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)

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)

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)

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)

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)

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)

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)

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)

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

Background 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)

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)

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)

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

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)

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)

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)

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)

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)

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)

In their first weeks of life preterm infants are deprived of developmentally appropriate stimuli, including their mother’s voice. The current study explores the immediate association of two preterm infant behaviours (open eyes or smiling) with the quality of a mother’s infant-directed speech and singing. Participants are 20 mothers who are asked to speak and sing to their medically stable infants placed in incubators. Eighty-four vocal samples are extracted when they occur in the presence of an infant’s behavioural display and compared (...) with random selections during periods of absence of target behavioural display. The results show that infant-directed maternal voice presents more marked emotional qualities when infants display a behavioural change than when infants are passive and expressionless. Specifically, higher values of mean pitch and maximum sound pressure level, as well as greater variability of these parameters are associated with a behavioural display. (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)

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 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 (...) class='Hi'>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)

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)

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)

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)

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.

Objectives To characterize the prevalence and content of pediatric triage policies.Methods We surveyed and solicited policies from U.S. hospitals with pediatric intensive care units. Policies were analyzed using qualitative methods and coded by 2 investigators.Results Thirty-four of 120 institutions (28%) responded. Twenty-five (74%) were freestanding children’s hospitals and 9 (26%) were hospitals within a hospital. Nine (26%) had approved policies, 9 (26%) had draft policies, 5 (14%) were developing policies, and 7 (20%) did not have policies. Nineteen (68%) (...) institutions shared their approved or draft policy. Eight (42%) of those policies included neonates. The polices identified 0 to 5 (median 2) factors to prioritize patients. The most common factors were short- (17, 90%) and long- (14, 74%) term predicted mortality. Pediatric scoring systems included Pediatric Logistic Organ Dysfunction-2 (12, 63%) and Score for Neonatal Acute Physiology and Perinatal Extensions-II (4, 21%). Thirteen (68%) policies described a formal algorithm. The most common tiebreakers were random/lottery (10, 71%) and life cycles (9, 64%). The majority (15, 79%) of policies specified the roles of triage team members and 13 (68%) precluded those participating in patient care from making triage decisions.Conclusions While many institutions still do not have pediatric triage policies, there appears to be a trend among those with policies to utilize a formal algorithm that focuses on short- and long-term predicted mortality and that incorporates age-appropriate scoring systems. Additional work is needed to expand access to pediatric-specific policies, to validate scoring systems, and to address health disparities. (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)

The provision of intensive care enables the lives of neonates, infants and children to be sustained or extended in circumstances previously regarded as impossible. However, as well as benefits, such care may confer burdens that resultingly frame continuation of certain interventions as futile, conferring more harm than or any, benefit. Subsequently, clinicians and families in the paediatric intensive care unit are often faced with decisions to withdraw, withhold or limit intensive care in (...) order to act in the best interests of the child. An integral consideration in respect of these decisions is that futility is a concept that has to be contextualised for all those involved. Recent high-profile legal cases highlight the professional, clinical, legal and social conflicts that can arise when parents and clinicians have different interpretations of futility. In acknowledging the complexity of these conflicts for clinicians, this paper aims to support a better understanding of futility as an integral concept in such difficult and emotive decisions within professional practice. We utilise the concept of futility to frame how these decisions to withdraw or withhold certain invasive life-prolonging interventions are ethically and legally justifiable, even when they disagree or conflict with parental views. To support clinicians in understanding these decisions, we in part use the familiar bioethical framework of Principlism developed by Beauchamp and Childress. We suggest that understanding legal and ethical analysis of futility ultimately will help clinicians in approaching and reflecting on such decision-making. (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)

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

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)

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)

Background Moral distress is a serious problem for health care personnel. Surveys, individual interviews, and focus groups may not capture all of the effects of, and responses to, moral distress. Therefore, we used a new participatory action research approach—moral conflict assessment (MCA)—to characterize moral distress and to facilitate the development of interventions for this problem. Aim To characterize moral distress by analyzing responses of intensive care unit (ICU) personnel who participated in the MCA process. Research Design (...) In this qualitative study, we invited all ICU personnel at 3 urban hospitals to participate in individual or group sessions using the 8-step MCA tool. These sessions were facilitated by either a clinical ethicist or a counseling psychologist who was trained in this process. During each session, one of the researchers took notes and prepared a report for each MCA which were analyzed using qualitative content analysis. Participants and Research Context A total of 24 participants took part in 15 sessions, individually or in groups; 14 were nurses and nurse leaders, 2 were physicians, and 8 were other health professionals. Ethical Considerations This study was approved by the Providence Health Care/University of British Columbia Behavioural Research Ethics Board. Each participant provided written informed consent. Results The main causes of moral distress related to goals of care, communication, teamwork, respect for patient’s preferences, and the managerial system. Suggested solutions included communication strategies and educational activities for health care providers, patients, family members, and others about teamwork, advance directives, and end-of-life care. Participants acknowledged that using the MCA process helped them to reflect on their own thoughts and use their moral agency to turn a distressing situation into a learning and improvement opportunity. Conclusions Using the MCA tool helped participants to characterize their moral distress in a systematic way, and to arrive at new potential solutions. (shrink)

Background Patient dignity is sometimes neglected in intensive care unit (ICU) settings, which may potentially cause psychological harm to critically ill patients. However, no instrument has been specifically developed to evaluate the behaviors of dignified care among critical care nurses. Aim This study aimed to develop and evaluate ICU Dignified Care Questionnaire (IDCQ) for measurement of self-assessed dignity-conserving behaviors of critical care nurses during care. Methods The instrument was developed in 3 phases. (...) Phase 1: item generation; phase 2: a two-round Delphi survey and a readability pilot study; phase 3: cross-sectional survey with model estimation. The questionnaire was evaluated by item analysis, exploratory and confirmatory factor analysis, assessment of internal consistency reliability, and test-retest reliability. The investigation was conducted using a convenience sample of 392 critical care nurses from 6 cities in Zhejiang Province, China, of which 30 participated in the test-retest reliability survey 2 weeks later. Ethical considerations The study was approved by ethics committee. All participants provided written informed consent before the survey. The questionnaire survey was anonymous. Results The results showed acceptable reliability and validity of the IDCQ. The 17-item final version questionnaire was divided into 2 dimensions: absolute dignity and relative dignity. These two factors accounted for 62.804% of the total variance, and model fitting results were acceptable. The Cronbach’s alpha coefficient of the questionnaire was 0.94, and the test-retest intraclass correlation coefficient (ICC) was 0.88 after 2 weeks. Conclusions This study developed a brief and reliable instrument (IDCQ) to assess dignified care in ICU nursing. It can help critical care nurses identify their behaviors in maintaining patient dignity and discover their deficiencies. It may also serve as a clinical nursing management tool to help reduce patient disrespect experience in ICU. (shrink)

This study was conducted to gain opinions about euthanasia from nurses who work in intensive care units. The research was planned as a descriptive study and conducted with 186 nurses who worked in intensive care units in a university hospital, a public hospital, and a private not-for-profit hospital in Adana, Turkey, and who agreed to complete a questionnaire. Euthanasia is not legal in Turkey. One third (33.9%) of the nurses supported the legalization of euthanasia, whereas 39.8% (...) did not. In some specific circumstances, 44.1% of the nurses thought that euthanasia was being practiced in our country. The most significant finding was that these Turkish intensive care unit nurses did not overwhelmingly support the legalization of euthanasia. Those who did support it were inclined to agree with passive rather than active euthanasia (P = 0.011). (shrink)

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

This research aims to identify the ethical issues perceived by intensive care nurses in their everyday practice. It also aims to understand why these situations were considered an ethical issue and what interventions/strategies have been or are expected to be developed so as to minimize them. Data were collected using a semi-structured interview with 15 nurses working at polyvalent intensive care units in 4 Portuguese hospitals, who were selected by the homogenization of multiple samples. The qualitative (...) content analysis identified end-of-life decisions, privacy, interaction, team work, and health-care access as emerging ethical issues. Personal, team, and institutional aspects emerge as reasons behind the experience of these issues. Personal and team resources are used in and for solving these issues. Moral development and training are the most significant strategies. (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)

There have been few empirical studies into what non-medical factors influence physicians and nurses when deciding about admission and discharge of ICU patients. Information about the attitudes of healthcare professionals about this process can be used to improve decision-making about resource allocation in intensive care. To provide insight into ethical problems that influence the ICU admission and discharge process, we aimed to identify and explore ethical dilemmas healthcare professionals are faced with.