Bree Andrews

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.

Trends and challenges in United States neonatal intensive care units follow-up clinics

Objective:A mandate exists that all level III neonatal intensive care units (NICUs) provide a means to assess and follow their high-risk neonates after discharge. However, no standardized guidelines exist for the follow-up services provided. To determine trends of structure and care provided in NICU follow-up clinics in both the academic and private clinical setting.Study Design:We sent an Internet survey to NICU follow-up clinic directors at both academically affiliated and private centers. This study received institutional review board exemption.Result:We received 89 surveys from academic institutions and 94 from private level III follow-up programs. These responses represent 55% of academic programs and 40% of private programs in the United States. Similar to academic institutions, 18% of private NICU follow-up clinics provide primary care services to patients. In both settings, the hospital supports 60% of the funding required for clinic activities. Forty-five percent of NICU graduates seen in both private and academic follow-up clinics have public aid as their primary insurance. Eighty-five percent of NICUs in both settings have guidelines outlining requirements for referrals to the follow-up clinic. Academic programs find feeding difficulties the most difficult, whereas private programs find bronchopulmonary dysplasia and feeding difficulties equally as difficult.Conclusion:The care and struggles of NICU follow-up clinics are similar in both the academic affiliated and private settings. Similar referrals, clinical evaluation and medical care occur with varying struggles.

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.

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.

Opportunities and difficulties for counseling at the margins of viability

At the margins of viability, the interaction between physicians and families presents challenges but also opportunities for success. The counseling team often focuses on data: morbidity and mortality statistics and the course of a typical infant in the neonatal intensive care unit. Data that are generated on the population level can be difficult to align with the multiple facets of an individual infants trajectory. It is also information that can be difficult to present because of framing biases and the complexities of intuiting statistical information on a personal level. Families also do not arrive as a blank slate but rather arrive with notions of prematurity generated from the culture they live in. Mothers and fathers often want to focus on hope, their changing role as parents, and in their desire to be a family. Multi-timepoint counseling provides the opportunity to address these goals and continue communication as the trajectories of infants, families and the counseling team change.