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Epigenetic clocks based on DNA methylation (DNAm) can accurately predict chronological age and are thought to capture biological aging. A variety of epigenetic clocks have been developed for different tissue types and age ranges, but none have focused on postnatal age prediction for preterm infants. Epigenetic estimators of biological age might be especially informative in epidemiologic studies of neonates since DNAm is highly dynamic during the neonatal period and this is a key developmental window. Additionally, markers of biological aging could be particularly important for those born preterm since they are at heightened risk of developmental impairments. We aimed to fill this gap by developing epigenetic clocks for neonatal aging in preterm infants. As part of the Neonatal Neurobehavior and Outcomes in Very Preterm Infants (NOVI) study, buccal cells were collected at NICU discharge to profile DNAm levels in 542 very preterm infants. We applied elastic net regression to identify four epigenetic clocks (NEOage Clocks) predictive of post-menstrual and postnatal age, compatible with the Illumina EPIC and 450K arrays. We observed high correlations between predicted and reported ages (0.93 – 0.94) with root mean squared errors (1.28 - 1.63 weeks). Epigenetic estimators of neonatal aging in preterm infants can be useful tools to evaluate biological maturity and associations with neonatal and long-term morbidities.

Background Preterm birth places infants at higher risk of adverse long-term behavioral and cognitive outcomes. Combining biobehavioral measures and molecular biomarkers may improve tools to predict the risk of long-term developmental delays. Methods The Neonatal Neurobehavior and Outcomes in Very Preterm Infants study was conducted at nine neonatal intensive care units between April 2014 and May 2016. Cries were recorded and buccal swabs collected during the neurobehavioral exam. Cry episodes were extracted and analyzed using a computer system and the data were summarized using factor analysis. Genomic DNA was extracted from buccal swabs, quantified using the Qubit Fluorometer, and aliquoted into standardized concentrations. DNA methylation was measured with the Illumina MethylationEPIC BeadArray, and an epigenome-wide association study was performed using cry factors (n = 335). Results Eighteen CpGs were associated with the cry factors at genome-wide significance (α = 7.08E - 09). Two CpG sites, one intergenic and one linked to gene TCF3 (important for B and T lymphocyte development), were associated with acoustic measures of cry energy. Increased methylation of TCF3 was associated with a lower energy-related cry factor. We also found that pitch (F0) and hyperpitch (F0 > 1 kHz) were associated with DNA methylation variability at 16 CpG sites. Conclusions Acoustic cry characteristics are related to variation in DNA methylation in preterm infants. Impact Preterm birth is a major public health problem and its long-term impact on health is not well understood.Cry acoustics, related to prematurity, has been linked to a variety of medical conditions.Biobehavioral measures and molecular biomarkers can improve prediction tools for long-term developmental risks of preterm birth.Variation in epigenetic modulation in preterm infants provides a potential link between preterm birth and unfavorable developmental outcomes.

Trauma-informed care responds to our current understanding of the ways in which people's traumatic life experiences influence both their health and their interactions with the health care system. Many ethics consults arise because those past traumatic life experiences are not recognized and addressed. In this paper, we present a NICU case that led to an ethics consultation about end-of-life decisions for a dying baby. We illustrate the ways in which a trauma-informed approach helped doctors, nurses and ethics consultants to better understand and care for the mother and family.

Family-centered care (FCC) has become the normative practice in Neonatal ICUs across North America. Over the past 25 years, it has grown to impact clinician-parent collaborations broadly within children's hospitals as well as in the NICU and shaped their very culture. In the current COVID-19 pandemic, the gains made over the past decades have been challenged by "visitor" policies that have been implemented, making it difficult in many instances for more than one parent to be present and truly incorporated as members of their baby's team. Difficult access, interrupted bonding, and confusing messaging and information about what to expect for their newborn can still cause them stress. Similarly, NICU staff have experienced moral distress. In this perspective piece, we review those characteristics of FCC that have been disrupted or lost, and the many facets of rebuilding that are presently required.

BACKGROUND Psychosocial adversity escalates medical risk for poor outcomes in infants born

Background Prenatal risk factors are related to poor health and developmental outcomes for infants, potentially via epigenetic mechanisms. We tested associations between person-centered prenatal risk profiles, cumulative prenatal risk models, and epigenome-wide DNA methylation (DNAm) in very preterm neonates. Methods We studied 542 infants from a multi-center study of infants born Results We identified three latent profiles of women: a group with few risk factors (61%) and groups with elevated physical (26%) and psychological (13%) risk factors. Neonates born to women in higher risk subgroups had differential DNAm at 2 CpG sites. Higher cumulative prenatal risk was associated with methylation at 15 CpG sites, 12 of which were located in genes previously linked to physical and mental health and neurodevelopment. Conclusion We observed associations between prenatal risk factors and DNAm in very preterm infants using both person-centered and cumulative risk approaches. Epigenetics offers a potential biological indicator of prenatal risk exposure.

Background: Infants born

Background: “Simon’s Law” (SL) is legislation that requires explicit parental consent prior to placing an inpatient do not resuscitate (DNR) order for an unemancipated minor. Such legislation was first proposed in Missouri in December 2014. In 2017, Kansas was the first state to pass a version of the law (Sub SB85), followed by Missouri in 2019 (SB 406). Proponents argued that Simon’s Law would protect parental decision-making rights and prevent unilateral DNR orders. Opponents noted that open communication prior to placing a DNR …

Doctors often focus on the science of medicine involved in matters of reproductive health and childbirth, at times to the exclusion of the psychosocial and spiritual dimensions of health. Pregnancy and childbirth are clothed in mystery when it comes to the question of why a pregnancy goes well or is fraught with complications. And while explanations may abound in this age of increasing genetic understanding, the meaning attached to these matters is beyond the scope of medicine alone-especially when the newborn's very survival is in question. Perinatal palliative care can bring solace to such troubling realities.

Perinatal palliative care has grown out of both an historical necessity in attending to babies in the NICU that face difficult odds of survival, the increasing technology that may avail life-extending, yet technology-dependent, care, and the growth of fetal diagnostic and treatment centers. This review looks ta the history and ethical rationale for making available services from Pediatric and Perinatal Palliative Care to families in the prenatal and postnatal periods caring for a loved one with life-limiting circumstances.

Background Infants born very preterm are more likely to experience neonatal morbidities compared to their term peers. Variations in DNA methylation (DNAm) associated with these morbidities may yield novel information about the processes impacted by these morbidities. Methods This study included 532 infants born Results We identified ten differentially methylated CpGs (α Bonferroni-adjusted for 706,278 tests) that were associated with increasing neonatal morbidity risk scores at three intergenic regions and at HPS4, SRRD, FGFR1OP, TNS3, TMEM266, LRRC3B, ZNF780A, and TENM2. These mostly followed dose–response patterns, for 8 CpGs increasing DNAm associated with increased numbers of morbidities, while for 2 CpGs the risk score was associated with decreasing DNAm. BPD was the most substantial contributor to differential methylation. We also identified seven potential DMRs and over-representation of genes involved in Wnt signaling; however, these results were not significant after Bonferroni adjustment for multiple testing. Conclusions Neonatal DNAm, within genes involved in fibroblast growth factor activities, cellular invasion and migration, and neuronal signaling and development, are sensitive to the neonatal health complications of prematurity. We hypothesize that these epigenetic features may be representative of an integrated marker of neonatal health and development and are promising candidates to integrate with clinical information for studying developmental impairments in childhood.

* Abbreviation: COVID-19 — : coronavirus disease 2019 Imagine the following situation: A 25-year-old is intubated in the emergency department for coronavirus disease 2019 (COVID-19)–related acute respiratory distress syndrome. The adult ICU is full. The nearby PICU has many available beds and staff. The pediatric intensivist and their administrators must decide how to respond. Do ethical considerations permit, require, or forbid extending PICU care to this adult patient? Two features of the COVID-19 pandemic make situations like this increasingly likely. First, there is significant variation in disease incidence. Adults are at much higher risk of serious COVID-19–related illness requiring ICU care than are children.1,2 Children generally have had fewer infections and milder disease.3,4 Second, there is significant variation in available capacity. According to the Society of Critical Care Medicine, there are only 68 558 adult ICU beds, 5137 PICU beds, 22 901 NICU beds, 25 157 step-down beds, and 1183 burn beds in the United States today.5 In a moderate or severe outbreak, with tens of thousands of adults requiring ICU care,1 the need will quickly outstrip available resources.6 Children’s hospitals, by contrast, likely will have surplus capacity. We are at the end of the typical influenza and respiratory syncytial virus seasons. We have canceled nearly all elective surgery nationwide, easing demand for postoperative care in the PICU. This has left … Address correspondence to Ian D. Wolfe, PhD, RN, CCRN, Children’s Mercy Bioethics Center, 2401 Gillham Rd, Kansas City, MO 64108. E-mail: wolfe370{at}umn.edu

With heightened awareness of long-term neurocognitive effects of pain and stress in the neonatal population, increased focus has been placed on pain assessment as well as potential effects of routinely administered analgesics/sedatives in our neonatal intensive care units (NICUs). Our goal was to review recently published literature on current pain assessment practices, novel approaches to management, pharmacogenomics in the neonate, and risks of commonly used medications. There is an increasing trend in the administration of analgesics and sedatives in NICUs, despite reports of the negative effects these medications may have on neonatal brain development. As in the adult world, studies are finding that pharmacogenomics has the potential to play a significant role in adequate pain control and sedation in the individual neonatal patient. Due to increased reports of adverse effects of commonly used medications such as morphine and midazolam, new pharmacologic agents are being evaluated in the neonatal population as possibly safer alternatives. There have been significant advances in our knowledge of pain and sedation in the neonate, ranging from a better understanding of long-term neurocognitive effects of pain in neonatal brain development to the role of pharmacogenomics in the NICU setting. These developments have opened the door for continued learning and investigation into the ideal management of neonatal pain and sedation.

The perinatal world is unique in its dutiful consideration of two patients along the lines of decision-making and clinical management - the fetus and the pregnant woman. The potentiality of the fetus-newborn is intertwined with the absolute considerations for the woman as autonomous patient. From prenatal diagnostics, which may be quite extensive, to potential interventions prenatally, postnatal resuscitation, and neonatal management, the fetus and newborn may be anticipated to survive with or without special needs and technology, to have a questionable or guarded prognosis, or to live only minutes to hours. This review will address the ethical ramifications for prenatal diagnostics, parental values and goals clarification, birth plans, the fluidity of decision-making over time, and the potential role of prenatal and postnatal palliative care support.

Pain management in the neonatal ICU remains challenging for many clinicians and in many complex care circumstances. The authors review general pain management principles and address the use of pain scales, non-pharmacologic management, and various agents that may be useful in general neonatal practice, procedurally, or at the end of life. Chronic pain and neonatal abstinence are also noted.

Prenatal consults are full of uncertainty. But, what are physicians contributing to this, and what is parents understanding of the intricacies of the complex decisions we present to them? Might the way we actively or passively guide parents affect how they make decisions in the complex world of fetal health consultations? For instance, how does "recommending" versus "not recommending" impact how parents view their choices? Reviewing the literature, there is a paucity of data on this topic. There are studies detailing experience but not of how guidance affects decision-making. We review some of this literature and discuss concepts relevant to this observation. We hypothesize that passive or active guidance by fetal health consultation members influences the moral deliberation and ethical decision-making of parents in different ways and propose a possible research idea.

1. Gangaram Akangire, MD* 2. Brian Carter, MD*,† 1. *Division of Neonatology, Children’s Mercy Hospital-Kansas City, MO 2. †Department of Pediatrics, University of Missouri-Kansas City, Kansas City, MO 1. Clinicians should understand the outcome of birth-related extracranial and intracranial injuries and the most appropriate time of intervention. 2. Clinicians should understand the outcome of long bone fractures that occur during the birth process. 3. Clinicians should understand when to consult with neurosurgery when faced with a depressed skull fracture after a birth and be familiar with clinical outcomes. 4. Clinicians should understand the outcome of facial nerve injury and brachial plexus injury resulting from birth trauma. 5. Clinicians need to understand the medicolegal implications of birth injuries and the importance of careful documentation. After completing this article, readers should be able to: 1. Discuss delivery conditions that increase the risk of birth injuries. 2. List favorable and unfavorable outcomes following birth injuries. 3. Describe common birth injuries and delineate current evaluation and management from the general pediatric practitioner’s perspective. 4. Focus on emergency situations that involve traumatic bleeding; nerve injury; and fractures of the skull, clavicles, and long bones that require urgent assessment and intervention. Birth injury is defined as the structural destruction or functional deterioration of the neonate’s body due to a traumatic event at birth. Some of these injuries are avoidable when appropriate care is available and others are part of the delivery process that can occur even when clinicians practice extreme caution. Amniocentesis and intrauterine transfusions can cause injuries before birth, and these and any injuries that occur following neonatal resuscitation procedures are not considered birth injuries. However, injuries occurring from fetal scalp electrodes and intrapartum heart rate monitoring are considered birth injuries. Over the past 20 years, the number of deaths due to birth injuries has declined such that they no longer are …

BACKGROUND: Among preterm infants, neurodevelopmental outcomes are influenced by both medical and sociodemographic factors. Less is known about the impact on these factors on neonatal neurobehavioral patterns. OBJECTIVE: To determine associations between demographic, psychosocial and medical risk factors and neonatal neurobehavior. METHODS: Multi-center observational study of infants born

Background & ObjectivesNeonatal neurobehavioral performance measures, such as the NICU Network Neurobehavioral Scale (NNNS), have been developed to assess the neurobehavioral characteristics of infants and provide insights into future developmental trajectories. The identification of molecular biomarkers of very early life neurobehavioral experiences could lead to better predictions of the long-term developmental outcomes of high-risk infants including preterm infants. To this end, we aimed to examine whether variability in DNA methylation (DNAm) or epigenetic age from surrogate tissues are associated with NNNS profiles in a cohort of infants born less than 30 weeks postmenstrual age (PMA).MethodsThis study was performed within the Neonatal Neurobehavior and Outcomes in Very Preterm Infants (NOVI) Study and included those infants with complete NNNS assessment data and DNAm measured from buccal cells, collected at near term-equivalent age using the Illumina EPIC array (N=536). We tested whether epigenetic age and age acceleration differed between infants based on their NNNS profile classifications. Then we performed an epigenome-wide association study, to test whether DNAm at individual epigenetic loci varied between these NNNS profile groupings. Models were adjusted for recruitment site, infant sex, postmenstrual age, and estimated tissue heterogeneity.ResultsWe found that infants with an optimal NNNS profile had slightly older epigenetic age than other NOVI infants (β1 = 0.201, p-value = 0.026), and that infants with an atypical NNNS profile had differential methylation at 29 CpG sites (FDR < 10%). The genes annotated to these differentially methylated CpGs included PLA2G4E, TRIM9, GRIK3, and MACROD2, which have previously been associated with neurological structure and function, or with neurobehavioral disorders.ConclusionsGreater epigenetic age is associated with optimal NNNS responses while altered DNAm of multiple genes are associated with an atypical neurobehavioral profile at near-term equivalent age. These findings build upon the existing evidence that epigenetic variations in buccal cells may serve as markers of neonatal neurobehavior and might facilitate early identification of children at risk for abnormal developmental outcome.

Critically ill newborns receiving intensive and complex care may be subject to medical errors and adverse events. Like most physicians, neonatologists do not feel comfortable disclosing their errors and may need assistance in learning how to do so. Understanding useful models of error disclosure, and communication training, will likely be beneficial.

Outcomes of neonatal intensive care unit (NICU) graduates have been categorized by rates of neurodevelopmental impairment at 2 years old. Although useful as metrics for research, these early childhood assessments may underestimate or overestimate later functional capabilities. Often overlooked are less severe but more prevalent neurobehavioral dysfunctions seen later in childhood, and chronic health concerns that may impact the child’s quality of life (QoL). Comprehensive NICU follow-up should include measures of less severe cognitive/learning delays, physical/mental well-being, and the promotion of resilience in children and families. Studies are needed to identify QoL measures that will optimize children’s assessments and outcomes.

In most children’s hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of these mechanisms are closer in spirit to the goals of the pioneers of clinical ethics than is the mechanism of a formal ethics consultation. To show how this is true, we first review the history of collaboration between philosophers and physicians about clinical dilemmas. Then, as a case-study, we describe the different venues that have developed at one children’s hospital to address ethical issues. At our hospital, there are nine different venues in which ethical issues are regularly and explicitly addressed. They are (1) ethics committee meetings, (2) Nursing Ethics Forum, (3) ethics Brown Bag workshops, (4) PICU ethics rounds, (5) Grand Rounds, (6) NICU Comprehensive Care Rounds, (7) Palliative Care Team (PaCT) case conferences, (8) multidisciplinary consults in Fetal Health Center, and (9) ethics consultations. In our hospital, ethics consults account for only a tiny percentage of ethics discussions. We suspect that most hospitals have multiple and varied venues for ethics discussions. We hope this case study will stimulate research in other hospitals analyzing the various ways in which ethicists and ethics committees can build an ethical environment in hospitals. Such research might suggest that ethicists need to develop a different set of “core competencies” than the ones that are needed to do ethics consultations. Instead, they should focus on their skills in creating multiple “moral spaces” in which regular and ongoing discussion of ethical issues would take place. A successful ethicist would empower everyone in the hospital to speak up about the values that they believe are central to respectful, collaborative practice and patient care. Such a role is closer to what the first hospital philosophers set out to do than in the role of the typical hospital ethics consultant today.

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.

Background Studies have shown rates of life-sustaining treatments for periviable newborns vary by center, centers' differing periviability approaches affect trainees' views, and formal communication training for neonatology fellows is uncommon. Parents of imperiled newborns report unmet emotional and spiritual needs. This study sought to understand how fellows learn to support parents and their periviable newborns through exposure to institutional clinical approaches and by formal curriculum. Methods All the U.S. neonatology fellowship program directors were invited to complete an online anonymous survey. Data were analyzed with descriptive statistics. Results In this study, 56 of 98 directors (57%) responded. Training centers differed in delivery room options offered and recommended for periviable newborns. Providing parents written information and neonatology and obstetrics co-counseling were uncommon. Directors reported weaknesses in training fellows to support parents' spiritual and emotional needs, and Conclusion Training programs exposed fellows to different periviability care approaches, identified weaknesses in teaching support provision for parents' needs, and appeared to miss opportunities for clinical modeling of counseling and comfort care provision.

Bioethical decision-making in pediatrics diverges from similar decisions in other medical domains because the young child is not an autonomous decision-maker, while the teen is developing—and should be encouraged to develop—autonomy and decisional capacity. Thus the balance between autonomy and beneficence is fundamentally different in pediatrics than in adult medicine. While ethical dilemmas that reflect these fundamental issues are common, many pediatric physician and nursing training programs do not delve into the issues or offer specific training about how to deal with borderline cases. To meet this need, the Children's Mercy Bioethics Center in Kansas City, Missouri, created a program specifically dedicated to serving practicing, experienced pediatric health professionals. Our students come from various professional disciplines: they are doctors, nurses, social workers, chaplains, lawyers, psychologists, counselors, and hospital administrators practicing in pediatrics.

Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life, facilitate informed decision-making, and assist in care coordination between clinicians and across sites of care. Core commitments of PPC-PHC include being patient centered and family engaged; respecting and partnering with patients and families; pursuing care that is high quality, readily accessible, and equitable; providing care across the age spectrum and life span, integrated into the continuum of care; ensuring that all clinicians can provide basic palliative care and consult PPC-PHC specialists in a timely manner; and improving care through research and quality improvement efforts. PPC-PHC guidelines and recommendations include ensuring that all large health care organizations serving children with life-threatening conditions have dedicated interdisciplinary PPC-PHC teams, which should develop collaborative relationships between hospital- and community-based teams; that PPC-PHC be provided as integrated multimodal care and practiced as a cornerstone of patient safety and quality for patients with life-threatening conditions; that PPC-PHC teams should facilitate clear, compassionate, and forthright discussions about medical issues and the goals of care and support families, siblings, and health care staff; that PPC-PHC be part of all pediatric education and training curricula, be an active area of research and quality improvement, and exemplify the highest ethical standards; and that PPC-PHC services be supported by financial and regulatory arrangements to ensure access to high-quality PPC-PHC by all patients with life-threatening and life-shortening diseases. * Abbreviations: AAP — : American Academy of Pediatrics PPC-PHC — : pediatric palliative care and pediatric hospice care

The provision of care to the newborn or young infant at the end of life is primarily motivated by concern and compassion. When examining the evidence base for most interventions, it is lacking - but this is not unique to this aspect of neonatal care. Nevertheless, a redirection of care from cure-oriented and life-extending measures to comfort and limitations of life-sustaining technologic interventions requires the neonatologist to apply practical knowledge skillfully and with prudence. Clinicians can acknowledge that patient needs require managing their end-of-life symptoms now; neither these patients nor their families should have to wait for research to catch up to their current needs.

Palliative care for infants, children, and adolescents encompasses numerous transitions and thresholds of uncertainty that challenge conventional clinical medicine. Palliative care clinicians have opportunities to be more comfortable amid such challenges, or perhaps even overcome them, if they are attuned to the unique times and places in which patients, their families, and caregivers find themselves throughout illness and recovery or transitioning toward the end of life. Patient–clinician encounters often dwell in these liminal places. The concept of liminality gives validation to the patient or family’s being “stuck in places betwixt and between” a past life rich with relationship and purpose and an acute, chronic, or critical illness. Or having resolved the acute crisis of hospitalization that place between the past bounds of illness and the uncertain path forward, perhaps even toward death. Liminality provides a framework for addressing the unbound spaces that patients and families occupy: What is past is behind—the present place is tenuous and temporary, and what is ahead uncertain. This place is where palliative care clinicians can offer clinicians and families guidance.

What is the best way to care for a child with severe neurologic impairment who seems to be dying and is in intractable pain? Can we give sedation as we remove life support? Is it ethically permissible to hasten death? In the United States, 5 states have legalized assisted suicide (although only for competent adults). In Belgium and the Netherlands, euthanasia is legal for children under some circumstances. We present a case in which parents and doctors face difficult decisions about palliative care. Experts from Belgium, the Netherlands, and the United States then discuss how they would respond to such a case.

For parents, the experience of having an infant in the NICU is often psychologically traumatic. No parent can be fully prepared for the extreme stress and range of emotions of caring for a critically ill newborn. As health care providers familiar with the NICU, we thought that we understood the impact of the NICU on parents. But we were not prepared to see the children in our own families as NICU patients. Here are some of the lessons our NICU experience has taught us. We offer these lessons in the hope of helping health professionals consider a balanced view of the NICU’s impact on families.

Pain and symptom management is considered one of the cornerstones of palliative and hospice medicine. However, general clinicians and specialists are not usually comfortable addressing the most common forms of pain seen in the pediatric population. In addition, non-pain symptom management, especially when related to underlying chronic medical conditions, can be managed by the general clinician and specialists. The goal of this article is to educate clinicians about pain categories, taking a detailed pain history, and developing a plan for treatment, including nonpharmacologic methods. Finally, we discuss common symptoms in patients with chronic medical conditions, including first-line treatment options.

An ethical dimension exists in nearly all decisions made. Yet, there are clinical decisions in which the ethical dilemma is so difficult for the clinician that it results in moral distress. We present one example of a morally distressing situation in which care was provided for a child who had altered physical abilities after a trauma and was being discharged to a suboptimal family environment. Caring for a child with an acquired spinal cord injury requires significant resources. When a family is able to physically care for the child, but has demonstrated incomplete follow-through, the team is at risk for experiencing significant moral distress.

No abstract available Keywords: decisions; ethics; neonatology; newborn; periviable; premature; value.

Over the past 30 years, and increasingly over the past decade, palliative care services characteristically address the complexity of communication, decision making, and management of end-of-life issues for patients and families of all ages. Clinical ethics services have a parallel 30-plus year history in the United States—so much so that some have offered that clinical ethics has “cut its teeth” on issues attendant to the beginning and end of life. The authors propose considerations necessary in determining the appropriateness of consultation with palliative care, clinical ethics, or both, and when either may be necessary but perhaps not sufficient for patient and family management. A resolution for any encountered tension and identification of common or overlapping domains for both consultants is presented.

Context Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing neonatal comfort care at the end-of-life (EOL). Objectives The purpose of this study was to evaluate current neonatal EOL comfort care practices and clinician satisfaction across America. Methods After institutional review board approval (516005), an anonymous, electronic survey was sent to members of the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine. Members of the listserv include neonatologists, neonatal fellow physicians, neonatal nurses, and neonatal nurse practitioners from across America (U.S. and Canada). Results There were 346/3000 (11.5%) responses with wide geographic distribution and high levels of intensive care responding (46.1% Level IV, 50.9% Level III, 3.0% Level II). Nearly half (45.2%) reported that their primary institution did not have neonatal comfort care guidelines. Of those reporting institutional neonatal comfort care guidelines, 19.1% do not address pain symptom management. Most guidelines also do not address gastrointestinal distress, anxiety, or secretions. Thirty-nine percent of respondents stated that their institution did not address physician compassion fatigue. Overall, 91.8% of respondents felt that their institution would benefit from further education/training in neonatal EOL care. Conclusion Across America, respondents confirmed significant variation and verified many institutions do not formally address neonatal EOL comfort care. Institutions with guidelines commonly appear to lack crucial areas of palliative care including patient symptom management and provider compassion fatigue. The overwhelming majority of respondents felt that their institutions would benefit from further neonatal EOL care training.

The application of palliative and hospice care to newborns in the neonatal intensive care unit (NICU) has been evident for over 30 years. This article addresses the history, current considerations, and anticipated future needs for palliative and hospice care in the NICU, and is based on recent literature review. Neonatologists have long managed the entirety of many newborns’ short lives, given the relatively high mortality rates associated with prematurity and birth defects, but their ability or willingness to comprehensively address of the continuum of interdisciplinary palliative, end of life, and bereavement care has varied widely. While neonatology service capacity has grown worldwide during this time, so has attention to pediatric palliative care generally, and neonatal-perinatal palliative care specifically. Improvements have occurred in family-centered care, communication, pain assessment and management, and bereavement. There remains a need to integrate palliative care with intensive care rather than await its application solely at the terminal phase of a young infant’s life—when s/he is imminently dying. Future considerations for applying neonatal palliative care include its integration into fetal diagnostic management, the developing era of genomic medicine, and expanding research into palliative care models and practices in the NICU.

Purpose: Studies demonstrate variation in survival for extremely premature babies (EPB) between centers and suggest different rates of initiating life-sustaining treatments. The AAP encourages institutions to develop “policies and procedures for antenatal counseling” for newborns who may be born < 26 weeks gestation. Pediatric trainees’ views regarding EPB vary by teaching center. Neonatology fellows report infrequent formal communication training. Parents of ill or dying EPB voice unmet emotional and spiritual needs. Neonatology fellowship …

Pressure exists to resuscitate younger and smaller preterm babies, but ability to predict how the earliest and tiniest will fare if they survive is limited. Virtual Mentor is a monthly bioethics journal published by the American Medical Association.

A monthly neonatal intensive care unit (NICU) morbidity and mortality conference (MMC) was used to study the documentation of end-of-life (EOL) care, and integrate related education for staff and trainees.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.A survey tool was developed and used at all neonatal MMCs 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.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 MMC, and greater awareness of issues important to EOL care throughout this period.Areas for improving EOL care exist in the NICU. The MMC 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.

Objective To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. Study design A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus. Results A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. Conclusions This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.