Nudging in Neonatology: Practical Wisdom and Accountability for Reasonableness.

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

Humanity at the Edge: The Moral Laboratory of Feeding Precarious Lives.

At the heart of anthropology and the social sciences lies a notion of human existence according to which humans and animals share the basic need for food, but only humans have the capacity for morality. Based on fieldwork in a pig laboratory, a neonatal intensive care unit (NICU), and a dementia nursing home, we follow practices of feeding precarious lives lacking most markers of human personhood, including the exercise of moral judgment. Despite the absence of such markers, laboratory researchers and caregivers in these three sites do not abstain from engaging in questions about the moral status of the piglets, infants, and people with dementia in their care. They continually negotiate how their charges belong to the human collectivity and thereby challenge the notion of 'the human' that is foundational to anthropology. Combining analytical approaches that do not operate with a fixed boundary between human and animal value and agency with approaches that focus on human experience and virtue ethics, we argue that 'the human' at stake in the moral laboratory of feeding precarious lives puts 'the human' in anthropology at disposal for moral experimentation.

When Rights Just Won't Do: Ethical Considerations When Making Decisions for Severely Disabled Newborns.

Children born with severe handicapping conditions, where survival and quality of survival is indeterminate, present special challenges for families and health-care professionals tasked with deciding the best courses of treatment and care. The case of Baby G presents an opportunity to compare the relative effectiveness of ethical versus rights theories in providing guidance about what obligations are owed to such children at bedside and how those obligations pertain to broader societal duties in a rights framework. We review common theories of determining the "best interests standard" of newborn decision-making and the priority of families to decide on behalf of their children. We then discuss what support the rights framework of the U.N. Convention on the Rights of the Child (CRC) might lend to the best implementation of clinical ethics decision-making. Finally, we conclude that the universal nature of rights theory does not provide the particular, specific guidance needed at the bedside of the critically ill infant.

Beyond Bioethics: A Child Rights-Based Approach to Complex Medical Decision-Making.

This analysis adopts a child rights approach-based on the principles, standards, and norms of child rights and the U.N. Convention on the Rights of the Child (CRC)-to explore how decisions could be made with regard to treatment of a severely impaired infant (Baby G). While a child rights approach does not provide neat answers to ethically complex issues, it does provide a framework for decision-making in which the infant is viewed as an independent rights-holder. The state has obligations to develop the capacity of those who make decisions for infants in such situations to meet their obligations to respect, protect, and fulfill their rights as delineated in the CRC. Furthermore, a child rights approach requires procedural clarity and transparency in decision-making processes. As all rights in the CRC are interdependent and indivisible, all must be considered in the process of ethical decision-making, and the reasons for decisions must be delineated by reference to how these rights were considered. It is also important that decisions that are made in this context be monitored and reviewed to ensure consistency. A rights-based framework ensures decision-making is child-centered and that there are transparent criteria and legitimate procedures for making decisions regarding the child's most basic human right: the right to life, survival, and development.

Tweets, friends, and links: the use of social media by NICU health care providers.

Most of us are connected in some way to contacts through social media. Not only is it a great way to keep in touch and up-to-date but can also be a way to communicate with parents or guardians of patients in the NICU. However, along with the benefits comes the potential for abuse and or the unintentional disclosure of patient information.

End-of-life decisions as bedside rationing. An ethical analysis of life support restrictions in an Indian neonatal unit.

INTRODUCTION: Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective? METHOD: A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, treatment effect, cost effectiveness and evidence for neonates born at 28 and 32 GAW. RESULTS: The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the child's best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India. CONCLUSION: Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders.

Impact of ethics and economics on end-of-life decisions in an Indian neonatal unit.

OBJECTIVE: The aim of this article was to describe how providers in an Indian NICU reach life-or-death treatment decisions. METHODS: Qualitative in-depth interviews, field observations, and document analysis were conducted at an Indian nonprofit private tertiary institution that provided advanced neonatal care under conditions of resource scarcity. RESULTS: Compared with American and European units with similar technical capabilities, the unit studied maintained a much higher threshold for treatment initiation and continuation (range: 28-32 completed gestational weeks). We observed that complex, interrelated socioeconomic reasons influenced specific treatment decisions. Providers desired to protect families and avoid a broad range of perceived harms: they were reluctant to risk outcomes with chronic disability; they openly factored scarcity of institutional resources; they were sensitive to local, culturally entrenched intrafamilial dynamics; they placed higher regard for "precious" infants; and they felt relatively powerless to prevent gender discrimination. Formal or regulatory guidelines were either lacking or not controlling. CONCLUSIONS: In a tertiary-level academic Indian NICU, multiple factors external to predicted clinical survival of a preterm newborn influence treatment decisions. Providers adjust their decisions about withdrawing or withholding treatment on the basis of pragmatic considerations. Numerous issues related to resource scarcity are relevant, and providers prioritize outcomes that affect stakeholders other than the newborn. These findings may have implications for initiatives that seek to improve global neonatal health.

Selection criteria in the NICU: who should get effective critical care?

This paper discusses criteria for admission to the Neonatal Intensive Care Units (NICU). In India there is a severe shortage of NICUs for effective critical care and even government medical colleges do not have full-fledged NICUs. Babies with certain medical conditions have very poor chances of survival even with intensive care. Appropriate selection and referral of infants to the NICU is very important for medical, social and ethical reasons. Formulating selection criteria for admission to NICUs can cut down the number of infants unnecessarily admitted to these units, increase the availability of this special care to those who really need it, maximise the efficient use of resources and reduce the emotional and financial burden on parents whose children will not benefit from intensive care. Certain conditions can be managed effectively without admission to an NICU. Excessive anxiety and false optimism of parents can be addressed by forming a clinical ethics committee in every institution.

Epidemiology, economics, and ethics in the NICU: reflections from 30 years of neonatology practice.

Over the past 30 years, I have noted 4 epidemiological points, each of which, I believe, must inform future conversations between neonatal intensive care unit (NICU) physicians, parents, and policy makers. First, there are no credible arguments against NICU care that rely on invoking cost or distributive justice. NICU dollars are remarkably well targeted to children who will ultimately survive to be discharged, as opposed to die in the NICU. If any rationing arguments are to be made, then they should be directed against sick adults in intensive care units. Second, the vast majority of infants admitted to the NICU, even infants sick enough to require mechanical ventilation, will survive to be discharged home-and every caretaker knows this, every day. Again, these findings stand in sharp contrast to adult patients in intensive care, where discordant predictions of survival are the norm, not the exception. Third, medical caretakers are remarkably poor at predicting which infants will die in the NICU, using either serial illness severity algorithms or serial intuitions. Nearly half of all babies predicted to die in the NICU by either strategy will survive to be discharged nonetheless. Fourth, and finally, medical caretakers seem remarkably good at identifying burdensome outcomes (either death or survival with permanent serious neurological disability) while babies are still sick enough that an alternative (ie, withdrawal of the ventilator) is ethically possible. Only 5% of ventilated extremely low birth weight babies receiving ventilation who are predicted to die before NICU discharge will be alive and neurologically unscathed at 2 years of age.

Utility of morbidity and mortality conference in end-of-life education in the neonatal intensive care unit.

BACKGROUND: A monthly neonatal intensive care unit (NICU) morbidity and mortality conference (M&MC) was used to study the documentation of end-of-life (EOL) care, and integrate related education for staff and trainees. OBJECTIVE: To study the current documentation of comprehensive, interdisciplinary, palliative EOL care in the NICU at the Vanderbilt Children's Hospital and improve it relative to a historical background. DESIGN/METHODS: A survey tool was developed and used at all neonatal M&MCs for 1 year (August 2003 through July 2004), in conducting a prospective chart audit of 50% of NICU deaths. The survey ascertained documentation of EOL care to include the anticipation of death by family and staff; provision of pain management; discussion of ethical and EOL decision-making issues; and the use of supportive services. Clinical education and literature references pertaining to these elements of care were presented in the conferences. RESULTS: Twenty-six surveys were completed (48% of deaths in NICU over the study period). Documentation of EOL care ranged from excellent (pain management, 100%) to poor (spiritual support, 54%). Documentation of all other measures varied from 69% to 92%. Staff and trainees reported educational enhancement of the M&MC, and greater awareness of issues important to EOL care throughout this period. CONCLUSIONS: Areas for improving EOL care exist in the NICU. The M&MC is a familiar venue for incorporating EOL care education for staff and trainees. A survey tool may serve to aid in the assessment of documentation of such care. Staff awareness of, and attention to, EOL issues may be improved through such a mechanism.