The logistics of withdrawing life-sustaining medical treatment in the neonatal intensive care unit.

Withdrawal of life sustaining medical treatments is a common mode of death in the neonatal intensive care unit. Shared decision making and communication are crucial steps prior to, during and after a withdrawal of life sustaining medical treatments. Discussion should include the steps to occur during the withdrawal. Physicians should recommend appropriate withdrawal steps based on family goals. Stepwise approach should be taken only if a family requests. Care should continue for the family and staff after the withdrawal and the infant's death.

Smartphone-Based Video Antenatal Preterm Birth Education: The Preemie Prep for Parents Randomized Clinical Trial.

Importance: Preterm birth is a leading cause of infant mortality and child morbidity. Preterm birth is not always unexpected, yet standard prenatal care does not offer anticipatory education to parents at risk of delivering preterm, which leaves parents unprepared to make health care choices during the pregnancy that can improve survival and decrease morbidity in case of preterm birth. Objective: To evaluate the effect of the Preemie Prep for Parents (P3) program on maternal knowledge of preterm birth, preparation for decision-making, and anxiety. Design, Setting, and Participants: Recruitment for this randomized clinical trial conducted at a US academic medical center took place from February 3, 2020, to April 12, 2021. A total of 120 pregnant persons with a risk factor for preterm birth were enrolled between 16 and 21 weeks' gestational age and followed up through pregnancy completion. Intervention: Starting at 18 weeks' gestational age, P3 program participants received links delivered via text message to 51 gestational age-specific short animated videos. Control participants received links to patient education webpages from the American College of Obstetricians and Gynecologists. Main Outcomes and Measures: At 25 weeks' gestation, scores on the Parent Prematurity Knowledge Questionnaire (scored as percent correct), Preparation for Decision Making Scale (scored 0-100), and Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety computerized adaptive test. Analysis was based on an intention to treat. Results: A total of 120 pregnant participants (mean [SD] age, 32.5 [4.9] years) were included in the study; 60 participants were randomized to each group. Participants in the P3 group scored higher than those in the control group on knowledge of long-term outcomes at 25 weeks (88.5% vs 73.2%; estimated difference, 15.3 percentage points; 95% CI, 8.3-22.5 percentage points; P < .001). Participants in the P3 group reported being significantly more prepared than did participants in the control group for neonatal resuscitation decision-making at 25 weeks (Preparation for Decision Making Scale score, 76.0 vs 52.3; difference, 23.7; 95% CI, 14.1-33.2). There was no difference between the P3 group and the control group in anxiety at 25 weeks (mean [SE] PROMIS Anxiety scores, 53.8 [1.1] vs 54.0 [1.1]; difference, -0.1; 95% CI, -3.2 to 2.9). Conclusions and Relevance: In this randomized clinical trial, pregnant persons randomly assigned to the P3 program had more knowledge of core competencies and were more prepared to make decisions that affect maternal and infant health, without experiencing worse anxiety. Mobile antenatal preterm birth education may provide a unique benefit to parents with preterm birth risk factors. Trial Registration: ClinicalTrials.gov Identifier: NCT04093492.

Role of palliative care in centers performing maternal-fetal interventions.

Advancements in maternal-fetal interventions have allowed for direct fetal access, shifting the focus of interventions from maternal health for fetal health to a focus on sole fetal/neonatal benefit. Given that access to the fetus can only be obtained through the mother, there are ethical considerations important to consider when counseling the maternal-fetal dyad. The goals of maternal-fetal interventions range from improved fetal/neonatal survival to decreased long-term morbidities and improved quality of life. However, interventions to improve quality of life may not always achieve their desired result. Additionally, maternal-fetal interventions have risks such as premature birth and other complications that should be heavily considered as they may offset the potential benefits of the procedure. While some families elect for a maternal-fetal intervention, doing every potential postnatal intervention may not be in alignment with their goals depending on the outcome of the intervention. Given the complex, value-laden decision-making that is crucial to counseling parents about decisions surrounding maternal-fetal interventions and subsequent neonatal care, palliative care specialists should be utilized in fetal centers. Palliative care specialists are trained to assist with complex, goal concordant decision-making and can guide families and medical teams through the decision points that arise during the treatment journey.

Bioethics for Neonatal Cardiac Care.

BACKGROUND: Clinicians caring for neonates with congenital heart disease encounter challenges with ethical implications in daily practice and must have some basic fluency in ethical principles and practical applications. METHODS: Good ethical practice begins with a thorough understanding of the details and narrative of each individual case, examination via classic principles of bioethics, and further framing of that translation into practice. RESULTS: We explore some of these issues and expand awareness through the lens of a case presentation beginning with fetal considerations through end-of-life discussions. CONCLUSIONS: We include specific sections that bring attention to shared decision-making, research ethics, and outcomes reporting. We review empirical evidence and highlight recommendations.

A Venn diagram of vulnerability: The convergence of pediatric palliative care and child maltreatment a narrative review, and a focus on communication.

Child maltreatment and end-of-life care independently represent two of the most emotion-laden and uncomfortable aspects of pediatric patient care. Their overlap can be uniquely distressing. This review explores ethical and legal principles in such cases and provides practical advice for clinicians. The review focuses on three archetypal scenarios of overlap: life-limiting illness in a child for whom parental rights have been terminated; life-threatening injury under CPS investigation; and complex end-of-life care which may warrant CPS involvement. While each scenario presents unique challenges, one consistent theme is the centrality of effective communication. This includes empathic communication with families and thoughtful communication with providers and community stakeholders. In almost all cases, everyone genuinely wants to do what is in the best interest of the child in these unthinkable circumstances. Transparent and collaborative communication can ensure that broad perspectives are considered to ensure that each child gets the best possible care in a manner adherent with ethical and legal standards, as they apply to each case.

Withdrawing and Withholding Life-Sustaining Medical Therapies in the Neonatal Intensive Care Unit: Case-Based Approaches to Clinical Controversies.

In cases whereby the continuation of life-sustaining medical therapies is not in the infant's best interest and does not align with the parents' goals, it is ethically and morally advisable to withhold/withdraw life-sustaining medical therapies. Withdrawing/withholding artificial nutrition hydration is not morally or ethically different from other medical treatments. Determination of what and when to withdraw should occur through shared decision-making considering the parents' values and the infant's physiology and comfort. The practice of physician recommendations followed by parental informed nondissent should be considered in these instances.

Parent Health-Related Quality of Life for Infants with Congenital Anomalies Receiving Neonatal Intensive Care.

OBJECTIVE: To examine factors associated with parent quality of life during and after neonatal intensive care unit (NICU) discharge among parents of infants with congenital anomalies admitted to the NICU. STUDY DESIGN: This secondary analysis of 2 prospective cohort studies between 2016 and 2020 at a level IV NICU included parents of infants with major congenital anomalies receiving NICU care. The primary outcomes were parent health-related quality of life (HRQL) during the NICU stay and at 3 months post-NICU discharge. RESULTS: A total of 166 parent-infant dyads were enrolled in the study, 124 of which completed the 3-month follow-up interview. During the NICU stay, parent history of a mental health disorder (-13 points), earlier gestational age (-17 points), consultation by multiple specialists (-11 points), and longer hospital stay (-5 points) were associated with lower HRQL. Parents of infants with a neonatal surgical anomaly had higher HRQL (+4 points). At 3 months after NICU discharge, parent receipt of a psychology consult in the NICU, the total number of consultants involved in the child's care, and an infant with a nonsurgical anomaly were associated with lower parent HRQL. Parents of infants with a gastrostomy tube (-6 points) and those with hospital readmission (-5 points) had lower HRQL. Comparing same-parent differences in HRQL over time, parents of infants with anomalies did not show significant improvement in HRQL on discharge home. CONCLUSION: Parents of infants with congenital anomalies reported low HRQL at baseline and at discharge. Parents of infants with nonsurgical, medically complex anomalies requiring multispecialty care represent a vulnerable group who could be better supported during and after their NICU stay.

Medical and surgical interventions and outcomes for infants with trisomy 18 (T18) or trisomy 13 (T13) at children's hospitals neonatal intensive care units (NICUs).

OBJECTIVES: To examine characteristics and outcomes of T18 and T13 infants receiving intensive surgical and medical treatment compared to those receiving non-intensive treatment in NICUs. STUDY DESIGN: Retrospective cohort of infants in the Children's Hospitals National Consortium (CHNC) from 2010 to 2016 categorized into three groups by treatment received: surgical, intensive medical, or non-intensive. RESULTS: Among 467 infants admitted, 62% received intensive medical treatment; 27% received surgical treatment. The most common surgery was a gastrostomy tube. Survival in infants who received surgeries was 51%; intensive medical treatment was 30%, and non-intensive treatment was 72%. Infants receiving surgeries spent more time in the NICU and were more likely to receive oxygen and feeding support at discharge. CONCLUSIONS: Infants with T13 or T18 at CHNC NICUs represent a select group for whom parents may have desired more intensive treatment. Survival to NICU discharge was possible, and surviving infants had a longer hospital stay and needed more discharge supports.

Information Order for Periviable Counseling: Does It Make a Difference?

OBJECTIVES: To examine whether the order of presenting survival vs disability information, with or without the description of infant neonatal intensive care unit (NICU) experiences would influence treatment choice during hypothetical periviable birth counseling. STUDY DESIGN: An internet sample of childbearing-aged women (n = 839) viewed a pictograph displaying the chances of survival and a pictograph on the chances of disability for a baby resuscitated during the periviable period. The sample was randomized to the order of pictographs and level of description of infant NICU experiences. Participants selected between intensive care or comfort care and reported their personal values. RESULTS: The order of the information influenced treatment choices (P = .02); participants were more likely to choose intensive care if they saw the survival pictograph first (70%) than the disability pictograph first (62%). Level of description of premature infant NICU experiences did not influence treatment choice (P = .92). Participants who valued sanctity of life, autonomy in making decisions, who were more religious, and had adequate health literacy were more likely to choose intensive care. Such participant characteristics had greater explanatory power than the experimental manipulations. CONCLUSIONS: Subtle differences in how information is presented may influence critical decisions. However, even among women with the same values, diversity in treatment choice remains.

Inter-center variation in autopsy practices among regional neonatal intensive care units (NICUs).

OBJECTIVE: To characterize infants who underwent autopsy in regional neonatal intensive care units (NICUs) and examine inter-center variability in autopsy completion. STUDY DESIGN: Retrospective cohort study of infants who died between 2010 and 2016 from 32 participating hospitals in the Children's Hospital Neonatal Database (CHND). Maternal/infant demographics and hospital stay data were collected, along with autopsy rates by center, year, and region. Data analysis utilized bivariate and multivariable statistics. RESULT: Of 6299 deaths, 1742 (27.7%) completed autopsy. Infants who underwent autopsy had higher median birth weight (2 124 g vs. 1 655 g) and gestational age (34 vs. 32 weeks). No differences were seen in sex, length of stay, or primary cause of death. Marked inter-center variability was observed, with 17-fold adjusted difference (p < 0.001) in autopsy rates. CONCLUSION: Patient characteristics do not account for variability in autopsy practices across regional NICUs. Factors such as provider practices and parental preferences should be investigated.

Development and testing of a self-report measure of preparing to parent in the context of a fetal anomaly diagnosis.

OBJECTIVE: To generate a self-report instrument to capture clinically relevant variations in expectant parents' caregiving development, specified by how they are preparing to parent an infant with a major congenital anomaly. METHODS: Recent literature structured domains to guide item generation. Evaluations by experts and expectant parents led to a refined instrument for field testing. Psychometric testing included exploratory factor analysis, internal consistency, and test-retest reliability. RESULTS: Samples included expert evaluators (n = 9), and expectant parent evaluators (n = 20) and expectant mother field testers (n = 67) with fetal anomaly diagnoses. Preparing to Parent-Act, Relate, Engage (PreP-ARE) resulted from a three factor solution that explained 71.8 % of the total variance, with global Cronbach's α = 0.72, and sub-scales 0.81, 0.65, 0.72 respectively. Cohen's weighted kappa indicated all items were acceptably reliable, with 14 of 19 items showing moderate (≥ 0.41) or good (≥ 0.61) reliability. Convergent validity was found between the maternal antenatal attachment and Act scales (r = 0.39, p = 0.001). CONCLUSION: This empirically-based instrument was demonstrated to be valid and reliable, and has potential for studying this transitional time. PRACTICE IMPLICATIONS: PreP-ARE could be used to understand patient responses to the diagnosis, level of engagement, readiness to make decisions, and ability to form collaborative partnerships to manage healthcare.

Maternal Outcomes of Ongoing Pregnancies Complicated by Fetal Life-Limiting Conditions.

OBJECTIVE: This study aimed to examine maternal outcomes of ongoing pregnancies complicated by fetal life-limiting conditions. STUDY DESIGN: This was a retrospective matched cohort study of women with a diagnosis of fetal life-limiting condition between 2010 and 2018 in a single academic center. Cases were matched to controls (women who had normal fetal anatomic survey) according to year of delivery, body mass index, and parity in a 1:4 ratio. Bivariable and multivariable analyses were performed to compare the prevalence of the primary composite outcome, which included any one of the following: preeclampsia, gestational diabetes, cesarean delivery, third and fourth degree laceration, postpartum hemorrhage, blood transfusion, endometritis or wound infection, maternal intensive care unit admission, hysterectomy and maternal death, between cases and controls. RESULTS: During the study period, we found 101 cases that met inclusion criteria, matched to 404 controls. The rate of the composite maternal outcome did not differ between the two groups (39.6 vs. 38.9%, p = 0.948). For individual outcomes, women with diagnosis of fetal life-limiting condition had higher rates of blood transfusion (2.0 vs. 0%, p = 0.005) and longer length of the first stage of labor (median of 12 [6.8-22.0] hours vs. 6.6 [3.9-11.0] hours; p < 0.001). In a multivariable analysis, first stage of labor continued to be longer by an average of 6.48 hours among women with a diagnosis of fetal life-limiting condition compared with controls. CONCLUSION: After controlling for confounding factors, except a longer first stage of labor, women diagnosed with fetal life-limiting conditions who continued the pregnancy did not have a higher rate of adverse maternal outcomes. KEY POINTS: · The rates of ongoing pregnancies with fetal life-limiting conditions are increasing.. · Women with ongoing pregnancies with fetal life-limiting conditions had longer first stage of labor.. · The rest of the adverse maternal outcomes were not increased in this obstetric population..

Intention to treat: obstetrical management at the threshold of viability.

BACKGROUND: Despite medical advances in the care of extremely preterm neonates and growing acceptance of resuscitation at 23 and even 22 weeks gestation, controversy remains concerning the use of antepartum obstetric intervention s that are intended to improve outcomes in the setting of anticipated extremely preterm birth. In the absence of demonstrated benefit at <23 weeks gestation and with uncertain benefit at 23 weeks gestation, previous obstetric committee opinions have advised against their use at these gestational ages. OBJECTIVE: The purpose of this study was to review the use of obstetric intervention s at the threshold of viability based on neonatal resuscitation plan and to review the odds of survival to neonatal intensive care unit discharge based on use of obstetric intervention s with adjustment for neonatal factors. STUDY DESIGN: This retrospective study of 6 study centers reviewed pregnant patients who were admitted between 22+0/7 and 24+6/7 weeks gestation facing delivery from 2011-2015. Patients with known anomalies or missing data were excluded. Records were reviewed for demographics, resuscitation plan, and obstetric intervention s. Mode of delivery, delivery room care, and final infant dispositions were recorded. Multiple gestations were included as 1 pregnancy in regard to the use of obstetric intervention s and were excluded from survival analysis. RESULTS: Four hundred seventy-eight mothers met the inclusion criteria. When resuscitation was planned, mothers were more likely to receive all conventional obstetric intervention s (antenatal steroids, magnesium sulfate for neuroprotection, tocolytics, and Group Beta Streptococcus prophylaxis), regardless of gestational age at admission, and were more likely to be delivered by cesarean section (P<.05). Analyzed as a group, when antenatal steroids, magnesium sulfate, tocolytics and Group Beta Streptococcus prophylaxis were administered, the odds of survival to neonatal intensive care unit discharge increased for newborn infants who were born at 22 (odds ratio, 11.33; 95% confidence interval, 1.405-91.4) and 23 weeks gestation (odds ratio, 15.5; 95% confidence interval, 3.747-64.11; P<.05). In singletons, the odds of survival to neonatal intensive care unit discharge was not improved by cesarean delivery vs vaginal delivery, even after adjustment for the use of additional interventions, weight, gender, and gestational age (odds ratio, 1.0; 95% confidence interval, 0.59-1.8; P=.912). CONCLUSION: In this study, when postnatal resuscitation was planned at 22 and 23 weeks gestation, women were more likely to receive antenatal steroids, magnesium sulfate, and antibiotics; provision of this bundle imparted survival benefit at 23 weeks gestation but could not be demonstrated at 22 weeks gestation because of the small sample size. These findings support of neonate-oriented obstetric interventions in the setting of delivery at 23 weeks gestation when resuscitation is planned and further exploration of optimal obstetric care when resuscitation of infants who were born at 22 weeks gestation is anticipated.

Adaptive Leadership in Parents Caring for their Children Born with Life-Threatening Conditions.

PURPOSE: The purpose of this study was to chronicle the adaptive challenges and adaptive work, including emerging leadership behaviors, recounted over time by the parents of very young children diagnosed before birth with life threatening conditions. DESIGN AND METHODS: A descriptive, follow-up study design was used for the current study. Following the original grounded dimensional analysis study completed in 2012, the corpus for this analysis was collected in 2014. In-depth, audio-recorded interviews were conducted with 15 families (8 couples, 7 mothers). The 15 children, born with cardiac, abdominal, and cerebrospinal anomalies, were 14 - 37 months or deceased at follow-up. A directed content analysis of transcribed verbatim interviews was structured by the Adaptive Leadership framework. RESULTS: Parents described behaviors that indicated a non-linear development towards adaptive leadership as they accomplished the adaptive work within intra- and interpersonal domains that was necessary to address challenges over time. Not all parents described abilities and/or a willingness to mobilize others to do adaptive work, suggesting that adaptive leadership remained an unrealized potential. CONCLUSIONS: Understood as a complex adaptive system, parents of medically at-risk children hold potential for development towards adaptive leadership and collaborative partnership within the family and with healthcare providers. PRACTICE IMPLICATIONS: Due to improved survival rates, parents face ongoing challenges related to their children's unpredictable and often chronic health needs. Study findings illustrate parents' adaptive work and leadership behaviors, which can inform nursing assessments, as well as the type and timing for intervention.

Nonimmune Hydrops Fetalis.

Nonimmune hydrops fetalis (NIHF) historically has been considered a lethal fetal condition. Understanding NIHF to be a symptom or an end-stage status of a variety of fetal conditions, along with improved fetal diagnostics and interventions, has changed the landscape for at least some fetuses. Understanding the pathophysiologic mechanisms has led to the development of diagnostic algorithms, improved understanding of cause, and therefore fetal or neonatal treatments. Multidisciplinary counseling and shared decision making are critical to supporting families through pregnancy decisions, potential fetal therapeutic interventions, neonatal management decisions, and at times accepting or transitioning to palliative care.

Perinatal Counseling Following a Diagnosis of Trisomy 13 or 18: Incorporating the Facts, Parental Values, and Maintaining Choices.

BACKGROUND: Families with a prenatal diagnosis of trisomy 13 or 18 are told many things, some true and some myths. They present with differing choices on how to proceed that may or may not be completely informed. PURPOSE: To provide the prenatal counselor with a review of the pertinent obstetrical and neonatal outcome data and ethical discussion to help them in supporting families with the correct information for counseling. METHODS/SEARCH STRATEGY: This article provides a review of the literature on facts and myths and provides reasonable outcome data to help families in decision making. FINDINGS/RESULTS: These disorders comprise a heterogeneous group regarding presentation, outcomes, and parental goals. The authors maintain that there needs to be balanced decision-making between parents and providers for the appropriate care for the woman and her infant. IMPLICATIONS FOR PRACTICE: Awareness of this literature can help ensure that prenatal and palliative care consultation incorporates the appropriate facts and parental values and in the end supports differing choices that can support the infant's interests.

Giving Voice to Parents in the Development of the Preemie Prep for Parents (P3) Mobile App.

BACKGROUND: Parents at risk for preterm birth frequently receive prematurity education when the mother is hospitalized for premature labor. Parental ability to learn and consider the information is limited because of the stress of the hospitalization. A promising approach is dissemination of information to at-risk parents before the birth hospitalization. PURPOSE: This article describes formative research used to develop smartphone-based prematurity education app for parents at-risk for preterm birth. METHODS: Stakeholders were parents with a prior preterm birth. Using stakeholder meeting transcripts, constant comparative analysis was used to reflect upon the parental voice. RESULTS: The parents named the app, Preemie Prep for Parents (P3). Parent perspectives revealed desire for information in the following 5 categories. (1) Power in knowledge and control: parents want autonomy when learning information that may influence medical decision-making. (2) Content and framing of information: they desire information from a trusted resource that helps promote prenatal health and provides neonatal intensive care information. (3) Displaying content: parents want personalization, push notifications, photographs displaying fetal development, and easy-to-understand statistics. (4) Providing information without causing harm: they desire non-value-laden information, and they do not support "gamifying" the app to enhance utilization. (5) Decision making: parents want information that would benefit their decision making without assuming that parents have a certain outlook on life or particular values. IMPLICATIONS FOR PRACTICE: These findings support the need for the P3 App to aid in decision making when parents experience preterm birth. IMPLICATIONS FOR RESEARCH: The findings highlight the need to study the effects of smartphone-based prematurity education on medical decision-making.

Center, Gestational Age, and Race Impact End-of-Life Care Practices at Regional Neonatal Intensive Care Units.

OBJECTIVE: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). STUDY DESIGN: We conducted a retrospective cohort analysis using the Children's Hospital Neonatal Database during 2010-2016. A total of 6299 nonsurviving infants cared for in 32 participating regional NICUs were included to examine intercenter variation and the effects of gestational age, race, and cause of death on 3 end-of-life care practices: do not attempt resuscitation orders (DNR), cardiopulmonary resuscitation within 6 hours of death (CPR), and withdrawal of life-sustaining therapies (WLST). Factors associated with these practices were used to develop a multivariable equation. RESULTS: Dying infants in the cohort underwent DNR (55%), CPR (21%), and WLST (73%). Gestational age, cause of death, and race were significantly and differently associated with each practice: younger gestational age (<28 weeks) was associated with CPR (OR 1.7, 95% CI 1.5-2.1) but not with DNR or WLST, and central nervous system injury was associated with DNR (1.6, 1.3-1.9) and WLST (4.8, 3.7-6.2). Black race was associated with decreased odds of WLST (0.7, 0.6-0.8). Between centers, practices varied widely at different gestational ages, race, and causes of death. CONCLUSIONS: From the available data on end-of-life care practices for regional NICU patients, variability appears to be either individualized or without consistency.