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

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

Background:The ability to save the life of an extremely premature baby has increased substantially over the last decade. This survival, however, can be associated with unfavourable outcomes for both baby and family. Questions are now being asked about quality of life for survivors of extreme prematurity. Quality of life is rightly deemed to be an important consideration in high technology neonatal care; yet, it is notoriously difficult to determine or predict. How does one define and operationalise what is considered (...) to be in the best interest of a surviving extremely premature baby, especially when the full extent of the outcomes might not be known for several years?Research question:The research investigates the caregiving dilemmas often faced by neonatal nurses when caring for extremely premature babies. This article explores the issues arising for neonatal nurses when they considered the philosophical and ethical questions about quality of life in babies ≤24 weeks gestation.Participants:Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia.Ethical considerations:Ethical processes and procedures have been adhered to by the researchers.Findings:A qualitative approach was used to analyse the data. The theme ‘difficult choices’ was generated which comprised three sub-themes: ‘damaged through survival’, ‘the importance of the brain’ and ‘families are important’. The results show that neonatal nurses believed that quality of life was an important consideration; yet they experienced significant inner conflict and uncertainty when asked to define or suggest specific elements of quality of life, or to suggest how it might be determined. It was even more difficult for the nurses to say when an extremely premature baby’s life possessed quality. Their previous clinical and personal experiences led the nurses to believe that the quality of the family’s life was important, and possibly more so than the quality of life of the surviving baby. This finding contrasts markedly with much of the existing literature in this field.Conclusion:Quality of life for extremely premature babies was an important consideration for neonatal nurses; however, they experienced difficulty deciding how to operationalise such considerations in their everyday clinical practice. (shrink)

Improved life sustaining technology in the neonatal intensive care unit (NICU) has resulted in an increased probability of survival in extremely premature babies. Miracle baby stories in the popular press are a regular occurrence and these reports are often the first source from which the general public learn about extremely premature babies. The research from which this paper is drawn sought to explore the care‐giving and ethical dilemmas of neonatal nurses when caring for extremely premature babies 24 weeks (...) gestation and less. This current paper aims to outline the views of neonatal nurses on miracle baby stories in the media. Data were collected via a questionnaire to 760 Australian neonatal nurses with 414 returned, representing a response rate of 54.4%. Narrative was collected from semi‐structured interviews with 24 experienced neonatal nurses in NSW, Australia. A qualitative approach utilising thematic analysis was utilised to analyse the data. The theme the myth of the miracle baby is seen as generating myths and unrealistic expectations on the part of vulnerable families and the public. Neonatal nurses, as the primary caregivers for tiny babies and their families, viewed popular media publications with suspicion, believing published reports to be incomplete, inaccurate and biased towards the positive. (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)

Historically, the care of hospitalized children has evolved from being performed in isolation from parents to a situation where the parents and the child are regarded as a unit, and parents and nurses as equal partners in the child’s care. Parents are totally dependent on professionals’ knowledge and expertise, while nurses are dependent on the children’s emotional connection with their parents in order to provide optimal care. Even when interdependency exists, nurses as professionals hold the power to decide whether and (...) to what extent parents should be involved in their child’s care. This article focuses on nurses’ responsibility to act ethically and reflectively in a collaborative partnership with parents. To illuminate the issue of nurses as moral practitioners, we present an observation of contemporary child care, and discuss it from the perspective of the Danish moral philosopher KE Løgstrup and his book The ethical demand. (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)

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

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)

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)

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)

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 As Korean neonatal nurses frequently experience the deaths of infants, moral distress occurs when they provide end-of-life care to the infants and their families. Although they need to care for the patients’ deaths and consequently experience burnout and turnover due to moral distress from the situation, there is a lack of a support for nurses. Moreover, not much information is available on the moral distress of neonatal nurses. There is a need to better understand Korean neonatal (...) nurses’ moral distress to develop and implement appropriate supports. Objective This study aimed to describe nurses’ experience of moral distress when they provide end-of-life care to infants and their families in neonatal intensive care units. Research design This is a secondary analysis qualitative study. Content analysis was performed based on Corley’s theory of moral distress to develop a codebook and identify themes regarding moral distress among the nurses. Participants and research context Qualitative data were collected from 20 nurses working in two NICUs in Seoul, South Korea. Ethical considerations The original study obtained permission from a university’s institutional review board (IRB). This secondary analysis study obtained the exemption from another university’s IRB. Nurses’ participation was voluntary and confidential. Findings The nurses’ moral distress was derived when they faced moral constraints and/or moral conflicts. Two distinct categories of moral constraints and four distinct categories of moral conflicts were identified among the neonatal nurses. In addition, impacts of moral distress on patients and nurses were identified. Conclusions This study identified occasions neonatal nurses experience moral distress, and thus can guide in developing and implementing effective interventions to decrease their moral distress and improve their resilience in end-of-life care by providing insight into neonatal nurses’ needs for support in end-of-life care. (shrink)

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

The neonatal nurse forges a unique partnership with parents of a critically ill infant who are often, unexpectedly, exposed to the bewildering and complex environment that is neonatal intensive care, helping navigate them through this unchartered territory. Our role is multifaceted, with the primary focus of providing care in the best interests of our patients.1 This is realised through the provision of high-quality evidence-based care, advocating for the needs of the baby and family, and when required acting as (...) a linchpin bridging communication channels between medical and nursing teams, other allied health professionals, and the family.1 2 Ordinarily, the birth of an extremely preterm infant is a distressing, life-changing event for parents; this is further complicated by a number of additional factors in this complex scenario3. (shrink)

Three clinical cases of very ill neonates exemplifying extreme ethical situations for nurses are interpreted through Arendt's concepts of life and natality, and Agamben's critique of bare life. Agamben's notions of form-of-life, as the inseparability of zoe/bios, and testimony are offered as the potential foundation of nursing ethics.

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)

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)

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

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)

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

The concept of suffering is discussed among those who are cognitively aware and verbally capable to express their suffering. Due to immaturity, preterm infants’ abilities to express suffering are limited. Relieving suffering is an ethical and juridical demand of good nursing care. The purpose of this study is to describe nurses’ perceptions of the suffering of preterm infants. A descriptive qualitative approach was selected. Data were collected from essays written by nurses (n = 19) working in the neonatal (...) intensive care unit. Inductive content analysis guided by the research question was performed. The nurses described individually determined suffering of the preterm infants according to four categories: suffering ruled by maturation, existence of suffering, individual threshold of suffering and interpreting the cues of suffering. Suffering of preterm infants is manifested by population-specific features, emphasising the need to develop sensitive interventions for relieving their suffering. (shrink)

In this article I will argue that futile medical and nursing care is not only inefficacious but that it may be harmful to the patient and also to health professionals, who may be diminished both as clinicians and as persons if they are not able to give appropriate care to dying patients and their families. I discuss futile care in intensive care units because the opportunities and the temptation to provide futile care in these settings is higher than, for (...) instance, in internal medicine and nursing home care. I argue, following two nurse ethicists, Carol Taylor and Colleen Scanlon, that, even if nurses are not the initiators of futile care, they play an important role in its prevention because of their clinical expertise. They can do this by convening ‘patient care conferences’ when they recognize the need to bring together the various parties that have conflicting expectations. These conferences would then result in appropriate palliative care. The nurses providing this care would demonstrate their understanding of the process whereby living becomes the process of dying. (shrink)

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

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)

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)

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 management of an infant after a decision to withdraw active treatment creates dilemmas. Both lingering death and active killing are undesirable, but palliative interventions can hasten death. We investigated what staff on our neonatal unit thought were the limits of acceptable practice and why. We administered a structured interview to elucidate their views, and asked them to justify their answers. The interviews were analysed quantitatively and qualitatively. A total of 25 participants (15 nurses and 10 doctors) were recruited. (...) 80% emphasized the importance of pain relief following withdrawal, 60% mentioned meeting parental needs at that time. 76% agreed that death can be a desired consequence of withdrawal, yet 52% felt that death should never be hastened. 96% felt that morphine is acceptable after withdrawal, and 72% would give a higher than normal dose if necessary. 56% would stop paralysis at extubation but not reverse it, while 24% would continue paralysis. 16% would consider a drug that ended life instantly in some cases. A wide variety of views emerged, but there were two main positions, a cautious majority, and a more proactive minority. Apparent contradictions within the majority position could be explained using the doctrine of double effect and the acts and omissions distinction. (shrink)

Background: Families and clinicians must often weigh competing priorities when making medical decisions for a pediatric patient at the end of life. Few empirical data exist regarding the importance that clinicians place on varying priorities and whether clinical practice conforms to decision-making standards discussed in the literature. Methods: We administered a discrete choice experiment to understand the relative importance of nine pediatric end-of-life decision-making priorities using responses from 364 nurses and physicians from three intensive care units (ICUs) (pediatric ICU, pediatric (...) cardiothoracic ICU, neonatal ICU) in a large children's hospital, with a 54% response rate. We used latent class analysis to characterize subgroups of health professionals based on their patterns of importance for the nine attributes and examined differences in class membership using multinomial logistic regression. Results: Eighty-two percent of respondents were nurses, consistent with the proportion of nurse and physician staff in the units. Latent class analysis separated our sample of health professionals into five distinct classes. All five groups rated the child's comfort and the best interests as most important but differed regarding how they valued other considerations: Group 1 rated highly consideration of the entire family and medical judgment; Group 2, the entire family's interests, parents’ preferences, and religious beliefs; Group 3, maintaining harmony between parents and medical team; Group 4, responsible use of medical resources; and Group 5, medical evidence and prolonging the child's life. Those with more years of experience were less likely to fall in Group 5 (medical evidence/life-prolonging). Profession was not associated with group membership. Conclusions: Nurses and physicians who care for dying children prioritize foremost the child's best interests and comfort but then possess varying secondary priorities about what is most important when making medical decisions. Pediatric palliative care and ethics consultative services should be aware of and prepared to address these differing concerns. (shrink)

The Spring 1999 issue of CambridgeQuarterly adds to the growing body of academic inquiry into the goals of neonatal intensive care practices. Muraskas and colleagues thoughtfully presented the possibility of nontreatment for neonates born at or under 24 weeks gestation. Jain, Thomasma, and Ragas explained that quality of future life must not be ignored in clinical deliberation. And Hefferman and Heilig described once again the dilemmas nurses face when caring for potentially devastated neonates kept alive by technology. These authors (...) take brave steps by publicly questioning the trend of intensive medical support for most every American-born product of conception. But many questions addressing the goals of neonatal intensive care remain, and few authors have actually tried to distill these goals. (shrink)

The aim of this study was to analyse experiences of moral concerns in intensive care nursing. The theoretical perspective of the study is based on relational ethics, also referred to as ethics of care. The participants were 36 intensive care nurses from 10 general, neonatal and thoracic intensive care units. The structural characteristics of the units were similar: a high working pace, advanced technology, budget restrictions, recent reorganization, and shortage of experienced nurses. The data consisted of the participants’ (...) examples of ethical situations they had experienced in their intensive care unit. A qualitative content analysis identified five themes: believing in a good death; knowing the course of events; feelings of distress; reasoning about physicians’ ‘doings’ and tensions in expressing moral awareness. A main theme was formulated as caring about - caring for: moral obligations and work responsibilities. Moral obligations and work responsibilities are assumed to be complementary dimensions in nursing, yet they were found not to be in balance for intensive care nurses. In conclusion there is a need to support nurses in difficult intensive care situations, for example, by mentoring, as a step towards developing moral action knowledge in the context of intensive care nursing. (shrink)

Immigrant nurses make up a large percentage of the Australian nursing workforce. Since the support in the workplace is expected to be inclusive for all nurses, the aim of this article is to explore how support and opportunities for professional growth, learning and development are distributed across different categories of nurses working in a neonatal intensive care unit (NICU). An ethnographic approach has opened an examination of the everyday workplace practices in the NICU to gain insight into how (...) nurses made sense of the social and power relations occurring between themselves and their senior colleagues and how they experienced the support and opportunities they received in their workplace. As today's workplaces such as the NICU are diverse in races, culture and experiences, the concepts of intersectionality and cultural safety assisted in identifying inequality and injustice related to such diversity. The results showed how patronage relations rendered nurses with immigrant status with major disadvantage and left them clinically and culturally vulnerable. Such inequity defeats the reasons for encouraging skilled migration of nurses and poses questions on the cultural competency of recruiting organisations. Considering how cultural safety might guide staff development offers opportunities for authentic support to culturally diverse nurses. (shrink)

Background:Moral distress is a significant concern for nurses as it can lead to burnout and intentions to leave the profession. Pediatric nurses encounter stressful and ethically challenging situations when they care for suspected victims of child maltreatment. Data on pediatric nurses’ moral distress are limited, as most research in this field has been done in adult inpatient and intensive care units.Aim:The purpose of this study was to describe pediatric nurses’ moral distress and evaluate the impact of caring for suspected victims (...) of child maltreatment on nurses’ moral distress, burnout, and intention to leave. Design and method: This descriptive cross-sectional correlational study was conducted in a mid-Atlantic, urban area Magnet pediatric level I trauma center that cares for over 1800 cases of suspected child maltreatment annually. An anonymous electronic survey was sent to all the nurses working at the hospital.Ethical considerations:Institutional Review Board approval was received from the first author’s university and the hospital where the study was conducted.Findings:Overall, nurses ( N = 146) reported low levels of moral distress with a mean score of 59.54 (SD = 49.22) and a range of 0–300 on the Moral Distress Scale Neonatal–Pediatric version. Although the frequency of caring for suspected child maltreatment victims did not affect nurses’ moral distress, caring for victims with fatal maltreatment contributed to nurses’ intention to leave, χ2(1) = 5.35, p = 0.02.Conclusion:The results of this study add to the understanding of moral distress in pediatric nursing. Caring for victims with fatal maltreatment impacts pediatric nurses’ intention to leave. (shrink)

Derek Nurse looks at variations in the form and function of tense and aspect in Bantu, a branch of Niger-Congo, the world's largest language phylum. Bantu languages are spoken in central, eastern, and southern sub-Saharan Africa south of a line between Nigeria and Somalia. By current estimates there are between 250 and 600 of them, as yet neither adequately classified nor fully described. Professor Nurse's account is based on data from more than 200 Bantu languages and varieties, a representative sample (...) of which is freely available on the publisher's website. He devotes substantial chapters to the analysis and comparison of the different tense and aspect systems found in Bantu. He also examines the verbal categories with which they interact, including negation and focus. Synchronic and diachronic perspectives are interwoven throughout the book. Following a brief history of Bantu over the last five thousand years, the final two chapters look systematically at the history of tense and aspect in Bantu. The first deals with the reconstruction of the earlier forms from which contemporary structures, morphemes, and categories are derived, and the second with the processes of change, including grammaticalization, by means of which older analytical structures and independent lexical items moved as they became incorporated as grammatical inflections and categories. (shrink)

Despite achieving broad acceptance of the moral case for treating animals fairly, the animal rights movement has reached an impasse concerning legal rights for animals. Zoopolis proposes a new approach to addressing this failure: integrating animal interests into human society via political institutions and practices. Zoopolis’s central theory that humans owe animals citizenship rights in a shared human-animal society, but that acceptance of responsibilities by animals also is required, has merit for the advancement of animal rights discourse. But its anthropocentric (...) approach, which itself exerts power over animals, necessitating suppression and policing of animals’ natural behavior, is problematic. (shrink)

The renowned Nobel Prize-winning scientist's elegant and concise explanation of the fundamental ideas in biology and their uses today. Hailed by Philip Pullman as "a great communicator" who is also "as distinguished a scientist as there could be," Paul Nurse writes with delight at life's richness and a sense of the urgent role of biology in our time. With What Is Life? he delivers a brief but powerful work of popular science in the vein of Carlo Rovelli's Seven Brief Lessons (...) in Physics. Nurse takes readers on a wondrous journey through five fundamental biological ideas-the Cell, the Gene, Evolution by Natural Selection, Life as Chemistry, and Life as Information-introducing the scientists who made the most important advances and taking us into his own lab to give us a sense of the thrill of scientific discovery. In a final chapter, Nurse addresses biology's most pressing ethical issues (including gene-editing, genetic testing, and genetically modified crops), and he concludes with a stirring encomium to biology's role in tackling infectious disease. (shrink)

Life is all around us, abundant and diverse, it is extraordinary. But what does it actually mean to be alive? Nobel prize-winner Paul Nurse has spent his career revealing how living cells work. In this book, he takes up the challenge of defining life in a way that every reader can understand. It is a shared journey of discovery; step by step he illuminates five great ideas that underpin biology. He traces the roots of his own curiosity and knowledge to (...) reveal how science works, both now and in the past. Using his personal experiences, in and out of the lab, he shares with us the challenges, the lucky breaks, and the thrilling eureka moments of discovery. To survive the challenges that face the human race today - from climate change, to pandemics, loss of biodiversity and food security - it is vital that we all understand what life is. (shrink)