Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and The Netherlands.

OBJECTIVE: To clarify the process of end-of-life decision-making in culturally different neonatal intensive care units (NICUs). STUDY DESIGN: Review of medical files of newborns >22 weeks gestation who died in the delivery room (DR) or the NICU during 12 months in 4 NICUs (Chicago, Milwaukee, Montreal, and Groningen). We categorized deaths using a 2-by-2 matrix and determined whether mechanical ventilation was withdrawn/withheld and whether the child was dying despite ventilation or physiologically stable but extubated for neurological prognosis. RESULTS: Most unstable patients in all units died in their parents' arms after mechanical ventilation was withdrawn. In Milwaukee, Montreal, and Groningen, 4% to 12% of patients died while receiving cardiopulmonary resuscitation. This proportion was higher in Chicago (31%). Elective extubation for quality-of-life reasons never occurred in Chicago and occurred in 19% to 35% of deaths in the other units. The proportion of DR deaths in Milwaukee, Montreal, and Groningen was 16% to 22%. No DR deaths occurred in Chicago. CONCLUSIONS: Death in the NICU occurred differently within and between countries. Distinctive end-of-life decisions can be categorized separately by using a model with uniform definitions of withholding/withdrawing mechanical ventilation correlated with the patient's physiological condition. Cross-cultural comparison of end-of-life practice is feasible and important when comparing NICU outcomes.

Major anomalies and birth-weight influence NICU interventions and mortality in infants with trisomy 13 or 18.

OBJECTIVE: To describe neonatal intensive care unit (NICU) medical interventions and NICU mortality by birth weight and major anomaly types for infants with trisomy 13 (T13) or 18 (T18). STUDY DESIGN: Retrospective cohort analysis of infants with T13 or T18 from 2005 to 2012 in the Pediatrix Medical Group. We classified infants into three groups by associated anomaly type: neonatal surgical, non-neonatal surgical and minor. Outcomes were NICU medical interventions and mortality. RESULTS: 841 infants were included from 186 NICUs. NICU mortality varied widely by anomaly type and birth weight, from 70% of infants <1500 g with neonatal surgical anomalies to 31% of infants ⩾2500 g with minor anomalies. Infants ⩾1500 g without a neonatal surgical anomaly comprised 66% of infants admitted to the NICU; they had the lowest rates of NICU medical interventions and NICU mortality. CONCLUSIONS: Risk stratification by anomaly type and birth weight may help provide more accurate family counseling for infants with T13 and T18.

Inter-center variation in death or tracheostomy placement in infants with severe bronchopulmonary dysplasia.

OBJECTIVE: To estimate the presence and sources of inter-center variation (ICV) in the risk of death or tracheostomy placement (D/T) among infants with severe bronchopulmonary dysplasia (sBPD)Study design:We analyzed the Children's Hospitals Neonatal Database between 2010 and 2013 to identify referred infants born <32 weeks' gestation with sBPD. The association between center and the primary outcome of D/T was analyzed by multivariable modeling. Hypothesized diagnoses/practices were included to determine if these explained any observed ICV in D/T. RESULTS: D/T occurred in 280 (20%) of 1383 eligible infants from 21 centers. ICV was significant for D/T (range 2-46% by center, P<0.001) and tracheostomy placement (n=187, range 2-37%, P<0.001), but not death (n=93, range 0-19%, P=0.08). This association persisted in multivariable analysis (adjusted center-specific odds ratios for D/T varied 5.5-fold, P=0.009). CONCLUSIONS: ICV in D/T is apparent among infants with sBPD. These results highlight that the indications for tracheostomy (and subsequent chronic ventilation) remain uncertain.

Cost comparison of mechanically ventilated patients across the age span.

OBJECTIVE: To compare the use of mechanical ventilation and hospital costs across ventilated patients of all ages, preterm through adults, in a nationally representative sample. STUDY DESIGN: Secondary analysis of the 2009 Agency for Healthcare Research and Quality National Inpatient Sample. RESULTS: A total of 1 107 563 (2.8%) patients received mechanical ventilation. For surviving ventilated patients, median costs for infants ⩽32 weeks' gestation were $51000 to $209 000, whereas median costs for older patients were lower from $17 000 to $25 000. For non-surviving ventilated patients, median costs were $27 000 to $39 000 except at the extremes of age; the median cost was $10 000 for <24 week newborns and $14 000 for 91+ year adults. Newborns of all gestational ages had a disproportionate share of hospital costs relative to their total volume. CONCLUSION: Most intensive care unit resources at the extremes of age are not directed toward non-surviving patients. From a perinatal perspective, attention should be directed toward improving outcomes and reducing costs for all infants, not just at the earliest gestational ages.

Predicting death or tracheostomy placement in infants with severe bronchopulmonary dysplasia.

OBJECTIVE: To estimate the risk of death or tracheostomy placement (D/T) in infants with severe bronchopulmonary dysplasia (sBPD) born < 32 weeks' gestation referred to regional neonatal intensive care units. STUDY DESIGN: We conducted a retrospective cohort study in infants born < 32 weeks' gestation with sBPD in 2010-2011, using the Children's Hospital Neonatal Database. sBPD was defined as the need for FiO2 ⩾ 0.3, nasal cannula support >2 l min(-1) or positive pressure at 36 weeks' post menstrual age. The primary outcome was D/T before discharge. Predictors associated with D/T in bivariable analyses (P < 0.2) were used to develop a multivariable logistic regression equation using 80% of the cohort. This equation was validated in the remaining 20% of infants. RESULT: Of 793 eligible patients, the mean gestational age was 26 weeks' and the median age at referral was 6.4 weeks. D/T occurred in 20% of infants. Multivariable analysis showed that later gestational age at birth, later age at referral along with pulmonary management as the primary reason for referral, mechanical ventilation at the time of referral, clinically diagnosed pulmonary hypertension, systemic corticosteroids after referral and occurrence of a bloodstream infection after referral were each associated with D/T. The model performed well with validation (area under curve 0.86, goodness-of-fit χ(2), P = 0.66). CONCLUSION: Seven clinical variables predicted D/T in this large, contemporary cohort with sBPD. These results can be used to inform clinicians who counsel families of affected infants and to assist in the design of future prospective trials.

Variations among US hospitals in counseling practices regarding prematurely born infants.

OBJECTIVE: We studied several counselor-independent elements of prenatal counseling regarding prematurely born infants. Elements studied include: indications to offer counseling, clinical settings in which counseling is offered, personnel assigned to counsel, availability of tools to assist counseling and post-counseling documentation requirements. METHOD: As the study aimed to explore system-based practices and not counselor-based practices, we surveyed Neonatal Intensive Care Unit medical directors. RESULT: Responses were received from 352 hospitals (53%) in 47 states. Analysis was based on responses from the 337 hospitals that routinely counseled women anticipating a premature birth. In 299 (≈ 90%) hospitals, counseling was primarily performed by neonatal professionals. Premature labor was the most common indication to offer counseling; however, in 54 hospitals most counseling was offered before labor and based on maternal risk factors for preterm delivery. In nearly all (99.7%) hospitals information was provided verbally and face-to-face; a third of the hospitals also provided written information. For non-English-speaking Hispanic patients, 208 (62%) of the hospitals had certified hospital-based Spanish interpreters. Five (1%) hospitals provided specialized training to the designated prenatal counselors. The upper gestational age eligible for counseling at all 337 hospitals included 33 weeks; in 134 hospitals, gestational age of <23 weeks was not eligible for counseling. CONCLUSION: Antenatal parental counseling for premature delivery is a widely practiced intervention with substantial system-based variability in execution. Interventions and strategies known to improve overall counseling effectiveness are not commonly utilized. We speculate that guidelines and tool-kits supported by Pediatric and Obstetric professional organizations may help improve system-based practices.

Prenatal counseling beyond the threshold of viability.

OBJECTIVE: It is common clinical practice to counsel parents expecting an early-moderate premature birth. The aim of the current study was to assess maternal knowledge of potential problems of prematurity after counseling. STUDY DESIGN: Prospective study of 49 participants admitted between 23 and 33 weeks gestation with threatened premature birth; a prematurity knowledge questionnaire and the State-Trait Anxiety Inventory were administered after counseling but before delivery. RESULT: Across all gestational-ages, participants were more aware of short-term problems than long-term problems. With increasing gestational age the knowledge of long-term problems decreased (P=0.01). Maternal knowledge was 82% for gestational ages where clear guidelines exist regarding goal of counseling and information that should be provided to the parents. CONCLUSION: Most mothers of early-moderate premature infants are not aware of the potential for long-term problems. Guidelines, which outline the information that should be provided to parents, may improve maternal knowledge after counseling.