Understanding family-centered care in the NICU: a scoping review protocol.

OBJECTIVE: This scoping review aims to identify and categorize the definitions of neonatal intensive care unit (NICU) family-centered care (FCC) and its associated concepts. It also aims to identify and categorize the practices and interventions that comprise NICU FCC, and catalog the metrics used to evaluate NICU FCC. INTRODUCTION: FCC has been identified as an important element of care for neonates and infants admitted to the NICU, and there is clear evidence that the incorporation of families in care improves clinical outcomes. However, FCC has been linked to numerous associated terms and concepts and lacks a unifying definition or framework, thus limiting the ability to categorize, prioritize, and identify practices and interventions to optimize both institutional approaches for individual centers and for the field at large. INCLUSION CRITERIA: Studies that include or apply at least one FCC concept or its associated terms will be considered eligible for inclusion. Studies not related exclusively to the NICU will be excluded. METHODS: The review will follow the JBI methodology for scoping reviews and will be reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Several electronic databases and sources of gray literature will be searched from 1992 to the present day. The review will include only full-text studies in English and will be independently screened by a minimum of 2 authors. Data will be extracted using a modified JBI data extraction tool and presented using narrative summaries; concept mapping; and categorization of practices, interventions, and metrics.

Navigating the post-Dobbs landscape: ethical considerations from a perinatal perspective.

Restrictive abortion laws have impacts reaching far beyond the immediate sphere of reproductive health, with cascading effects on clinical and ethical aspects of neonatal care, as well as perinatal palliative care. These laws have the potential to alter how families and clinicians navigate prenatal and postnatal medical decisions after a complex fetal diagnosis is made. We present a hypothetical case to explore the nexus of abortion care and perinatal care of fetuses and infants with life-limiting conditions. We will highlight the potential impacts of limited abortion access on families anticipating the birth of these infants. We will also examine the legally and morally fraught gray zone of gestational viability where both abortion and resuscitation of live-born infants can potentially occur, per parental discretion. These scenarios are inexorably impacted by the rapidly changing legal landscape in the U.S., and highlight difficult ethical dilemmas which clinicians may increasingly need to navigate.

The value and limitations of using predetermined criteria in decision making for maternal-fetal interventions.

Maternal-fetal interventions-such as prenatal fetal myelomeningocele (MMC) repair-are at the forefront of clinical innovation within maternal-fetal medicine, pediatric surgery, and neonatology. Many centers determine eligibility for innovative procedures using pre-determined inclusion and exclusion criteria based on seminal studies, for example, the "Management of Myelomeningocele Study" for prenatal MMC repair. What if a person's clinical presentation does not conform to predetermined criteria for maternal-fetal intervention? Does changing criteria on a case-by-case basis (i.e., ad hoc) constitute an innovation in practice and flexible personalized care or transgression of commonly held standards with potential negative consequences? We outline principle-based, bioethically justified answers to these questions using fetal MMC repair as an example. We pay special attention to the historical origins of inclusion and exclusion criteria, risks and benefits to the pregnant person and the fetus, and team dynamics. We include recommendations for maternal-fetal centers facing these questions.

Physician Perceptions on Quality of Life and Resuscitation Preferences for Extremely Early Newborns.

OBJECTIVE: The study aimed to explore physician views on whether extremely early newborns will have an acceptable quality of life (QOL), and if these views are associated with physician resuscitation preferences. STUDY DESIGN: We performed a cross-sectional survey of neonatologists and maternal fetal medicine (MFM) attendings, fellows, and residents at four U.S. medical centers exploring physician views on future QOL of extremely early newborns and physician resuscitation preferences. Mixed-effects logistic regression models examined association of perceived QOL and resuscitation preferences when adjusting for specialty, level of training, gender, and experience with ex-premature infants. RESULTS: A total of 254 of 544 (47%) physicians were responded. A minority of physicians had interacted with surviving extremely early newborns when they were ≥3 years old (23% of physicians in pediatrics/neonatology and 6% in obstetrics/MFM). The majority of physicians did not believe an extremely early newborn would have an acceptable QOL at the earliest gestational ages (11% at 22 and 23% at 23 weeks). The majority of physicians (73%) believed that having an extremely preterm infant would have negative effects on the family's QOL. Mixed-effects logistic regression models (odds ratio [OR], 95% confidence interval [CI]) revealed that physicians who believed infants would have an acceptable QOL were less likely to offer comfort care only at 22 (OR: 0.19, 95% CI: 0.05-0.65, p < 0.01) and 23 weeks (OR: 0.24, 95% CI: 0.07-0.78, p < 0.02). They were also more likely to offer active treatment only at 24 weeks (OR: 9.66, 95% CI: 2.56-38.87, p < 0.01) and 25 weeks (OR: 19.51, 95% CI: 3.33-126.72, p < 0.01). CONCLUSION: Physician views of extremely early newborns' future QOL correlated with self-reported resuscitation preferences. Residents and obstetric physicians reported more pessimistic views on QOL. KEY POINTS: · Views of QOL varied by specialty and level of training.. · Contact with former extremely early newborns was limited.. · QOL views were associated with preferred resuscitation practices..

Resuscitation decisions in fetal myelomeningocele repair should center on parents' values: a counter analysis.

In our response to, "Parental request for non-resuscitation in fetal myelomeningocele repair: an analysis of the novel ethical tensions in fetal intervention" by Wolfe and co-authors, we argue that parental authority should guide resuscitation decision-making for a fetus at risk for preterm delivery as a complication of fetal myelomeningocele (fMMC) repair. Due to the elevated morbidity and mortality risks of combined myelomeningocele, extreme prematurity, and fetal hypoxia, parents' values regarding the acceptability of possible outcomes should be elicited and their preferences honored. Ethical decision-making in these situations must also consider the broader context of the fetal-maternal dyad. Innovations in fetoscopic approaches to fMMC repair may pose additional complexity to these resuscitation decisions.

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.

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.

Should Extremely Premature Babies Get Ventilators During the COVID-19 Crisis?

In a crisis, societal needs take precedence over a patient's best interests. Triage guidelines, however, differ on whether limited resources should focus on maximizing lives or life-years. Choosing between these two approaches has implications for neonatology. Neonatal units have ventilators, some adaptable for adults. This raises the question of whether, in crisis conditions, guidelines for treating extremely premature babies should be altered to free-up ventilators. Some adults who need ventilators will have a survival rate higher than some extremely premature babies. But surviving babies will likely live longer, maximizing life-years. Empiric evidence demonstrates that these babies can derive significant survival benefits from ventilation when compared to adults. When "triaging" or choosing between patients, justice demands fair guidelines. Premature babies do not deserve special consideration; they deserve equal consideration. Solidarity is crucial but must consider needs specific to patient populations and avoid biases against people with disabilities and extremely premature babies.

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.

"We want to do everything": how parents represent their experiences with maternal-fetal surgery online.

OBJECTIVE: There is little available evidence on how patients make decisions regarding maternal-fetal surgery. We studied online patient narratives for insight on how pregnant women and their partners consider such decisions. STUDY DESIGN: We used Google search strings and a purposive snowball method to locate patient blogs. We analyzed blog entries using qualitative methods to identify author details, medical information, and common themes. RESULTS: We located 32 blogs of patients who describe maternal-fetal surgery consultation. Twenty-eight (88%) underwent fetal interventions. Most (91%) explicitly described consultation with maternal-fetal surgery teams; 83% of those depicted making decisions prior to formal consultation. Few expressed regret for decisions made (6%). CONCLUSIONS AND RELEVANCE: Patients openly share experiences with maternal-fetal surgery online. Women portray their decisions as made outside of formal medical processes and overwhelmingly feel these decisions were "right". As the field of maternal-fetal surgery expands, prospective evaluation of patient decision-making is needed.

Moving toward a shared process: The impact of parent experiences on perinatal palliative care.

Perinatal palliative care programs seek to support parents expecting a baby diagnosed with a serious medical condition. Clinicians have increasingly recognized the importance of parental perspectives on the medical care mothers and their fetuses and live-born children receive, especially regarding factors influencing individual choices and knowledge of the medical community. We describe, using literature on trisomy 13 and trisomy 18, how information shared between parents and providers can improve perinatal counseling and family support.