Ethical issues in treatment of babies born at 22 weeks of gestation.

Many centres now report that more than half of babies born at 22 weeks survive and most survivors are neurocognitively intact. Still, many centres do not offer life-sustaining treatment to babies born this prematurely. Arguments for not offering active treatment reflect concerns about survival rates, rates of neurodevelopmental impairment and cost. In this essay, I examine each of these arguments and find them ethically problematic. I suggest that current data ought to lead to two changes. First, institutional culture should change at institutions that do not offer treatment to babies born at 22 weeks. Second, we need more research to understand best practices for these tiny babies.

Dignity: The Cornerstone of Nursing Care Among Hospitalized Mothers of Infants in Neonatal Intensive Care Unit.

: One of the most important areas of nursing care delivery is "dignity." Because of the increase in hospitalized infants in neonatal intensive care units in recent years, this has led to an increased focus on "family care and maternal dignity." Given the importance of understanding the phenomenon of maternal dignity in order to improve cooperation in the care of their infants and promote family-centered care, this study aims to describe the lived experience of hospitalized mothers of infants within the context of dignity. This is a descriptive phenomenological qualitative research study. Twenty mothers were invited to participate in this study using purposeful sampling. The data were generated through individual, semistructured interviews and field notes were developed during the interviews. Data were analyzed using the Colaizzi method.Findings of the study were presented in 3 themes: "privacy," "respecting individual identity," and "authority," and 7 additional subthemes. Mothers in this study needed to take care of their infants in an environment where their personal privacy is preserved, their individual identity is respected, and they have sufficient authority in obtaining medical decisions. It is essential that healthcare teams and policy makers of health organizations provide an appropriate supportive environment in terms of promoting mothers' dignity in different dimensions and subsequently improving family-centered care.

Neonatology in Austria: ethics to improve practice.

In the world of Austrian neonatal intensive care units, the role of ethics is recognized only partially. The normatively tense cases that are at the backdrop of this essay concern the situations around the limit of viability (weeks 22 + 0 days to 25 + 6 days of gestation), which is the point in the development of an extremely preterm infant at which there are chances of extra-uterine survival. This essay first outlines the key explicit ethical challenges that are mainly concerned with notions of uncertainty and best interest. Then, it attempts to elucidate the less explicit ethical challenges related to the notion of nudging in the neonatal practice and argue that the role of ethics needs to be recognized more-with the focus on the role of virtue ethics-in order to improve the practice of neonatal medicine.

Deferred consent for delivery room studies: the providers' perspective.

OBJECTIVE: To gain insight into neonatal care providers' perceptions of deferred consent for delivery room (DR) studies in actual scenarios. METHODS: We conducted semistructured interviews with 46 neonatal intensive care unit (NICU) staff members of the Leiden University Medical Center (the Netherlands) and the Hospital of the University of Pennsylvania (USA). At the time interviews were conducted, both NICUs conducted the same DR studies, but differed in their consent approaches. Interviews were audio-recorded, transcribed and analysed using the qualitative data analysis software Atlas.ti V.7.0. RESULTS: Although providers reported to regard the prospective consent approach as the most preferable consent approach, they acknowledged that a deferred consent approach is needed for high-quality DR management. However, providers reported concerns about parental autonomy, approaching parents for consent and ethical review of study protocols that include a deferred consent approach. Providers furthermore differed in perceived appropriateness of a deferred consent approach for the studies that were being conducted at their NICUs. Providers with first-hand experience with deferred consent reported positive experiences that they attributed to appropriate communication and timing of approaching parents for consent. CONCLUSION: Insight into providers' perceptions of deferred consent for DR studies in actual scenarios suggests that a deferred consent approach is considered acceptable, but that actual usage of the approach for DR studies can be improved on.

How Moral Case Deliberation Supports Good Clinical Decision Making.

In clinical decision making, facts are presented and discussed, preferably in the context of both evidence-based medicine and patients' values. Because clinicians' values also have a role in determining the best courses of action, we argue that reflecting on both patients' and professionals' values fosters good clinical decision making, particularly in situations of moral uncertainty. Moral case deliberation, a form of clinical ethics support, can help elucidate stakeholders' values and how they influence interpretation of facts. This article demonstrates how this approach can help clarify values and contribute to good clinical decision making through a case example.

Does It Matter if This Baby Is 22 or 23 Weeks?

A 530-g girl born at 22 weeks and 6 days' gestation (determined by an ultrasound at 11 weeks) was admitted to the NICU. Her mother had received prenatal steroids. At 12 hours of age, she was stable on low ventilator settings. Her blood pressure was fine. Her urine output was good. After counseling, her parents voiced understanding of the risks and wanted all available life-supporting measures. Many nurses were distressed that doctors were trying to save a "22-weeker." In the past, 4 infants born at 22 weeks' gestation had been admitted to that NICU, and all had died. The attending physician on call had to deal with many sick infants and the nurses' moral distress.

Ethical Dilemmas in Neonatology - Four Theoretical Cases and Three Monotheistic Approaches: A Pilot Study.

BACKGROUND: Israel's population is diverse, with people of different religions, many of whom seek spiritual guidance during ethical dilemmas. It is paramount for healthcare providers to be familiar with different religious approaches. OBJECTIVES: To describe the attitudes of the three major monotheistic religions when encountering four complex neonatal situations. METHODS: A questionnaire related to four simulated cases was presented to each participant: a non-viable extremely premature infant (case 1), a severely asphyxiated term infant with extensive brain damage (case 2), a small preterm infant with severe brain hemorrhage and likely extensive brain damage (case 3), and a term infant with trisomy 21 syndrome and a severe cardiac malformation (case 4). RESULTS: Major differences among the three religious opinions were found in the definition of viability and in the approach towards quality of life. CONCLUSIONS: Neonatologists must be sensitive to culture and religion when dealing with major ethical issues in the neonatal intensive care unit.

Nudging in Neonatology: Practical Wisdom and Accountability for Reasonableness.

OBJECTIVES: The way choice is presented has an impact on decision-making. This is the case also in the context of neonatal intensive care units (NICUs), particularly in the challenging cases that concern the limit of viability. The objective of this article is to examine the role of nudging in the shared decision-making in neonatology and elaborate on the respective moral challenges. RESULTS: Nudging is not morally neutral. There are two key sources of ethical issues at the heart of nudging. The first one concerns the lack of transparency, while the second concerns the background value judgments that are imminent whenever nudging is used for achieving a particular end. To solve the underlying conflict, a virtue ethics approach combined with the accountability for reasonableness framework is suggested to guide the use of the tool of nudging. CONCLUSIONS: NICU professionals ought to use the tool of nudging transparently in line with their act of profession and their practically wise judgment.

End-of-life Decisions at Neonatal Intensive Care Units: Jordanian Nurses Attitudes and Viewpoints of Who, When, and How.

PURPOSE: To explore factors predicting neonatal nurses' attitude towards end-of-life decisions in neonates, and to describe the nurses' viewpoints on end-of-life decisions; barriers to end-of-life decision making; parents', nurses', and ethical committees' involvement in the process of end-of-life decision making; and who should regulate end-of-life decisions regarding neonates. DESIGN AND METHODS: A cross-sectional descriptive correlational design was applied. Sample included 279 neonatal nurses working in 24 neonatal intensive care units across Jordan. Data were collected using internationally-accepted questionnaires. Descriptive and inferential statistics were applied in data analysis. RESULTS: Most nurses perceived that everything possible should be done to ensure a neonate's survival, even when they suffer severe prognosis (80%) and irrespective of the burden of the child's disability on the family (75%). Almost all nurses (96%) were against administering drugs with the purpose of ending the neonate's life and 63% were against continuing current treatment without adding others. The nurses' perceived effect of end-of-life decisions on their everyday life, and the importance of religious values to the nurses' personal lives, significantly predicted pro-life attitude scores. According to 80% of the nurses, legal constraints were the most significant barriers to end-of-life decision making. The majority of nurses (84%) indicated that non-religious bodies should establish end-of-life regulations for neonates. CONCLUSION: Generally, nurses' attitude was supportive of life saving decisions at end-of-life, regardless of the survival odds and the probable health outcomes of the neonates. PRACTICE IMPLICATIONS: Neonates' end-of-life care, and parents' bereavement care, should be standard practices in every NICU, worldwide.

Professional ethics: the case of neonatology.

Neonatal professionals encounter many ethical challenges especially when it comes to interventions at the limit of viability (weeks 22-25 of gestation). At times, these challenges make the moral dilemmas in neonatology tragic and they require a particular set of intellectual and moral virtues. Intellectual virtues of episteme and phronesis, together with moral virtues of courage, compassion, keeping fidelity to trust, and integrity were highlighted as key virtues of the neonatal professional. Recognition of the role of ethics requires a recognition that answering the obvious question (what shall we do?) does not always suffice. Acknowledging the tragic question (is any of the alternatives open to us free from serious moral wrongdoing) and recognizing the ethical dilemmas, where the lines between right and wrong are blurred, leads to actions taken towards establishing ethics frameworks to support decision-making. In neonatology units, such organizational support can help in allowing the team members to recognize the ethical dilemmas, avoid moral distress, and improve team cohesion and the quality of care provided. Only when the organizational structure allows ethical dilemmas to be recognized, adequate decisions can be made.

A Clinical Careography: Steering Life-and-death Decisions Through Care.

OBJECTIVES: In many Euro-American societies, the ideal of patient and family involvement in clinical decision-making prevails. This ideal exists alongside the doctor's obligation and responsibility to make decisions and to be accountable for them. In this article, we explore how medical staff navigate the tension between autonomy and authority when engaging life-and-death decision-making in a Danish NICU. METHODS: The study rests on ethnographic fieldwork in a Danish NICU, involving participant observations in everyday care and decision-making work and semistructured interviews with staff and parents. All interviews were taped and transcribed. The empirical material was analyzed using thematic coding and validated in discussions with staff, parents, and social scientists. RESULTS: Decisions are relational. Multiple moves, spaces, temporalities, and actors are involved in life-and-death decisions in the NICU. Therefore, the concept of medical decision-making fails to do justice to the complex efforts of moving infants in or out of life. Yet, many of these decision-making moments are staged, timed, and coordinated by medical staff. Therefore, we introduce an alternative vocabulary for talking about life-and-death decision-making in neonatology to help us attend to the moral stakes, the emotional tenor, and the fine-grained mechanisms of authority implied in such decisions around tiny infants. CONCLUSIONS: We conceptualize decisions as an art of "careography." Careography is the work of aligning care for the infant, care for the parents, care for staff, care for other infants, and care for society at large, in the process of deciding whether it is best to continue or withdraw life support.

Justified by What? Three Ways to Provide an Ethical Basis for Neonatal Policies.

In this article, I identify 3 ways of justifying neonatal policies of when to provide life-saving treatment to infants who were born extremely premature: by appealing to universal principles or rights, to considerations of the best interests of the children, or to considerations of the best interests of the families. I go on to show how each of these justifications can be used to characterize the discourse on neonatal policies in 1 of the Scandinavian countries.

Do Sociocultural Factors Influence Periviability Counseling and Treatment More Than Science? Lessons From Scandinavia.

All of us (doctors, parents, bioethicists, and health policy makers) think differently about premature infants who require neonatal intensive care than we do about other patients who are critically ill. In most other clinical circumstances, those that involve patients other than premature infants, our first impulse when confronted with a patient in an emergency is to do whatever we can to rescue the patient. We offer life-sustaining treatments first and ask questions later. With extremely premature infants, by contrast, we first ask questions, ponder our options, and try to develop policies about whether it is appropriate to try to save these infants. We wonder aloud whether these tiny patients are even worth saving. In most countries that have NICUs, and in many hospitals, doctors and policy makers have explicitly specified which infants ought to be offered life-sustaining treatment and which should be allowed to die. Regarding the treatment of infants who are born at the borderline of viability, there are markedly distinct approaches in Sweden, Norway, and Denmark. In each country, the prevailing approaches were developed after careful consideration of many factors, including public sentiment, professional preferences, reported outcomes, philosophical factors, and considerations of cost and cost-effectiveness. In this article, we comment on some of these considerations and the soundness of the resulting practice variations.

La relación enfermera - padres - neonato desde la perspectiva enfermera / The Relationship Nurse-Parents-Newborn from the Nurse Perspective

RESUMEN Introducción: El nacimiento de un niño supone sentimientos de alegría e ilusión. Esta situación se quiebra cuando requiere su ingreso en una Unidad de Neonatología, lo que provoca en los padres tristeza, miedo o culpabilidad. Sienten necesidad de apoyo y, al convertirse en sujetos activos del cuidado de su hijo, disminuye su grado de ansiedad y mejora su satisfacción. La familia constituye el núcleo de desarrollo del recién nacido; y por ello tiene relevancia el papel de la enfermera en la promoción del vínculo familiar. Objetivo: Explorar la relación enfermera - padres - neonato desde la perspectiva enfermera en la Unidad de Neonatología. Métodos: Estudio cualitativo cuyo marco teórico es el Interaccionismo Simbólico. La población objeto de estudio estuvo constituida por profesionales de enfermería de la Unidad de Neonatología del Hospital Universitario La Paz. Los datos se recogieron mediante entrevistas en profundidad y se analizaron bajo Teoría Fundamentada como marco metodológico. Resultados: Se realizaron seis entrevistas y se alcanzó saturación de los datos. Se generaron 20 categorías y 12 subcategorías. Las participantes identificaron elementos que afectan a las interacciones entre la enfermera, los padres y el recién nacido, así como necesidad de individualizar los cuidados durante una evolución no lineal del neonato. Conclusiones: La figura de la enfermera resulta fundamental en el cuidado del recién nacido y de sus padres, de modo que la relación enfermera - padres - neonato resulta compleja, dinámica y única(AU)

ABSTRACT Introduction: A child birth is expected to bring feeling joy and illusion. This situation gets destroyed when the newborn requires admittance into a neonatal care unit, which causes the parents to feel sadness, fear and culpability. They feel the need for support and, by becoming active subjects in their child's care, their anxiety level decreases and their satisfaction improves. The family constitutes the nucleus of development for the newborn. Hence, the importance of nurse role in fostering family ties. Objective: To explore relationship nurse-parents-neonate from the perspective of the neonatal care unit nurse. Methods: Qualitative study whose theoretical framework is symbolic interactionism. The study population was made up by nursing professionals of the neonatal care unit of La Paz University Hospital. Data were collected through in-depth interviews and analyzed using grounded theory as methodological framework. Results: Six interviews were carried out and data saturation was achieved. Twenty categories and 12 subcategories were generated. The participants identified elements affecting the interactions between nurse, parents and newborn, as well as the need for individualizing care during the newborn non-linear evolution. Conclusions: The figure of the nurse is fundamental in the care of the newborn and the parents, which determines that the relationship nurse-parents-neonate is complex, dynamic and unique(AU)

Parental Moral Distress and Moral Schism in the Neonatal ICU.

Ethical dilemmas in critical care may cause healthcare practitioners to experience moral distress: incoherence between what one believes to be best and what occurs. Given that paediatric decision-making typically involves parents, we propose that parents can also experience moral distress when faced with making value-laden decisions in the neonatal intensive care unit. We propose a new concept-that parents may experience "moral schism"-a genuine uncertainty regarding a value-based decision that is accompanied by emotional distress. Schism, unlike moral distress, is not caused by barriers to making and executing a decision that is deemed to be best by the decision-makers but rather an encounter of significant internal struggle. We explore factors that appear to contribute to both moral distress and "moral schism" for parents: the degree of available support, a sense of coherence of the situation, and a sense of responsibility. We propose that moral schism is an underappreciated concept that needs to be explicated and may be more prevalent than moral distress when exploring decision-making experiences for parents. We also suggest actions of healthcare providers that may help minimize parental "moral schism" and moral distress.

Ethical dilemmas of recording and reviewing neonatal resuscitation.

Neonatal resuscitation is provided to approximately 3% of neonates. Adequate ventilation is often the key to successful resuscitation, but this can be difficult to provide. There is increasing evidence that inappropriate respiratory support can have severe consequences. Several neonatal intensive care units have recorded and reviewed neonatal resuscitation procedures for quality assessment, education and research; however, ethical dilemmas sometimes make it difficult to implement this review process. We reviewed the literature on the development of recording and reviewing neonatal resuscitation and have summarised the ethical concerns involved. Recording and reviewing vital physiological parameters and video imaging of neonatal resuscitation in the delivery room is a valuable tool for quality assurance, education and research. Furthermore, it can improve the quality of neonatal resuscitation provided. We observed that ethical dilemmas arise as the review process is operating in several domains of healthcare that all have their specific moral framework with requirements and conditions on issues such as consent, privacy and data storage. These moral requirements and conditions vary due to local circumstances. Further research on the ethical aspects of recording and reviewing is desirable before wider implementation of this technique can be recommended.