Parent Preferences for Neonatal Intensive Care Unit Physician Attire: A Cross-Sectional Study.

OBJECTIVE: Physician attire may influence the parent-provider relationship. Previous studies in adult and outpatient pediatrics showed that formal attire with a white coat was preferred. We aimed to describe parent preferences for physician attire in the neonatal intensive care unit (NICU). STUDY DESIGN: We surveyed 101 parents in a level IV NICU. The survey included photographs of a physician in seven different attires. Attire was scored in five domains and parents selected the most preferred attire in different contexts. All attires were compared with formal attire with white coat. Descriptive statistics, Fisher's exact tests, and one-way analysis of variance were used to compare parent responses. RESULTS: Scrubs without white coat (40.8 [7.0]) and formal attire without white coat (39.7 [8.0]) had the highest mean (standard deviation) composite preference scores. However, no significant differences between formal attire with white coat (37.1 [9.0]) versus any other attire were observed. When asked to choose a single most preferred attire, scrubs with a coat (32%) and formal with a coat (32%) were chosen most often, but preferences varied by clinical context and parent age. For example, parents preferred surgical scrubs for physicians performing procedures. Parents indicated that physician attire is important to them but does not influence their satisfaction with care. CONCLUSION: Although parents generally favored formal attire and scrubs, the variations based on the context of care and lack of significant preference of one attire suggests that a single dress code policy for physicians in a NICU is unlikely to improve the patient-provider relationship. KEY POINTS: · Adult patients prefer doctors to wear formal attire.. · Physician attire preferences influenced by age, setting, and context of care.. · Little is known about physician attire preferences of the parents of neonates.. · Unlike adult patients, NICU parents did not prefer formal attire with a white coat..

Shifting Provider Attitudes and Institutional Resources Surrounding Resuscitation at the Limit of Gestational Viability.

OBJECTIVE: This study aimed to provide contemporary data regarding provider perceptions of appropriate care for resuscitation and stabilization of periviable infants and institutional resources available to providers. STUDY DESIGN: A Qualtrics survey was emailed to 672 practicing neonatologists in the United States by use of public databases. Participants were asked about appropriate delivery room care for infants born at 22 to 26 weeks gestational age, factors affecting decision-making, and resources utilized regarding resuscitation. Descriptive statistics were used to analyze the dataset. RESULTS: In total, 180 responses were received, and 173 responses analyzed. Regarding preferred course of care based on gestational age, the proportion of respondents endorsing full resuscitation decreased with decreasing gestational age (25 weeks = 99%, 24 = 64%, 23 = 16%, and 22 = 4%). Deference to parental wishes correspondingly increased with decreasing gestational age (25 weeks = 1%, 24 = 35%, 23 = 82%, and 22 = 46%). Provision of comfort care was only endorsed at 22 to 23 weeks (23 weeks = 2%, 22 = 50%). Factors most impacting decision-making at 22 weeks gestational age included: outcomes based on population data (79%), parental wishes (65%), and quality of life measures (63%). Intubation with a 2.5-mm endotracheal tube (84%), surfactant administration in the delivery room (77%), and vascular access (69%) were the most supported therapies for initial stabilization. Availability of institutional resources varied; the most limited were obstetric support for cesarean delivery at the limit of viability (37%), 2.0-mm endotracheal tube (45%), small baby protocols (46%), and a consulting palliative care teams (54%). CONCLUSION: There appears to be discordance in provider attitudes surrounding preferred actions at 23 and 22 weeks. Provider attitudes regarding decision-making at the limit of viability and identified resource limitations are nonuniform. Between-hospital variations in outcomes for periviable infants may be partly attributable to lack of provider consensus and nonuniform resource availability across institutions. KEY POINTS: · Within the past decade, there has been a shift in the gray zone from 23-24 to 22-23 weeks gestation.. · Attitudes around resuscitation of infants are nonuniform despite perceived standardized approaches.. · Institutional variability in resources may contribute to variation in outcomes of periviable infants..

Ethical Cultures in Perinatal Care: Do They Exist? Correlation of Provider Attitudes with Periviability Practices at Six Centers.

OBJECTIVE: This study aimed to compare attitudes of providers regarding perinatal management and outcomes for periviable newborns of caregivers at centers with higher resuscitation (HR) and lower resuscitation (LR) rates in the delivery room. STUDY DESIGN: All obstetric and neonatal clinical providers at six U.S. sites were invited to complete an anonymous online survey. Survey responses were compared with clinical data collected from a previous retrospective study comparing centers' rates of planned resuscitation. Responses were analyzed by multivariable logistic and linear regression to assess how HR versus LR center respondents differed in management preferences and outcome predictions. RESULTS: Paradoxically, HR versus LR respondents, when adjusting for other variables, were less likely to respond that interventions such as antenatal steroids (odds ratio: 0.61, 95% confidence interval [CI]: 0.42-0.88, p < 0.009) and resuscitation (OR: 0.59, 95% CI: 0.44-0.78, p < 0.001) should be given at 22 weeks. HR versus LR respondents also reported lower likelihood of survival and acceptable quality of life (OR: 0.7, 95% CI: 0.53-0.93, p = 0.012) at 23 weeks. CONCLUSION: Despite higher rates of planned resuscitation at 22 and 23 weeks, steroid usage and survival rates did not differ between HR and LR sites. In this subsequent survey, respondents from HR centers had a less favorable outlook on interventions for these newborns than those at LR centers, suggesting that instead of driving practices, attitudes may be more closely associated with experiences of clinical outcomes.

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.

Antenatal Periviability Counseling and Decision Making: A Retrospective Examination by the Investigating Neonatal Decisions for Extremely Early Deliveries Study Group.

OBJECTIVE: To describe periviability counseling practices and decision making. STUDY DESIGN: This is a retrospective review of mothers and newborns delivering between 22 and 24 completed weeks from 2011 to 2015 at six U.S. centers. Maternal and fetal/neonatal clinical and maternal sociodemographic data from medical records and geocoded sociodemographic information were collected. Separate analyses examined characteristics surrounding receiving neonatology consultation; planning neonatal resuscitation; and centers' planned resuscitation rates. RESULTS: Neonatology consultations were documented for 40, 63, and 72% of 498 mothers delivering at 22, 23, and 24 weeks, respectively. Consult versus no-consult mothers had longer median admission-to-delivery intervals (58.7 vs. 8.7 h, p < 0.001). Consultations were seen more frequently when parental decision making was evident. In total, 76% of mothers had neonatal resuscitation planned. Resuscitation versus no-resuscitation newborns had higher mean gestational ages (24.0 vs. 22.9 weeks, p < 0.001) and birthweights (618 vs. 469 g, p < 0.001). Planned resuscitation rates differed at higher (HR) versus lower (LR) rate centers at 22 (43 vs. 7%, p < 0.001) and 23 (85 vs. 58%, p < 0.001) weeks. HR versus LR centers' populations had more socioeconomic hardship markers but fewer social work consultations (odds ratio: 0.31; confidence interval: 0.15-0.59, p < 0.001). CONCLUSION: Areas requiring improvement included delivery/content of neonatology consultations, social work support, consideration of centers' patient populations, and opportunities for shared decisions.

Evaluating the Use of a Decision Aid for Parents Facing Extremely Premature Delivery: A Randomized Trial.

OBJECTIVE: To assess decisional conflict and knowledge about prematurity among mothers facing extreme premature delivery when the counseling clinicians were randomized to counsel using a validated decision aid compared with usual counseling. STUDY DESIGN: In this randomized trial, clinicians at 5 level III neonatal intensive care units in the US were randomized to supplement counseling using the decision aid or to counsel mothers in their usual manner. We enrolled mothers with threatened premature delivery at 220/7 to 256/7 weeks of gestation within 7 days of their counseling. The primary outcome was the Decisional Conflict Scale (DCS) score. One hundred mothers per group were enrolled to detect a clinically relevant effect size of 0.4 in the Decisional Conflict Scale. Secondary outcomes included knowledge about prematurity; scores on the Preparedness for Decision Making scale; and acceptability. RESULTS: Ninety-two clinicians were randomized and 316 mothers were counseled. Of these, 201 (64%) mothers were enrolled. The median gestational age was 24.1 weeks (IQR 23.7-24.9). In both groups, DCS scores were low (16.3 ± 18.2 vs 16.8 ± 17, P = .97) and Preparedness for Decision Making scores were high (73.4 ± 28.3 vs 70.5 ± 31.1, P = .33). There was a significantly greater knowledge score in the decision aid group (66.2 ± 18.5 vs 57.2 ± 18.8, P = .005). Most clinicians and parents found the decision aid useful. CONCLUSIONS: For parents facing extremely premature delivery, use of a decision aid did not impact maternal decisional conflict, but it significantly improved knowledge of complex information. A structured decision aid may improve comprehension of complex information. TRIAL REGISTRATION: Clinicaltrials.gov: NCT01713894.

Population-Based Outcomes Data for Counseling at the Margin of Gestational Viability.

OBJECTIVE: To survey neonatologists as to how many use population-based outcomes data to counsel families before and after the birth of 22- to 25-week preterm infants. STUDY DESIGN: An anonymous online survey was distributed to 1022 neonatologists in the US. Questions addressed the use of population-based outcome data in prenatal and postnatal counseling. RESULTS: Ninety-one percent of neonatologists reported using population-based outcomes data for counseling. The National Institute of Child Health and Human Development Neonatal Research Network Outcomes Data is most commonly used (65%) with institutional databases (14.5%) the second choice. Most participants (89%) reported that these data influence their counseling, but it was less clear whether specific estimates of mortality and morbidity influenced families; 36% of neonatologist felt that these data have little or no impact on families. Seventy-one percent reported that outcomes data estimates confirmed their own predictions, but among those who reported having their assumptions challenged, most had previously been overly pessimistic. Participants place a high value on gestational age and family preference in counseling; however, among neonatologists in high-volume centers, the presence of fetal complications was also reported to be an important factor. A large portion of respondents reported using prenatal population-based outcomes data in the neonatal intensive care unit. CONCLUSION: Despite uncertainty about their value and impact, neonatologists use population-based outcomes data and provide specific estimates of survival and morbidity in consultation before and after extremely preterm birth. How best to integrate these data into comprehensive, family-centered counseling of infants at the margin of viability is an important area of further study.

Perinatal Decision Making for Preterm Infants with Congenital Heart Disease: Determinable Risk Factors for Mortality.

For premature infants with congenital heart disease (CHD), it may be unclear when the burdens of treatment outweigh potential benefits. Parents may thus have to choose between comfort care at birth and medical stabilization until surgical repair is feasible. Better defined outcome data, including risk factors for mortality, are needed to counsel expectant parents who are considering intensive care for premature infants with CHD. We sought to evaluate outcomes in this population to inform expectant parents considering intensive versus palliative care at birth. We performed a retrospective cohort study of infants born <34 weeks who received intensive care with critical or moderately severe CHD predicted to require surgery in the neonatal period or the first 6 months of life. 46 % of 54 infants survived. Among non-survivors, 74 % died prior to surgery (median age 24 days). Of the infants that underwent surgery, 75 % survived. Survival was lower among infants <32 weeks gestational age (GA) (p = 0.013), with birth weight (BW) <1500 g (p = 0.011), or with extra-cardiac anomalies (ECA) (p = 0.015). GA and ECA remained significant risk factors for mortality in multiple logistic regression analysis. In summary, GA < 32 weeks, BW < 1500 g, and ECA are determinable prenatally and were significant risk factors for mortality. The majority of infants who survived to cardiac intervention survived neonatal hospitalization, whereas most of the infants who died did so prior to surgery. For some expectant parents, this early declaration of mortality may support a trial of intensive care while avoiding burdensome interventions.

Resident Attitudes on Ethical and Medical Decision-Making for Neonates at the Limit of Viability.

OBJECTIVE: This study aims to identify pediatric resident knowledge and attitudes on current practices and ideal gestational age (GA) thresholds for offering and mandating resuscitation, and the role of influencing factors in decision-making. STUDY DESIGN: Pediatric residents were assessed via electronic survey at a large academic institution. RESULT: A total of 62% of the residents identified 23 weeks as the lower threshold for resuscitation, despite 84 and 89% reporting that practices are inconsistent and unclear, respectively. Only 21% identified 24 weeks as the latest GA that parents may decline. The majority disagreed with our current practices, identifying older GA as appropriate for all thresholds. They reported scientific evidence as undervalued, and attending physicians' personal beliefs as overvalued in decision-making. CONCLUSION: Our residents recognize decision-making for extremely preterm infants consistent with general guidelines for management based on population outcomes, but attribute these decisions to physicians' personal beliefs. Preferences for higher GA thresholds for resuscitation may reflect disproportionate pessimism about these patients or diverse values regarding autonomy.

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.

Ethics of age de-escalation in pediatric vaccine trials: Attending to the case of COVID-19.

In the development of new vaccines, many trials use age de-escalation: after establishing safety and efficacy in adult populations, progressively younger cohorts are enrolled and studied. Age de-escalation promotes many values. The responsibility to protect children from potential risks of experimental vaccines is significant, not only given increased risks of adverse effects but also because parents and medical professionals have a moral responsibility to protect children from harms associated with novel, uncertain interventions. Further, given that young children cannot provide informed consent, acceptable risks for research requiring proxy consent are lower than for adults making decisions for themselves. Although age de-escalation approaches are widely used in vaccine trials, including notably in the recent development of pediatric COVID-19 vaccines, ethicists have not addressed the benefits and risks of these approaches. Their benefits are largely assumed and unstated, while their potential risks are usually overlooked. There are no official ethics guidelines for the use of age de-escalation in clinical research. In this paper, we provide a systematic account of key moral factors to consider when employing age de-escalation. Analyzing pediatric COVID-19 vaccine development as our key case study, we clarify the benefits, risks, and trade-offs involved in age de-escalation approaches and call for the development of evidence-based best practice guidelines to identify when age de-escalation is likely to be an ethical strategy in vaccine development.