Joanne Lagatta

Just, in Time: Ethical Implications of Serial Predictions of Death and Morbidity for Ventilated Premature Infants

OBJECTIVES. For a cohort of extremely premature, ventilated, newborn infants, we determined the power of either serial caretaker intuitions of “die before discharge” or serial illness severity scores to predict the outcomes of death in the NICU or neurologic performance at corrected age of 2 years. METHODS. We identified 268 premature infants who were admitted to our NICU in 1999–2004 and required mechanical ventilation. For each infant on each day of mechanical ventilation, we asked nurses, residents, fellows, and attending physicians the following question: “Do you think this child is going to live to go home or die before hospital discharge?” In addition, we calculated illness severity scores until either death or extubation. RESULTS. A total of 17066 intuition profiles were obtained on 5609 days of mechanical ventilation in the NICU. One hundred (37%) of 268 profiled infants had ≥1 intuition of die before discharge. Only 33 infants (33%) with an intuition of die actually died in the NICU. Of 48 infants with even 1 day of corroborated intuition of die in the NICU, only 7 (14%) were alive with both Mental Developmental Index and Psychomotor Developmental Index scores of >69, and only 2 (4%) were alive with both Mental Developmental Index and Psychomotor Developmental Index Scores of >79 at corrected age of 2 years. On day of life 1, the Score for Neonatal Acute Physiology II value for nonsurvivors (38.2 ± 18.1) was significantly higher than that for survivors (26.3 ± 12.7). However, this difference decreased steadily over time as scores improved for both groups. CONCLUSIONS. Illness severity scores become progressively less helpful over time in distinguishing infants who will either die in the NICU or survive with low Mental Developmental Index/Psychomotor Developmental Index scores. Serial caretaker intuitions of die before discharge also fail to identify prospective nonsurviving infants. However, corroborated intuitions of die before discharge identify a subset of infants whose likelihood of surviving to 2 years with both MDI and PDI >80 is approximately 4%.

Whom are we comforting? An analysis of comfort medications delivered to dying neonates.

OBJECTIVES To clarify the use of end-of-life comfort medications or neuromuscular blockers (NMBs) 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 or the NICU during 12 months in four NICUs (Chicago, Milwaukee, Montreal, and Groningen). We compared use of end-of-life comfort medications and NMBs. RESULTS None of the babies who died in the delivery room received comfort medications. The use of opiods (77%) or benzodiazepines (41%) around death was similar in all NICUs. Increasing this medication around extubation occurred most often in Montreal, rarely in Milwaukee and Groningen, and never in Chicago. Comfort medications use had no significant impact on the time between extubation and death. NMBs were never used around death in Chicago, once in Montreal, and more frequently in Milwaukee and Groningen. Initiation of NMB after extubation occurred only in Groningen. CONCLUSION Comfort medications were administered to almost all dying infants in each NICU. Some, but not all, centers were comfortable increasing these medications around or after extubation. In three centers, NMBs were at times present at the time of death. However, only in Holland were NMBs initiated after extubation.

The Mathematics of Morality for Neonatal Resuscitation

This article discusses the ethical issues surrounding the resuscitation of infants who are at great risk to die or survive with significant morbidity. Data are introduced regarding money, outcomes, and prediction. Gestational age influences some of the outcomes after birth more than others do. Prediction is possible at four stages of the resuscitation process. Data suggest that antenatal and delivery room predictions are inadequate, and prediction at the time of discharge is too late. The predictive value (>95%) for the outcome of death or survival with neurodevelopmental impairment is discussed.

The nonimpact of gestational age on neurodevelopmental outcome for ventilated survivors born at 23-28 weeks of gestation.

Aim:  It has long been known that survival of preterm infants strongly depends upon birth weight and gestational age. This study addresses a different question – whether the gestational maturity improves neurodevelopmental outcomes for ventilated infants born at 23–28 weeks who survive to neonatal intensive care unit (NICU) discharge.

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.

The association between 5-min Apgar score and mortality disappears after 24 h at the borderline of viability

Aim:  To quantify the relationship between 5‐min Apgar scores and infant mortality for infants at the borderline of viability.

The prediction and cost of futility in the NICU.

Aim:  To quantify the cost and prediction of futile care in the Neonatal Intensive Care Unit (NICU).

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.

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.

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.