for physicians' attitudes were religiousness and belief for Greek legal system reform. (shrink)

Medical teams care for severely premature infants under conditions of emergency and uncertainty that make parental involvement very difficult. Parents can be invited into a decisional relationship with the team that enables them to assess more fully the meaning of their child's illness.

Background: Limited knowledge of the experiences of conflicts of conscience found in nursing literature. Objectives: To explore the individual experiences of a conflict of conscience for neonatal nurses in Alberta. Research design: Interpretive description was selected to help situate the findings in a meaningful clinical context. Participants and research context: Five interviews with neonatal nurses working in Neonatal Intensive Care Units throughout Alberta. Ethical consideration: Ethics approval from the Health Research Ethics Board at the University of (...) Alberta. Findings: Three common themes emerged from the interviews: the unforgettable conflict with pain and suffering, finding the nurse’s voice, and the unique proximity of nurses. Discussion and conclusion: The nurses described a conflict of conscience when the neonate in their care experienced undermanaged pain and unnecessary suffering. During these experiences, they felt guilty, sad, hopeless, and powerless when they were unable to follow their conscience. Informal ways to follow their conscience were employed before declaration of conscientious objection was considered. This study highlights the vital importance of respecting a conflict of conscience to maintain the moral integrity of neonatal nurses and exposes the complexities of conscientious objection. (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)

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

Although the role of imagination in moral reasoning is often neglected, recent literature, mostly of pragmatist signature, points to imagination as one of its central elements. In this article we develop some of their arguments by looking at the moral role of imagination in practice, in particular the practice of neonatal intensive care. Drawing on empirical research, we analyze a decision-making process in various stages: delivery, staff meeting, and reflection afterwards. We show how imagination aids medical practitioners demarcating (...) moral categories, tuning their actions, and exploring long-range consequences of decisions. We argue that imagination helps to bring about at least four kinds of integration in the moral decision-making process: personal integration by creating a moral self-image in moments of reflection; social integration by aiding the conciliation of the diverging perspectives of the people involved; temporal integration by facilitating the parties to transcend the present moment and connect past, present, and future; and epistemological integration by helping to combine the various forms of knowledge and experience needed to make moral decisions. Furthermore, we argue that the role of imagination in these moral decision-processes is limited in several significant ways. Rather than being a solution itself, it is merely an aid and cannot replace the decision itself. Finally, there are also limits to the practical relevance of this theoretical reflection. In the end, it is up to care professionals as reflective practitioners to re-imagine the practice of intensive care and make the right decisions with hope and imagination. (shrink)

Background: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses’ attitudes and involvement in end-of-life decisions are available. Research question/aim: To investigate neonatal nurses’ attitudes and involvement in end-of-life decisions and the relation to their socio-demographic and work-related background data. Research design: A survey was carried out in 28 neonatal intensive care units between September 2018 and January 2019. A structured questionnaire was distributed by post. Participants and (...) research context: The questionnaire was answered anonymously by 312 nurses and returned to the investigators. Ethical considerations: The study was approved by the Bioethics and Research Committee of Aretaieio Hospital in accordance with the Helsinki Declaration. Findings: Nurses more often reported involvement in various end-of-life decisions, such as continuation of treatment without adding further therapeutic interventions for terminally ill neonates, while less reported were mechanical ventilation withdrawal and drug administration to end life. Nurses with a high attitude score, reflecting a more quality-of-life approach, were more likely to be involved in setting limits to intensive care. α low score was consistent with life preservation. Nurses’ religiousness, parenthood, involvement in daily practice, and position on the existing legal framework influenced their attitude score. Discussion: The likelihood of nurses to support interventions in neonates with poor prognosis in neonatal intensive care units was related to their attitudes. After adjusting for potential confounders, the most important predictors for nurses’ attitudes were parenthood, involvement in daily practice, and position supporting current legislation reform. Conclusion: Variability in involvement in end-of-life decisions among nurses exists on a national level. (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: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)

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)

Background: The intrauterine hearing experience differs from the extrauterine hearing exposure within a neonatal intensive care unit (NICU) setting. Also, the listening experience of a neonate drastically differs from that of an adult. Several studies have documented that the sound level within a NICU exceeds the recommended threshold by far, possibly related to hearing loss thereafter. The aim of this study was, firstly, to precisely define the dynamics of sounds within an incubator and, secondly, to give clinicians and (...) caregivers an idea about what can be heard “inside the box.” Methods: Audio recordings within an incubator were conducted at the Pediatric Simulation Center of the Medical University Vienna. They contained recorded music, speech and synthesized sounds. To understand the dynamics of sounds around and within the incubator the following stimuli were used: broadband noise with decreasing sound level in ten steps of 6 dB, sine waves (62.5, 125, 250, 500, 1000, 2000, 4000, 8000 and 16000 Hz), logarithmic sweep (Chirp) over the frequency band 20 Hz to 21 kHz, singing male voice, singing and whispering female voice. Results: Our results confirm a protective effect of the incubator from noises above 500 Hz in conditions of “no-flow” and show almost no protective effect of an incubator cover. We, furthermore, observed a strong boost of low frequencies below 125 Hz within the incubator, as well as a notable increase of higher frequency noises with open access doors, a significant resonant effect of the incubator, and a considerable masking effect of the respiratory support against any other source of noise or sound stimulation even for “low-flow” conditions. Conclusion: Our study reveals high noise levels of air supply at high flow rates and the boost of low frequencies within the incubator. Education of medical staff and family members as well as modifications of the physical environment should aim at reducing noise exposure of preterm infants in the incubator. Audiovisual material is provided as supplementary material. (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)

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

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)

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)