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Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie’s parents raised £1.3 million (∼$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie’s best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States.

OBJECTIVES: With evidence of benefits of pediatric palliative care (PPC) integration, we sought to characterize subspecialty PPC referral patterns and end of life (EOL) care in pediatric advanced heart disease (AHD). METHODS: In this retrospective cohort study, we compared inpatient pediatric ( RESULTS: Of 3409 early-epoch admissions, there were 110 deaths; the late epoch had 99 deaths in 4032 admissions. In the early epoch, 45 patients (1.3% admissions, 17% deaths) were referred for PPC, compared with 146 late-epoch patients (3.6% admissions, 58% deaths). Most deaths (186 [89%]) occurred in the cardiac ICU after discontinuation of life-sustaining therapy (138 [66%]). Medical therapies included ventilation (189 [90%]), inotropes (184 [88%]), cardiopulmonary resuscitation (68 [33%]), or mechanical circulatory support (67 [32%]), with no temporal difference observed. PPC involvement was associated with decreased mechanical circulatory support, ventilation, inotropes, or cardiopulmonary resuscitation at EOL, and children were more likely to be awake and be receiving enteral feeds. PPC involvement increased advance care planning, with lower hospital charges on day of death and 7 days before (respective differences $5058 [P = .02] and $25 634 [P = .02]). CONCLUSIONS: Pediatric AHD deaths are associated with high medical intensity; however, children with PPC consultation experienced substantially less invasive interventions at EOL. Further study is warranted to explore these findings and how palliative care principles can be better integrated into care.

One of the earliest controversies in the modern history of bioethics was known at the time as "the Hopkins Mongol case," involving an infant with Trisomy 21 and duodenal atresia whose parents declined to consent to surgery. Fluids and feeding were withheld, and the infant died of dehydration after 15 days. The child’s short life had a profound impact on the author’s career and that of several others and ultimately led to changes in the care of children and adults with disabilities and the way difficult end-of-life decisions are made in US hospitals today. It also contributed to the growth of the modern bioethics movement and scholarship focused on pediatric bioethics issues.

The alleviation of suffering has always been central to the care of the sick. Yet as medical technology has advanced and life-sustaining treatments multiplied, medicine's capacity to both prevent and create suffering has grown exponentially. In pediatric medicine, the ability to stave off death with life-sustaining treatments allows children to survive but also to suffer in ways that are diverse and unprecedented. However, although parents and pediatric clinicians broadly agree that all children can suffer, there is little published literature in which researchers analyze or clarify the concept of pediatric suffering. This gap is worrisome, especially in light of growing concerns that the label of suffering is used to justify end-of-life decision-making and mask quality-of-life determinations for pediatric patients with profound neurologic impairment. Moreover, the awareness that some children can experience suffering but cannot communicate whether and how they are suffering creates a problem. Does the determination of suffering in a nonverbal child lie in the judgement of clinicians or parents? In this article, I will address several important questions related to the suffering of children through an analysis of two prevalent conceptualizations of pediatric suffering and suggest a possible avenue forward for future scholarship.

Although parents are typically the most appropriate decision-makers for their children, there are limits to this authority. Medical providers may be ethically obligated to seek state intervention against a parental decision if the parent places a child at significant and imminent risk of serious harm. When parents make medical decisions for their children, they assess both the projected benefits and risks of their choices for their family. These assessments are impacted by uncertainty, which is a common feature of neonatal intensive care. The relative presence or absence of uncertainty may impact perceptions of parental decisions and a medical provider’s decision to seek state intervention to overrule parents. In this article, we propose a model integrating prognostic uncertainty into pediatric decision-making that may aid providers in such assessments. We will demonstrate how to apply this model to 3 neonatal cases and propose that the presence of greater uncertainty ought to permit parents greater latitude to incorporate family values into their decision-making even if these decisions are contradictory to the recommendations of the medical team.

The "Baby Doe" case of the early 1980s was marked by considerable controversy, primarily regarding the legal response of the federal government to the case at the time. In the decades that followed, the decision-making for children with trisomy 21, like Baby Doe, has been substantially reevaluated. The data, the assumptions about quality of life that were based on those data, and the ethical principles underpinning the decision-making in the Baby Doe case have all evolved significantly over time. The present strategies for decision-making for children with trisomy 13 and 18 appear to be following a similar pattern. The data, quality-of-life assumptions based on those data, and even the ethical principles underlying the decision-making for these children are currently being reexamined. Children with trisomy 13 and 18 are, in this regard, the next Baby Doe(s).

Pediatricians regularly care for children who have experienced child maltreatment. Child maltreatment is a risk factor for a broad range of mental health problems. Issues specific to child maltreatment make addressing emotional and behavioral challenges among maltreated children difficult. This clinical report focuses on 2 key issues necessary for the care of maltreated children and adolescents in pediatric settings: trauma-informed assessments and the role of pharmacotherapy in maltreated children and adolescents. Specific to assessment, current or past involvement of the child in the child welfare system can hinder obtaining necessary information or access to appropriate treatments. Furthermore, trauma-informed assessments can help identify the need for specific interventions. Finally, it is important to take both child welfare system and trauma-informed assessment approaches into account when considering the use of psychotropic agents because there are critical diagnostic and systemic issues that affect the prescribing and discontinuing of psychiatric medications among children with a history of child maltreatment.

With increasing focus in the last decade on post–cardiac arrest care in pediatrics, return of spontaneous circulation, survival rates, and neurologic outcome have improved. As part of this postarrest care, both the American Heart Association and the American Academy of Neurology state it is reasonable to consider targeted temperature management in pediatric comatose patients, although this care is challenging and time sensitive, with many gaps in knowledge remaining. Many pediatric patients will still not survive or will suffer severe neurocognitive impairment despite the therapeutic arsenal provided. Adult guidelines suggest providing postarrest supportive care and limiting prognosis discussions with families until after 72 hours of therapy, but pediatric clinicians are advised to consider a multitude of factors given the lack of data. What, then, should clinicians do if family members of a patient who has been resuscitated request the withdrawal of all life support in the 24 hours immediately postarrest? In this Ethics Rounds, we present such a case and the responses of different clinicians and bioethicists.

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

An infant with complex congenital heart disease suffers a prolonged cardiac arrest with minutes of anoxia. He is left with severe brain damage and profound neurologic impairment. He no longer responds to caregivers. Much of the time, he cries and grimaces as if in pain. He has required increasing sedation to control these symptoms. His parents live hours from the hospital and seldom visit. When their infant’s situation is explained to them over the telephone, they request that doctors “do everything to keep him alive.” His bedside caregivers report high levels of moral and psychological distress and frequently discuss J.S.’s “suffering.” An ethics consultation is requested, asking whether it is permissible to withdraw life support despite the parents’ request that therapy continue.

Most critical care interventions for children occur in the framework of a supportive environment with loving parents that are present at the bedside to help to guide medical interventions through shared decision-making. What happens, however, if the parents are precluded from being at the bedside because of legal entanglements? How should clinical decisions progress in those cases? In this Ethics Rounds, we present the case of an infant with severe hypoxic-ischemic encephalopathy at birth whose mother was incarcerated shortly after delivery. We explore clinical and legal challenges that the medical team faces in determining best interests for the infant in this context and difficulties in deciding what therapies to provide and for how long.

BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process. METHODS: We conducted a prospective exploratory study in 2 Dutch University Medical Centers. RESULTS: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians’ and parents’ communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical information, explaining their preferred course of action, and informing parents about the decision being reached by the team. Only in 2 cases were parents asked to share in the decision-making. Despite their intense emotions, most parents made great effort to actively participate in the conversation. They did this by asking for clarifications, offering their preferences, and reacting to the decision being proposed (mostly by expressing their assent). In the few cases where parents strongly preferred LST to be continued, the physicians either gave parents more time or revised the decision. CONCLUSIONS: We conclude that parents are able to handle a more active role than they are currently being given. Parents’ greatest concern is that their child might suffer.

Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient’s illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.

Generally, wide latitude is granted to parents when making decisions for their child on the basis of the wide acceptance of the special relationship between parent and child and the important role played by parents in the lives of children. However, when high-risk decisions are made, health care teams serve as an important societal safeguard that questions whether a parent is an appropriate decision-maker for their child. Child advocacy is an essential function of the pediatric health care team. In this ethics rounds, we examine a case of an infant with a complex medical condition requiring prolonged hospitalization that results in a clash of understanding between a mother and medical team when the mother abruptly requests removal of life-sustaining treatment. We present an ethical decision-making framework for such cases and examine the impact of barriers and unconscious bias that can exclude parents from their rightful role in directing care for their child.

BACKGROUND AND OBJECTIVES: Pediatric bioethics presumes that decisions should be taken in the child’s best interest. If it’s ambiguous whether a decision is in the child's interest, we defer to parents. Should parents be permitted to consider their own interests in making decisions for their child? In the Netherlands, where neonatal euthanasia is legal, such questions sometimes arise in deciding whether to hasten the death of a critically ill, suffering child. We describe the recommendations of a national Dutch committee. Our objectives were to analyze the role of competing child and family interests and to provide guidance on end-of-life decisions for doctors caring for severely ill newborns. METHODS: We undertook literature review, 7 consensus meetings in a multidisciplinary expert commission, and invited comments on draft report by specialists’ associations. RESULTS: Initial treatment is mandatory for most ill newborns, to clarify the prognosis. Continuation of treatment is conditional on further diagnostic and prognostic data. Muscle relaxants can sometimes be continued after withdrawal of artificial respiration without aiming to shorten the child's life. When gasping causes suffering, or protracted dying is unbearable for the parents, muscle relaxants may be used to end a newborn's life. Whenever muscle relaxants are used, cases should be reported to the national review committee. CONCLUSIONS: New national recommendations in the Netherlands for end-of-life decisions in newborns suggest that treatment should generally be seen as conditional. If treatment fails, it should be abandoned. In those cases, palliative care should be directed at both infant and parental suffering. Sometimes, this may permit interventions that hasten death.

This multiorganizational literature review was undertaken to provide an evidence base for determining whether recommendations for out-of-hospital termination of resuscitation could be made for children who are victims of traumatic cardiopulmonary arrest. Although there is increasing acceptance of out-of-hospital termination of resuscitation for adult traumatic cardiopulmonary arrest when there is no expectation of a good outcome, children are routinely excluded from state termination-of-resuscitation protocols. The decision to withhold resuscitative efforts in a child under specific circumstances (decapitation or dependent lividity, rigor mortis, etc) is reasonable. If there is any doubt as to the circumstances or timing of the traumatic cardiopulmonary arrest, under the current status of limiting termination of resuscitation in the field to persons older than 18 years in most states, resuscitation should be initiated and continued until arrival to the appropriate facility. If the patient has arrested, resuscitation has already exceeded 30 minutes, and the nearest facility is more than 30 minutes away, involvement of parents and family of these children in the decision-making process with assistance and guidance from medical professionals should be considered as part of an emphasis on family-centered care because the evidence suggests that either death or a poor outcome is inevitable.

Although clinicians may value respecting a patient’s or surrogate’s autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical practice. Reliance on an individualistic conception such as the “in-control agent” model prioritizes self-sufficiency in decision-making and highlights a decision-maker’s capacity to have reason transcend one’s emotional experience. An alternative model of autonomy, relational autonomy, highlights the social context within which all individuals exist and acknowledges the emotional and embodied aspects of decision-makers. These 2 conceptions of autonomy lead to different interpretations of several aspects of ethical decision-making. The in-control agent model believes patients or surrogates should avoid both the influence of others and emotional persuasion in decision-making. As a result, providers have a limited role to play and are expected to provide medical expertise but not interfere with the individual’s decision-making process. In contrast, a relational autonomy approach acknowledges the central role of others in decision-making, including clinicians, who have a responsibility to engage patients’ and surrogates’ emotional experiences and offer clear guidance when patients are confronting serious illness. In the pediatric setting, in which decision-making is complicated by having a surrogate decision-maker in addition to a patient, these conceptions of autonomy also may influence expectations about the role that adolescents can play in decision-making.

OBJECTIVE: To determine 1-year survival and major neonatal morbidities (intracranial hemorrhage grade >2, cystic periventricular leukomalacia, retinopathy of prematurity grade >2, necrotizing enterocolitis, severe bronchopulmonary dysplasia) among extremely preterm infants in Norway in 2013–2014, and to compare the results to the first Norwegian Extreme Prematurity Study 1999–2000 and similar contemporary European population-based studies. METHODS: Population-based study of all infants born at 22 through 26 weeks’ gestation in Norway in 2013–2014. Prospectively collected data were obtained by linking data in the Norwegian Neonatal Network to the Medical Birth Registry of Norway. RESULTS: Of 420 infants (incidence 3.5 per 1000 births), 145 were stillborn (34.5%), 275 were live-born (82.3% of the 334 fetuses alive at admission for obstetrical care), and 251 (91.3% of live-born infants) were admitted to a neonatal unit. The survival among live-born infants was 18% at 22 weeks, 29% at 23 weeks, 56% at 24 weeks, 84% at 25 weeks and 90% at 26 weeks (for each week increment in gestational age: odds ratio 3.3; 95% confidence interval, 2.4–4.4). Among infants surviving to 1 year of age, major neonatal morbidity was diagnosed in 55%. Decreasing gestational age was moderately associated with rates of major morbidity (odds ratio 1.6; 95% confidence interval, 1.2–2.2). CONCLUSIONS: Compared to the previous 1999–2000 cohort, the rate of stillbirth before admission to an obstetrical unit increased, whereas the survival rate among live born infants was similar in our 2013–2014 cohort. Neonatal morbidity rates remain high among extremely preterm infants.

One of the most difficult decisions that doctors and parents must make is the decision to withdraw life-sustaining treatment. Doctors find it easier to withdraw treatments in situations where withdrawal will be rapidly fatal rather than in situations in which treatment withdrawal will lead to a prolonged dying process. Mechanical ventilation is usually such a treatment. Withdrawal of ventilation generally leads to the patient’s rapid demise. Doctors may tell parents that death will occur quickly after a ventilator is withdrawn. But what happens when the doctors are wrong and a patient survives without life support? What should doctors do next? We present a case in which that happened and asked 3 experts to comment on the case. Stefan Kutzsche is a senior consultant in neonatology at Oslo University Hospital Ulleval in Norway. John Colin Partridge is a neonatologist and professor of pediatrics at University of California, San Francisco. Steven R. Leuthner is a neonatologist and professor of pediatrics and bioethics at the Medical College of Wisconsin. They each recommend slightly different approaches to this dilemma.

Both dying children and their families are treated with disrespect when the presumption of consent to cardiopulmonary resuscitation (CPR) applies to all hospitalized children, regardless of prognosis and the likely efficacy of CPR. This “opt-out” approach to CPR fails to appreciate the nuances of the special parent–child relationship and the moral and emotional complexity of enlisting parents in decisions to withhold CPR from their children. The therapeutic goal of CPR is not merely to resume spontaneous circulation, but rather it is to provide circulation to vital organs to allow for treatment of the underlying proximal and distal etiologies of cardiopulmonary arrest. When the treating providers agree that attempting CPR is highly unlikely to achieve the therapeutic goal or will merely prolong dying, we should not burden parents with the decision to forgo CPR. Rather, physicians should carry the primary professional and moral responsibility for the decision and use a model of informed assent from parents, allowing for respectful disagreement. As emphasized in the palliative care literature, we recommend a directive and collaborative goal-oriented approach to conversations about limiting resuscitation, in which physicians provide explicit recommendations that are in alignment with the goals and hopes of the family and emphasize the therapeutic indications for CPR. Through this approach, we hope to help parents understand that “doing everything” for their dying child means providing medical therapies that ameliorate suffering and foster the intimacy of the parent–child relationship in the final days of a child’s life, making the dying process more humane.

We present a case of a fetal diagnosis of tricuspid atresia (TA). The pregnant woman and her husband requested that the baby be treated with only palliative care. The cardiologist did not think it would be appropriate to withhold life-prolonging surgery once the infant was born. The neonatologist argued that outcomes for TA are similar to those for hypoplastic left heart syndrome, and the standard practice at the institution was to allow parents to choose surgery or end-of-life care for those infants. The team requested an ethics consultation to assist in determining whether forgoing life-prolonging interventions in this case would be ethically supportable. In this article, we ask a pediatric intensivist, a pediatric cardiologist, and a neonatologist to discuss the ethics of withholding life-sustaining treatment of a baby with TA.

CONTEXT: A high relapse rate after discontinuation of desmopressin treatment of pediatric enuresis is consistently reported. Structured withdrawal strategies have been used to prevent relapse. OBJECTIVE: To assess the efficacy of a structured withdrawal strategy of desmopressin on the relapse-free rate for desmopressin responder pediatric enuresis. DATA SOURCES: Systematic literature search up to November 2015 on Medline, Embase, Ovid, Science Direct, Google Scholar, Wiley Online Library databases, and related references without language restriction. STUDY SELECTION: Related clinical trials were summarized for systematic review. Randomized controlled trials on the efficacy of structured versus abrupt withdrawal of desmopressin in sustaining relapse-free status in pediatric enuresis were included for meta-analysis. DATA EXTRACTION: Eligible studies were evaluated according to Cochrane Collaboration recommendations. Relapse-free rate was extracted for relative risk (RR) and 95% confidence interval (CI). Effect estimates were pooled via the Mantel–Haenszel method with random effect model. RESULTS: Six hundred one abstracts were reviewed. Four randomized controlled trials (total 500 subjects) of adequate methodological quality were included for meta-analysis. Pooled effect estimates compared with the abrupt withdrawal, structured withdrawal results to a significantly better relapse-free rate (pooled RR: 1.38; 95% CI, 1.17–1.63; P = .0001). Subgroup analysis for a dose-dependent structured withdrawal regimen showed a significantly better relapse-free rate (pooled RR: 1.48; 95% CI, 1.21–1.80; P = .0001). LIMITATIONS: The small number of studies included in meta-analysis represents a major limitation. CONCLUSIONS: Structured withdrawal of desmopressin results in better relapse-free rates. Specifically, the dose-dependent structured withdrawal regimen showed significantly better outcomes.

* Abbreviation: ILCOR — : International Liaison Committee on Resuscitation The 1989 United Nations Convention on the Rights of the Child (UN Convention)1 provides children with the right of the highest attainable standard of health (article 24). All countries in the world except the United States have now ratified this convention, which has implications for national health policy and priorities regarding health care for every child. The convention places an obligation on all public and private health institutions to ensure that the best interest of the child is assessed and taken as a primary consideration in all actions affecting children. The important point emphasized by the United Nations Committee on the Rights of the Child is that, based on the UN Convention, each child has a right to be assessed individually before a decision is made regarding proper treatment. As a consequence, the UN Convention may change practice in handling of newborns in a wider perspective. In neonatology, decisions to initiate or forego intensive care for certain infants such as the extremely immature or those with certain syndromes have been heavily debated. However, in recent years, there has been some change in attitudes compatible with the UN Convention. For instance, The International Liaison Committee on Resuscitation (ILCOR) and the … Address correspondence to Ola Didrik Saugstad, MD, Department of Pediatric Research, Oslo University Hospital, PB 4950 Nydalen, 0424 Oslo, Norway. E-mail: odsaugstad{at}rr-research.no

Pseudotumor cerebri syndrome (PTCS) is characterized by increased intracranial pressure with normal brain parenchyma and cerebrospinal fluid constituents. PTCS after withdrawal of systemic corticosteroids also has been described in children. In contrast, to our knowledge, PTCS after withdrawal of inhaled glucocorticoids has not previously been described. Here we report the case of an 8-year and 6-month-old girl who developed signs and symptoms consistent with PTCS after withdrawal of inhaled glucocorticoids. The patient had excellent adherence to inhaled glucocorticoid therapy for ∼1 year before presentation, after which the therapy was stopped for concern related to poor growth. The withdrawal of inhaled glucocorticoids was associated with the development of severe headaches and diplopia, and further clinical examination led to the patient’s diagnosis of likely PTCS. Although its occurrence is likely rare, clinicians caring for the many children receiving inhaled glucocorticoid therapy should be aware of the potential for PTCS after abrupt withdrawal of such treatment, and consider ophthalmology evaluation if patients report suggestive symptoms, such as headaches or vision changes in this context.

Decisions for critically ill infants with trisomy 18 raise thorny issues about values, futility, the burdens of treatment, cost-effectiveness, and justice. We presented the case of an infant with trisomy 18 to 2 neonatologists with experience in clinical ethics, Annie Janvier and Felix Okah, and to a parent, Barbara Farlow. They do not agree about the right thing to do.

The majority of deaths in infants with hypoxic-ischemic encephalopathy (HIE) follow decisions to withdraw life-sustaining treatment. Clinicians use prognostic tests including MRI to help determine prognosis and decide whether to consider treatment withdrawal. A recently published meta-analysis provided valuable information on the prognostic utility of magnetic resonance (MR) biomarkers in HIE and suggested, in particular, that proton MR spectroscopy is the most accurate predictor of neurodevelopmental outcome. How should this evidence influence treatment-limitation decisions? In this article I outline serious limitations in existing prognostic studies of HIE, including small sample size, selection bias, vague and overly inclusive outcome assessment, and potential self-fulfilling prophecies. Such limitations make it difficult to answer the most important prognostic question. Reanalysis of published data reveals that severe abnormalities on conventional MRI in the first week have a sensitivity of 71% (95% confidence interval: 59%–91%) and specificity of 84% (95% confidence interval: 68%–93%) for very adverse outcome in infants with moderate encephalopathy. On current evidence, MR biomarkers alone are not sufficiently accurate to direct treatment-limitation decisions. Although there may be a role for using MRI or MR spectroscopy in combination with other prognostic markers to identify infants with very adverse outcome, it is not possible from meta-analysis to define this group clearly. There is an urgent need for improved prognostic research into HIE.

OBJECTIVES. The objective of this study was to develop and pretest a questionnaire to assess the practice of withdrawal of life-sustaining treatment in the NICU on the basis of the experiences of bereaved parents.METHODS. We conducted semistructured interviews with 11 parents whose infants had undergone withdrawal of life-sustaining treatment in the NICU at McMaster University Medical Centre to obtain their views on helpful practices. Interviews continued until no new items were obtained (ie, saturation point). A total of 370 items were distilled into 82 questionnaire statements on care by a multidisciplinary team and grouped for analysis into 6 domains: communication, quality of care, quality of life, shared decision-making, withdrawal of life-sustaining treatment process, and bereavement care. Respondents were asked to rank how frequently events occurred on a 7-point Likert scale anchored from 1 = never to 7 = always. A score of >5 was considered favorable. The questionnaire was distributed to a pretest sample of perinatal social workers who attended a bereavement workshop at an international conference.RESULTS. The response rate was 48%. Respondents ranked items that pertained to the withdrawal of life-sustaining treatment process highest, indicating that items were done well. Items related to quality of care and bereavement care ranked lowest. Other domains ranked as follows: communication, shared decision-making, and quality of life. Consistency of items within domains was tested by Cronbach's α and split-half testing and were >0.6 for most domains.CONCLUSIONS. Parents' views on important aspects of end-of-life care in the NICU were incorporated into a quality assurance questionnaire. Pretesting assessed the performance of the instrument and the perceptions of social workers on the effectiveness of end-of-life practices. Respondents identified that parents' practical needs were met during the withdrawal process but were not consistently met in regard to the quality of in-hospital and follow-up bereavement care.

Over the last 2 decades, the survival rate of infants born at ≤25 weeks of gestation has increased; however, significant morbidity and disability persist. The commitment for their care gives rise to a variety of complex medical, social, and ethical aspects. Decision-making is a crucial issue that involves the infant, the family, health care providers, and society. In a review of the existing guidelines, we investigated the different approaches in the care of extremely preterm births in various countries. We found that many scientific societies and professional organizations have issued guidelines that address the recommendations for the care of these fetuses/neonates although to varying degrees. In this article we compare different approaches and assess the scientific grounds of the specific recommendations. With current standards, intensive care is generally considered justifiable at ≥25 weeks, compassionate care at ≤22 weeks, and an individual approach at 23 to 24 weeks, consistent with the parents' wishes and the infant's clinical conditions at birth.

OBJECTIVE. Decisions regarding end-of-life care in critically ill newborns in the Netherlands have received considerable criticism from the media and from the public. This might be because of a lack of proper information and knowledge. Our purpose was to provide detailed information about how and when the implementation of end-of-life decisions, which are based on quality-of-life considerations, takes place. METHODS. We reviewed the charts of all infants who died within the first 2 months of life at 2 university hospitals in the Netherlands from January to July 2005 and extracted all relevant information about the end-of-life decisions. We interviewed the responsible neonatologists about the end-of-life decisions and the underlying quality-of-life considerations and about the process of implementation. RESULTS. Of a total of 30 deaths, 28 were attributable to withholding or withdrawing life-sustaining treatment. In 18 of 28 cases, the infant had no chance to survive; in 10 cases, the final decision was based on the poor prognosis of the infant. In 6 patients, 2 successive different end-of-life decisions were made. The arguments that most frequently were used to conclude that quality of life was deemed poor were predicted suffering and predicted inability of verbal and nonverbal communication. Implementation consisted of discontinuation of ventilatory support and alleviation of pain and symptoms. Neuromuscular blockers were added shortly before death in 5 cases to prevent gasping, mostly on parental request. CONCLUSIONS. The majority of deaths were attributable to withholding or withdrawing treatment. In most cases, the newborn had no chance to survive and prolonging of treatment could not be justified. In the remaining cases, withholding or withdrawing treatment was based on quality-of-life considerations, mostly the predicted suffering and predicted inability of verbal and nonverbal communication. Potentially life-shortening medication played a minor role as a cause of death.

OBJECTIVES. A task force was convened to decide whether a donation after cardiac death policy should be implemented at Children's Hospital Boston. As part of this process, we sought to determine the number of potential kidney donation after cardiac death donors in our PICUs. METHODS. We examined all 254 deaths in the Medical/Surgical ICU and the Cardiac ICU from 2002 to 2004 and identified potential donation after cardiac death donors. Inclusion criteria were age ≥3 months, mechanical ventilation, and creatinine ≤1.5 mg/dL. Exclusion criteria were HIV infection, malignancy other than primary brain tumor or nonmelanoma skin cancer, evidence of ongoing infection, death despite resuscitation attempts, and brain death. RESULTS. Twenty-one of the 254 deaths met criteria for brain death, and 233 patients did not. Of the 116 patients >3 months of age for whom life support was withdrawn, 92 were not suitable for kidney donation after cardiac death. Of the 24 children identified as potentially eligible for donation after cardiac death, 14 died within 1 hour of withdrawal of support and could have proceeded with donation after cardiac death. In the other 10 children, donation would have been aborted because of prolonged time to death. CONCLUSIONS. Of all patients who died in our ICUs, 5.5% would have been potential candidates for donation after cardiac death. Assuming the rates of parental consent are similar to that of our heart-beating organ donors (47%), a donation after cardiac death protocol could have potentially yielded 7 additional organ donors and 14 additional kidneys over this 3-year period.

When infants are born at the borderline of viability, doctors and parents have to make tough decisions about whether to institute intensive care or provide only palliative care. Often, these decisions are made in moments of profound emotional turmoil, and parents receive different information from different health professionals. Communication can become garbled. It may be difficult to tell when and whether the patient’s clinical condition has changed enough so that certain choices that had once been permissible become impermissible. In this “Ethics Rounds,” we present a case of triplets born at the borderline of viability. We sought comments from the triplets’ parents, the doctors and ethicist who were caring for the infants, and a bioethicist/neonatologist from another hospital.

The Born-Alive Infants Protection Act (BAIPA), passed by Congress in 2002, has attracted little publicity. Its purposes were, in part, “to repudiate the flawed notion that a child’s entitlement to the protections of the law is dependent on whether that child’s mother or others want him or her.” Understood as antiabortion rhetoric, the bill raised little concern among physicians at the time of legislative hearings and passed in both Houses by overwhelming majorities, hardly suggesting contentious legislation. After its signing into law, the Neonatal Resuscitation Program (NRP) Steering Committee issued an opinion stating that “[BAIPA] should not in any way affect the approach that physicians currently follow with respect to the extremely premature infant.” This interpretation of the law, however, may have been short sighted. In April 2005, the US Department of Health and Human Services (DHHS) brought life to the BAIPA, announcing: “As a matter of law and policy, [DHHS] will investigate all circumstances where individuals and entities are reported to be withholding medical care from an infant born alive in potential violation of federal statutes.” The agency issued instructions to state officials on how the definitional provision within the BAIPA interacts with the Emergency Medical Treatment and Labor Act (EMTALA) and the Child Abuse Prevention and Treatment Act (CAPTA). These interagency memoranda potentially resurrect dormant governmental oversight of newborn-treatment decisions and thus may have influence over normative neonatal practice. Under the BAIPA, the DHHS interprets EMTALA to protect all “born-alive” infants; hospitals and physicians violating regulatory requirements face agency-sanctioned monetary penalties or a “private right of action by any individual harmed as a direct result.” According to its memorandum, the DHHS will investigate allegations of EMTALA violations whenever it finds evidence that a newborn was not provided with at least a medical screening examination under circumstances in which a “prudent layperson observer” could conclude from the infant’s “appearance or behavior” that it was “suffering from an emergency medical condition.” The memorandum fails to clarify which observers qualify as prudent, what infant appearance or behavior is relevant, or what defines an emergency medical condition. Because these evaluative criteria are not constrained by reference to relevant standards of medical care, the agency arguably substitutes a nonprofessional’s presumed sagacious assessment of survivability for reasonable medical judgment. Indeed, under a straightforward reading of the instruction, a family member could conceivably trigger an investigation after observing a relative deliver a 20-week fetus who maintains a heartbeat for an hour before its death. Most physicians would not consider this an emergency medical condition and, rather than perform a screening examination, would provide comfort for the newborn and support for the family. The guideline, however, does not state that professional acumen trumps the layperson’s observations in these instances; thus, physicians are left unclear about whether screening examinations are required for all newborns regardless of a priori, reasoned considerations of survivability. In this context, the NRP Steering Committee opinion states that “at the time of delivery… the medical condition and prognosis of the newly born infant should be assessed. At that point decisions about withholding or discontinuing medical treatment that is considered futile may be considered by… providers in conjunction with the parents acting in the best interest of their child.” However, most pediatricians skilled in screening and resuscitation are not currently called on to perform this function when the gestational age of a nonviable fetus is reasonably certain before delivery. If under the law screening is now required at any gestational age, professional procedure immediately after previable births may need modification. More worrisome, threatened aggressive investigations of alleged EMTALA violations at the soft edges of viability, where futility remains a matter of debate, jeopardize the normative ethical practice of offering discretionary palliative care. The DHHS sent its other instruction to state child protective services agencies responsible for implementing CAPTA regulations; it reiterates the limited situations in which physicians may withhold medical treatment from infants and reemphasizes the local role of “individuals within health care facilities” to notify authorities of suspected infractions. Its real import, however, is insistence on local execution of legal remedies to prevent nontreatment decisions deemed impermissible by the 1984 Baby Doe rules. Because this new directive encourages governmental oversight of treatment decisions involving imperiled newborns, a period of benign regulatory neglect seems to be over. The federal CAPTA rules arguably remove quality-of-life considerations from the decision-making calculus and therefore may conflict with the best-interests paradigm advocated by the American Academy of Pediatrics and NRP. How courts will respond to the DHHS interpretation of EMTALA and CAPTA under the BAIPA remains unclear. Federal courts have yet to authoritatively examine alleged EMTALA violations involving newborn treatment decisions at the limits of viability. The Wisconsin Supreme Court has permitted an EMTALA claim to go to trial where physicians allegedly did not screen or resuscitate a 22-week newborn delivered in an emergency department, and a lower appellate court has relied on CAPTA to hold that parents do not possess the right to choose against resuscitating an extremely premature newborn. The Texas Supreme Court recently granted physicians the paternalistic prerogative to resuscitate imperiled newborns without attention to parental preference under a common law doctrine of “emergent circumstances.” These judicial decisions undermine the ethical discretion parents are typically afforded in decision-making before and after delivery in these morally complex situations. The DHHS interpretation of the BAIPA may encourage jurisdictional creep of these kinds of pronouncements as the agency seeks to expand legal protections for born-alive infants. The US Supreme Court has stated that “courts must presume that a legislature says in a statute what it means and means in a statute what it says there”; thus, judges interpret law by analyzing “concrete statutory language, not by reference to abstract notions of generalized legislative intent.” The BAIPA indiscriminately defines “born alive” to include an infant “at any stage of development… regardless of whether the expulsion or extraction occurs as a result of natural or induced labor, cesarean section, or induced abortion,” and it makes no reference to standards of care or best interests, nor does it specifically protect a parent’s decision-making authority. Under the law’s strict logic, an 18-week miscarried fetus with a detectable heart beat after delivery is entitled to the full protections of the law as determined by “any Act of Congress, or any ruling, regulation, or interpretation of the various administrative bureaus and agencies.” Before concluding that the BAIPA would not affect normative neonatal practice, the NRP Steering Committee should have analyzed the act’s actual statutory language and avoided relying heavily on imprecise legislative intent. The BAIPA’s congressional sponsors did claim that the law “will not mandate medical treatment where none is currently indicated,” but such political rhetoric is often not sufficient to render law innocuous years after separation from its legislative history. Besides, nowhere in the House record does the majority explicitly acknowledge that discretion to decide the fate of imperiled newborns invests in parents, in consultation with physicians; indeed, the bill’s stated purpose was to repudiate that notion. At best, legislators recognized that physicians disagree about the efficacy of resuscitating at the limits of viability, and therefore the current standard of care permits doctors to deem resuscitation a futile endeavor. However, judges may resist characterizing resuscitation as futile, given its poor analytical fit, and substantial public-policy concerns regarding discrimination against future disabled individuals could easily tip a court to preserve incipient, at least, physiologic life under the BAIPA’s all-encompassing definition of born alive.

The current set of federal regulations about how to treat extremely ill, premature, or terminally ill infants

Objective. In canonical modern bioethics, withholding and withdrawing medical interventions for dying patients are considered morally equivalent. However, electing not to administer cardiopulmonary resuscitation (CPR) struck us as easily distinguishable from withdrawing mechanical ventilation. Moreover, withdrawing mechanical ventilation from a moribund infant “feels” different from withdrawing mechanical ventilation from a hemodynamically stable child with a severe neurologic insult. Most previous descriptions of withdrawing and withholding intervention in the neonatal intensive care unit (NICU) have blurred many of these distinctions. We hypothesized that clarifying them would more accurately portray the process of end-of-life decision-making in the NICU.Methods. We reviewed the charts of all newborn infants who had birth weight >400 g and died in our hospital in 1988, 1993, and 1998 and extracted potential ethical issues (resuscitation, withdrawal, withholding, CPR, do-not-resuscitate orders, neurologic prognosis, ethics consult) surrounding each infant's death.Results. Using traditional definitions, roughly half of all deaths in our NICU in 1993 and 1998 were associated with “withholding or withdrawing.” In addition, by 1998, >40% of our NICU deaths could be labeled “active withdrawal,” reflecting the extubation of infants regardless of their physiologic instability. This practice is growing over time. However, 2 important conclusions arise from our more richly elaborated descriptions of death in the NICU. First, when CPR was withheld, it most commonly occurred in the context of moribund infants who were already receiving ventilation and dopamine. Physiologically stable infants who were removed from mechanical ventilation for quality-of-life reasons accounted for only 3% of NICU deaths in 1988, 16% of NICU deaths in 1993, and 13% of NICU deaths in 1998. Moreover, virtually none of these active withdrawals took place in premature infants. Second, by 1998 infants, who died without CPR almost always had mechanical ventilation withdrawn. Finally, the median and average day of death for 100 nonsurvivors who received full intervention did not differ significantly from the 78 nonsurvivors for whom intervention was withheld.Conclusions. In our unit, a greater and greater percentage of doomed infants die without ever receiving chest compressions or epinephrine boluses. Rather, we have adopted a nuanced approach to withdrawing/withholding NICU intervention, providing what we hope is a humane approach to end-of-life decisions for doomed NICU infants. We suggest that ethical descriptions that reflect these nuances, distinguishing between withholding and withdrawing interventions from physiologically moribund infants or physiologically stable infants with morbid neurologic prognoses, provide a more accurate reflection of the circumstances of dying in the NICU.

Discontinuation of life-sustaining interventions often raises ethical concerns. In cases of severe child abuse with poor prognosis for recovery, accused parents may have a conflict of interest regarding medical decision-making for their child, because the outcome of such decisions may impact legal charges filed against them. The recently issued American Academy of Pediatrics guidelines for addressing such cases recommended the appointment of a guardian ad litem for medical decision-making. We present the case of an 8-month-old infant who was abused severely by her father, resulting in a persistent vegetative state. We describe our experience with appointing a guardian ad litem and the ethical issues involved.

The fields of pediatric palliative care (PPC) and pediatric medical ethics (PME) overlap substantially, owing to a variety of historical, cultural, and social factors. This entwined relationship provides opportunities for leveraging the strong communication skills of both sets of providers, as well as the potential for resource sharing and research collaboration. At the same time, the personal and professional relationships between PPC and PME present challenges, including potential conflict with colleagues, perceived or actual bias toward a palliative care perspective in resolving ethical problems, potential delay or underuse of PME services, and a potential undervaluing of the medical expertise required for PPC consultation. We recommend that these challenges be managed by: (1) clearly defining and communicating clinical roles of PPC and PME staff, (2) developing questions that may prompt PPC and PME teams to request consultation from the other service, (3) developing explicit recusal criteria for PPC providers who also provide PME consultation, (4) ensuring that PPC and PME services remain organizationally distinct, and (5) developing well-defined and broad scopes of practice. Overall, the rich relationship between PPC and PME offers substantial opportunities to better serve patients and families facing difficult decisions.

Parental requests for gastrostomies, tracheostomies, or assisted ventilation in children with profound disabilities raise ethical concerns about children’s interests, parental decision-making, and health care costs. The underlying concern for many relates to the perceived value of these children. Clinicians should make efforts to appreciate the family’s perspective regarding children with profound disabilities who require respiratory and nutritional medical support. Finding opportunities to learn about the family members’ lives outside of the health care setting may facilitate a deeper understanding of what it means to live with a child who has profound disabilities. In conversations with families, referring to interventions as futile and conditions as lethal will obscure the value-based nature of these decisions. Respiratory and nutritional interventions are not clearly against the interests of most children. Even for children with a limited life span, life-sustaining interventions may be important for the child and family. Health care costs are a serious societal issue; however, the costs associated with profound disabilities are not the most significant contributor. Societal decisions not to provide life-sustaining health care to children with profound disabilities would require a public process. Clinicians may have personal views regarding decisions for their own family or for their vision for society. However, clinicians have professional obligations to families who have different values. It is important to present balanced information and support parental decision-making so parents may decide to forgo or use life-sustaining interventions according to their values and goals.

BACKGROUND: Over 96 000 patients await kidney transplantation in the United States, and 35 000 more are wait-listed annually. The demand for donor kidneys far outweighs supply, resulting in significant waiting list morbidity and mortality. We sought to identify potential kidney donors among newborns because en bloc kidney transplantation donation after circulatory determination of death (DCDD) may broaden the donor pool. METHODS: We reviewed discharges from our 84-bed NICU between November 2002 and October 2012 and identified all deaths. The mode of death among potential organ donors (weight ≥1.8 kg) was recorded. Patients undergoing withdrawal of life support were further evaluated for DCDD potential. After excluding patients with medical contraindications, those with warm ischemic time (WIT) less than 120 minutes were characterized as potential kidney donors. RESULTS: There were 11 201 discharges. Of 609 deaths, 359 patients weighed ≥1.8 kg and 159 died after planned withdrawal of life support. The exact time of withdrawal could not be determined for 2 patients, and 100 had at least 1 exclusion criterion. Of the remaining patients, 42 to 57 infants were potential en bloc kidney donors depending on acceptance threshold for WIT. Applying a 40% to 70% consent rate range would yield 1.7 to 4 newborn DCDD donors per year. CONCLUSIONS: A neonatal DCDD kidney program at our institution could provide 2 to 4 paired kidneys for en bloc transplantation each year. Implementing a DCDD kidney donation program in NICUs could add a new source of donors and increase the number of kidneys available for transplantation.

Advances in medical technology have led to dilemmas in initiation and withdrawal of intensive care of newborn infants with a very poor prognosis. Physicians and parents together must make difficult decisions guided by their understanding of the child's best interest. The foundation for these decisions consists of several key elements: (1) direct and open communication between the health care team and the parents of the child with regard to the medical status, prognosis, and treatment options; (2) inclusion of the parents as active participants in the decision process; (3) continuation of comfort care even when intensive care is not being provided; and (4) treatment decisions that are guided primarily by the best interest of the child.

OBJECTIVES: To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and redirection of intensive care, including limitation of care and withdrawal of life-sustaining treatment); and to assess the parental role in the decision-making process given that the majority of the population is religious. METHODS: All neonates who died between 2000 and 2009 were identified. The causes and circumstances of death were abstracted from the medical records. Trends in end-of-life decisions were compared between 2 time periods: 2000–2004 versus 2005–2009. RESULTS: Overall, 239 neonates died. The leading cause of death in both study periods was prematurity and its complications (76%). Among term infants, the leading cause of death was congenital anomalies (48%). Fifty-six percent of the infants received maximal intensive care; 28% had redirection of intensive care, of whom 10% had withdrawal of life-sustaining treatment; and 16% had primary nonintervention care. Over the years, maximal intensive care decreased from 65% to 46% (P < .02), whereas redirection of care increased from 19.2% to 37.5% (P < .0005). An active parental role in the end-of-life decision process increased from 38% to 84%. CONCLUSIONS: Even among religious families of extremely sick neonates, redirection of care is a feasible treatment option, suggesting that apart from survival, quality-of-life considerations emerge as an important factor in the decision-making process for the infant, parents, and caregivers.

In this “Ethics Rounds,” physicians must decide how far to go in respecting the wishes of a Saudi Arabian man whose infant is dying in the PICU. The man requests an approach to end-of-life decisions that is deeply rooted in both Saudi culture and the tenets of Islamic bioethics but at odds with prevailing US law and bioethics. We asked 3 physicians with expertise in cross-cultural issues to comment on the issues raised by this case. Dr Aasim Padela is an emergency medicine physician and a fellow in the Program on Medicine & Religion at The University of Chicago. Dr Sadath Sayeed is a neonatologist at Boston Children’s Hospital and on faculty in the Division of Medical Ethics at Harvard Medical School. Dr Maryam Naim is a pediatric intensivist at the Children’s Hospital of Philadelphia. ### Case Representation A 2-month-old boy was found unresponsive in his crib after his mother heard him choke shortly after feeding. His parents drove him to the emergency department, where he was apneic and pulseless. He had return of spontaneous circulation after 30 minutes of cardiopulmonary resuscitation and was transferred to the PICU. On physical examination, the infant has intermittent respiratory effort over the ventilator, no withdrawal from painful stimuli, and no pupillary response to light. Over the next few days, his neurologic examination remained limited to intermittent seizures and irregular respiratory effort. There are no other signs of brainstem function on serial examination. The parents are young and had recently emigrated from Saudi Arabia. The mother is wearing a full black burqa exposing only her face. She speaks no English. The father is wearing a tee shirt and jeans and speaks fluent English. A meeting is scheduled with both parents, the neurologists, social workers, PICU team, and an Arabic interpreter to discuss the prognosis and plans. Before … Address correspondence to John D. Lantos, MD, Children’s Mercy Hospital, 2401 Gillham Rd, Kansas City, MO 64105. E-mail: jlantos{at}cmh.edu

Abusive head trauma is a significant and tragic cause of morbidity and mortality in infants and its victims often have a poor prognosis. With such high rates of morbidity and mortality, health care providers and parents are often faced with the decision to continue or discontinue life support for an affected child. Sadly, however, this decision becomes complicated when parents are accused of causing the victim-child's current state. In this situation, if life support is withdrawn, criminal charges for the accused may escalate from assault to murder. This escalation of legal charges creates a conflict of interest for accused parents. As a result, parents have a strong incentive to avoid murder charges by using their parental decision-making rights to keep the child alive, even when treatment is deemed futile or inhumane. In this article, we discuss the legal challenges health care providers may face when parents place their interest above their child’s. We also propose solutions that give greater deference to the rights and interest of these critically ill children while still preserving protected parental rights.

OBJECTIVE: We surveyed US neonatologists and high-risk obstetricians about preferences for resuscitation in ethically difficult situations to determine whether (1) their responses adhered to traditional ethical principles of best interests and patient autonomy and (2) physician specialty seemed to influence the response. METHODS: In an electronic survey, we presented 8 vignettes with varying prognoses for survival and long-term outcome. Respondents were provided outcome data for mortality and morbidity in each vignette. We asked whether resuscitation was in the patient's best interest and whether the physician would accede to requests for nonresuscitation. RESULTS: We analyzed surveys for 587 neonatologists and 108 high-risk obstetricians (15% overall response rate, 75% of web site visitors). There were no statistically significant differences in responses between the 2 physician subspecialty groups. As expected, in most cases there were inverse relationships between valuation of best interest and deferred resuscitation at the family's request. For example, for the oldest patient (an 80-year-old), 9.9% found resuscitation to be in the patient's best interest and 94.3% would allow nonresuscitation; for a 2-month-old, 93.9% found resuscitation to be in the patient's best interest and 24.5% would allow nonresuscitation. However, this pattern was not observed in the 2 newborn cases, in which resuscitation and nonresuscitation were both acceptable. In the triage scenario, the 7-year-old with cerebral palsy and acute trauma was consistently resuscitated first despite others having equivalent or better short- and long-term prognoses. CONCLUSIONS: On the basis of our results, physicians' decisions to resuscitate seem to be context-specific, rather than based on prognosis or consistent application of best-interest or autonomy principles. Despite their different professional perspectives, neonatologists and high-risk obstetricians seemed to converge on these judgments.

OBJECTIVE: Our purpose was to examine alterations in end-of-life support in a multiinstitutional sample of PICUs. METHODS: This was a retrospective, descriptive study. Variables collected included end-of-life support category, race, length of stay, operative status, reason for admission, and Pediatric Index of Mortality 2 score, as well as the number of ICU beds and the presence of trainees. RESULTS: There were 1745 deaths at 35 institutions between January 1, 2004, and September 30, 2005. Of those, 1263 had complete data and were analyzed. The end-of-life support category distribution was as follows: brain death, 296 (23%); do not resuscitate, 205 (16%); limitation of support, 36 (3%); withdrawal of support, 579 (46%); no limitation, 124 (10%); no advance directives, 23 (2%). For further analyses, end-of-life support categories were grouped as limitation (ie, do not resuscitate, limitation of support, or withdrawal of support) versus no limitation (ie, no limitation or no advance directive). Brain death was not included in further analyses. The majority of deaths were in the limitation group (n = 820 [85%]), and 12 (40%) of 30 institutions had 100% of deaths in this group. There were significant differences between institutions (P < .001). Decisions for limitation were seen less frequently in the black race (112 [76%] of 147 deaths; P = .037) and in institutions with no trainees (56 [69%] of 81 deaths; P < .001). CONCLUSIONS: Decisions to limit support are common. Black race and an absence of trainees are associated with decreased frequency of limitation decisions.

There is broad consensus that withholding or withdrawing medical interventions is morally permissible when requested by competent patients or, in the case of patients without decision-making capacity, when the interventions no longer confer a benefit to the patient or when the burdens associated with the interventions outweigh the benefits received. The withdrawal or withholding of measures such as attempted resuscitation, ventilators, and critical care medications is common in the terminal care of adults and children. In the case of adults, a consensus has emerged in law and ethics that the medical administration of fluid and nutrition is not fundamentally different from other medical interventions such as use of ventilators; therefore, it can be forgone or withdrawn when a competent adult or legally authorized surrogate requests withdrawal or when the intervention no longer provides a net benefit to the patient. In pediatrics, forgoing or withdrawing medically administered fluids and nutrition has been more controversial because of the inability of children to make autonomous decisions and the emotional power of feeding as a basic element of the care of children. This statement reviews the medical, ethical, and legal issues relevant to the withholding or withdrawing of medically provided fluids and nutrition in children. The American Academy of Pediatrics concludes that the withdrawal of medically administered fluids and nutrition for pediatric patients is ethically acceptable in limited circumstances. Ethics consultation is strongly recommended when particularly difficult or controversial decisions are being considered.

OBJECTIVE. To assess neonatologists' attitudes and practices regarding treatment of extremely preterm infants in the delivery room, particularly in response to parental wishes.STUDY DESIGN. Cross-sectional survey of all neonatologists in Sweden registered with the Swedish Pediatric Society.RESULTS. The response rate was 71% (88 of 124 neonatologists). At 24[1/7] to 24[6/7] weeks of gestation, 68% of neonatologists considered treatment clearly beneficial; at 25[1/7] to 25[6/7] weeks of gestation, 93% considered it clearly beneficial. When respondents consider treatment clearly beneficial, 97% reported that they would resuscitate in the delivery room despite parental requests to withhold treatment. At or below 23[0/7] weeks of gestation, 94% of neonatologists considered treatment futile. Nineteen percent reported that they would provide what they consider futile treatment at parental request. When respondents consider treatment to be of uncertain benefit, 99% reported that they would resuscitate when parents request it, 99% reported that they would resuscitate when parents are unsure, and 25% reported that they would follow parental requests to withhold treatment.CONCLUSION. Although neonatologists' attitudes and practices varied, respondents to our survey in general envisioned little parental role in delivery room decision-making for extremely preterm infants.

This publication contains the pediatric and neonatal sections of the 2005 International Consensus on Cardiopulmonary Resuscitation and Emergency Cardiovascular Care Science With Treatment Recommendations (COSTR). The consensus process that produced this document was sponsored by the International Liaison Committee on Resuscitation (ILCOR). ILCOR was formed in 1993 and consists of representatives of resuscitation councils from all over the world. Its mission is to identify and review international science and knowledge relevant to cardiopulmonary resuscitation (CPR) and emergency cardiovascular care (ECC) and to generate consensus on treatment recommendations. ECC includes all responses necessary to treat life-threatening cardiovascular and respiratory events.The COSTR document presents international consensus statements on the science of resuscitation. ILCOR member organizations are each publishing resuscitation guidelines that are consistent with the science in this consensus document, but they also take into consideration geographic, economic, and system differences in practice and the regional availability of medical devices and drugs. The American Heart Association (AHA) pediatric and the American Academy of Pediatrics/AHA neonatal sections of the resuscitation guidelines are reprinted in this issue of Pediatrics (see pages e978–e988).The 2005 evidence evaluation process began shortly after publication of the 2000 International Guidelines for CPR and ECC. The process included topic identification, expert topic review, discussion and debate at 6 international meetings, further review, and debate within ILCOR member organizations and ultimate approval by the member organizations, an Editorial Board, and peer reviewers. The complete COSTR document was published simultaneously in Circulation (International Liaison Committee on Resuscitation. 2005 International Consensus on Cardiopulmonary Resuscitation and Emergency Cardiovascular Care Science With Treatment Recommendations. Circulation. 2005;112(suppl):73–90) and Resuscitation (International Liaison Committee on Resuscitation. 2005 International Consensus Conference on Cardiopulmonary Resuscitation and Emergency Cardiovascular Care Science With Treatment Recommendations. Resuscitation. 2005;67:271–291).Readers are encouraged to review the 2005 COSTR document in its entirety. It can be accessed through the CPR and ECC link at the AHA Web site: www.americanheart.org. The complete publication represents the largest evaluation of resuscitation literature ever published and contains electronic links to more detailed information about the international collaborative process.To organize the evidence evaluation, ILCOR representatives established 6 task forces: basic life support, advanced life support, acute coronary syndromes, pediatric life support, neonatal life support, and an interdisciplinary task force to consider overlapping topics such as educational issues. The AHA established additional task forces on stroke and, in collaboration with the American Red Cross, a task force on first aid. Each task force identified topics requiring evaluation and appointed international experts to review them. A detailed worksheet template was created to help the experts document their literature review, evaluate studies, determine levels of evidence, develop treatment recommendations, and disclose conflicts of interest. Two evidence evaluation experts reviewed all worksheets and assisted the worksheet reviewers to ensure that the worksheets met a consistently high standard.A total of 281 experts completed 403 worksheets on 275 topics, reviewing more than 22000 published studies. In December 2004 the evidence review and summary portions of the evidence evaluation worksheets, with worksheet author conflict of interest statements, were posted on the Internet at www.C2005.org, where readers can continue to access them. Journal advertisements and e-mails invited public comment.Two hundred forty-nine worksheet authors (141 from the United States and 108 from 17 other countries) and additional invited experts and reviewers attended the 2005 International Consensus Conference for presentation, discussion, and debate of the evidence. All 380 participants at the conference received electronic copies of the worksheets. Internet access was available to all conference participants during the conference to facilitate real-time verification of the literature. Expert reviewers presented topics in plenary, concurrent, and poster conference sessions with strict adherence to a novel and rigorous conflict of interest process. Presenters and participants then debated the evidence, conclusions, and draft summary statements. Wording of science statements and treatment recommendations was refined after further review by ILCOR member organizations and the international editorial board. This format ensured that the final document represented a truly international consensus process.The COSTR manuscript was ultimately approved by all ILCOR member organizations and by an international editorial board. The AHA Science Advisory and Coordinating Committee and the editor of Circulation obtained peer reviews of this document before it was accepted for publication.The most important changes in recommendations for pediatric resuscitation since the last ILCOR review in 2000 include: Increased emphasis on performing high quality CPR: “Push hard, push fast, minimize interruptions of chest compression; allow full chest recoil, and don't provide excessive ventilation” Recommended chest compression-ventilation ratio: For lone rescuers with victims of all ages: 30:2For health care providers performing 2-rescuer CPR for infants and children: 15:2 (except 3:1 for neonates)Either a 2- or 1-hand technique is acceptable for chest compressions in childrenUse of 1 shock followed by immediate CPR is recommended for each defibrillation attempt, instead of 3 stacked shocksBiphasic shocks with an automated external defibrillator (AED) are acceptable for children 1 year of age. Attenuated shocks using child cables or activation of a key or switch are recommended in children Some of the most important changes in recommendations for neonatal resuscitation since the last ILCOR review in 2000 include less emphasis on using 100% oxygen when initiating resuscitation, de-emphasis of the need for routine intrapartum oropharyngeal and nasopharyngeal suctioning for infants born to mothers with meconium staining of amniotic fluid, proven value of occlusive wrapping of very low birth weight infants The scientific evidence supporting these recommendations is summarized in the neonatal document (see pages e978–e988).