Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor.

OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible neonates at 2 institutions underwent audiotaped, semistructured interviews while their infants were still in the hospital and then again 6 months to 1 year after discharge or death. Interviews were transcribed and data were analyzed using thematic analysis. Two authors independently reviewed and coded each interview and discrepancies were resolved by consensus. RESULTS: Twenty-six families were interviewed in the initial group and 17 families were interviewed in the follow-up group. The most common themes identified included realism about death (24 families), appreciation for the infant's care team (23 families), and optimism and hope (22 families). Overall themes were very similar across both centers, and among parents of infants who died and those who survived. Themes of regret, futility, distrust of care team, and infant pain were brought up infrequently or not at all. CONCLUSIONS: No family believed that the care being provided to their infant was futile; rather, parents were grateful for the care provided to their infant, regardless of outcome. Even in the case of a poor prognosis or the death of an infant, families in our study viewed their infant's stay in the neonatal intensive care unit favorably.

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.

A Comparison of Prenatal and Postnatal Models to Predict Outcomes at the Border of Viability.

OBJECTIVE: To compare the accuracy of a prenatal outcomes calculator developed by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) with a postnatal neonatal intensive care unit (NICU) prediction model for mechanically ventilated infants. STUDY DESIGN: Over a 3-year period, we identified 89 ventilated infants born in our NICU between 23 and 25 weeks gestation. We retrospectively determined the predicted morbidity and mortality for each infant using the prenatal NICHD Neonatal Research Network: Extremely Preterm Birth Outcome Data website calculator. For our postnatal prediction model, we assessed 2 factors while each infant was on mechanical ventilation: daily intuitions about whether the infant would die before NICU discharge and abnormal head ultrasound. We compared the prenatal and postnatal models for predicting outcomes at 2 years adjusted age. RESULTS: Of the 89 infants, 54 (61%) died or had neurologic developmental impairment (NDI) and 35 (39%) survived without NDI. The NICHD Neonatal Research Network: Extremely Preterm Birth Outcome Data website calculator predicted that 61 (69%) would either die or have NDI and that 28 (31%) would survive without NDI. Positive clinicians' intuitions about survival combined with normal head ultrasound scan results during a trial of therapy in the NICU predicted a 30% greater chance for survival without NDI than the prenatal tool. CONCLUSIONS: When infants at the border of viability are born and cared for in the NICU, they move from predictions for population-based outcomes into predictions based on individual trajectories and outcomes. A clinical trial of therapy provides additional prognostic information that can guide parental decisions made near the time of birth.

Beyond stress: describing the experiences of families during neonatal intensive care.

AIM: To determine whether parents of critically ill premature infants feel that neonatal intensive care unit (NICU) therapy is worthwhile, independent of their infant's outcome. METHODS: The parent(s) of ventilated infants in the NICU were interviewed. Prominent themes were identified within the text of transcribed interviews and the frequency of each theme tabulated. RESULTS: The parents of 10 infants were interviewed. All parents experienced stress and understood the uncertain future of their infants. Parents remained optimistic and uniformly expressed that NICU intervention was 'worth it'. No parent described concern about 'torture', 'cruelty' or 'futile care'. CONCLUSION: Although parents experience significant stress while their infant is in the NICU, their emotional experiences are much more broad. They feel confident in their decision to give their child a chance, a responsibility to be informed and to make the best decisions they can and remain hopeful for a good outcome regardless of their child's condition.

Power and limitations of daily prognostications of death in the medical ICU for outcomes in the following 6 months.

OBJECTIVES: We tested the power of clinicians' predictions that a medical ICU patient would "die before hospital discharge" for both survival to discharge and for outcomes at 6 months. DESIGN: We restricted our analyses to patients who had been in the medical ICU at least 72 hours and for whom we had follow-up at 6 months after medical ICU admission. For 350 medical ICU patients, on each medical ICU day, we asked their attending physician, fellow, resident, and primary nurse one question-"do you think this patient will die in hospital or survive to be discharged"? We correlated these responses with 6-month outcomes (death and/or Barthel score for survivors). RESULTS: We obtained over 6,000 predictions on 2,271 medical ICU patient-days. Of 350 medical ICU patients who stayed more than 72 hours, 143 patients (41%) had discordant predictions-that is, on the same medical ICU day, at least one provider predicted survival, whereas another predicted death before discharge. As we have shown previously, predictions of "death before discharge" were imperfect-only 104 of 187 of patients with a prediction of death (56%) actually died in hospital. However, this is the central finding of our study, and predictions of death before discharge were much more accurate for 6-month outcomes. Of 120 patients with a corroborated prediction of death before discharge (93%), 112 patients had died within 6 months of medical ICU discharge, and only 4% were functioning with a Barthel score more than 70. In contrast, 67 of 163 patients who did not have any prediction of death before discharge (41%) were alive with Barthel score more than 70 at 6 months. CONCLUSIONS: Fewer than 4% of medical ICU patients who required 72 hours of medical ICU care and had a corroborated prediction of death before discharge were alive at 6 months and functioning with a Barthel score more than 70.

National variability in neonatal resuscitation practices at the limit of viability.

OBJECTIVE: Delivery room management of extremely premature infants is not subjected to professional regulations. In the United States, legal definitions of human viability and statutes regulating elective abortions vary by state, placing providers in an often difficult position regarding whether to attempt resuscitation when faced with the delivery of an infant of 22 to 25 weeks gestation. The objective of this study was to delineate variations in delivery room resuscitation practices of periviable infants in the United States in 2012. STUDY DESIGN: Electronic survey was sent to the members of American Academy of Pediatrics Section of Perinatal Medicine. Chi-square, Fisher exact test, and multivariate logistic regression were performed. RESULTS: A total of 758 surveys returned out of which 637 were complete. Overall 68% of providers consider 23-week gestation to be the youngest age that should be resuscitated at parental request, while 25-week gestation is considered by 51% to be the youngest age of obligatory resuscitation even with parental refusal. Responses varied when providers were separated into geographical regions based on the U.S. Census Bureau (p < 0.05). When provided with delivery room scenarios, parental preference significantly affected resuscitation attempts of 22 to 25 weeks, but not 26-week infants. In scenarios of periviable elective terminations, providers' personal belief systems influenced management of aborted fetuses. CONCLUSIONS: Regional practice variation exists independent of specific state laws. Parental request is the most important factor to providers resuscitating 22 to 25-week infants. Providers' personal belief systems influence infant management infrequently.

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. METHODS: We performed a prospective cohort study of 199 ventilated infants born between 23 and 28 weeks of gestation. Neurodevelopmental impairment was determined using the Bayley Scales of Infant Development-II at 24 months. RESULTS: As expected, when considered as a ratio of all births, both survival and survival without neurodevelopmental impairment were strongly dependent on gestational age. However, the percentage of surviving infants who displayed neurodevelopmental impairment did not vary with gestational age for any level of neurodevelopmental impairment (MDI or PDI <50, <60, <70). Moreover, as a higher percentage of ventilated infants survived to NICU discharge at higher gestational ages, but the percentage of neurodevelopmental impairment in NICU survivors was unaffected by gestational age, the percentage of all ventilated births who survived with neurodevelopmental impairment rose - not fell - with increasing gestation age. CONCLUSION: For physicians, parents and policy-makers whose primary concern is the presence of neurodevelopmental impairment in infants who survive the NICU, reliance on gestational age appears to be misplaced.

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). METHODS: We observed 1813 infants on 100,000 NICU bed days between 1999 and 2008 at the University of Chicago. We determined costs and assessed predictions of futility for each day the infant required mechanical ventilation. RESULTS: Only 6% of NICU expenses were spent on nonsurvivors, and in this sense, they were futile. If only money spent after predictions of death is considered, futile expenses fell to 4.5%. NICU care was preferentially directed to survivors for even the smallest infants, at the highest risk to die. Over 75% of ventilated NICU infants were correctly predicted to survive on every day of ventilation by every caretaker. However, predictions of 'die before discharge' were wrong more than one time in three. Attendings and neonatology fellows tended to be optimistic, while nurses and neonatal nurse practitioners tended to be pessimistic. CONCLUSIONS: Criticisms of the expense of NICU care find little support in these data. Rather, NICU care is remarkably well targeted to patients who will survive, particularly when contrasted with care in adult ICUs. We continue to search for better prognostic tools for individual infants.

Power and limitations of daily prognostications of death in the medical intensive care unit.

OBJECTIVE: We tested the accuracy of predictions of impending death for medical intensive care unit patients, offered daily by their professional medical caretakers. DESIGN: For 560 medical intensive care unit patients, on each medical intensive care unit day, we asked their attending physicians, fellows, residents, and registered nurses one question: "Do you think this patient will die in the hospital or survive to be discharged?" RESULTS: We obtained>6,000 predictions on 2018 medical intensive care unit patient days. Seventy-five percent of MICU patients who stayed≥4 days had discordant predictions; that is, at least one caretaker predicted survival, whereas others predicted death before discharge. Only 107 of 206 (52%) patients with a prediction of "death before discharge" actually died in hospital. This number rose to 66% (96 of 145) for patients with 1 day of corroborated (i.e., >1) prediction of "death," and to 84% (79 of 94) with at least 1 unanimous day of predictions of death. However, although positive predictive value rose with increasingly stringent prediction criteria, sensitivity fell so that the area under the receiver-operator characteristic curve did not differ for single, corroborated, or unanimous predictions of death. Subsets of older (>65 yrs) and ventilated medical intensive care unit patients revealed parallel findings. CONCLUSIONS: 1) Roughly half of all medical intensive care unit patients predicted to die in hospital survived to discharge nonetheless. 2) More highly corroborated predictions had better predictive value; although, approximately 15% of patients survived unexpectedly, even when predicted to die by all medical caretakers.

Early neonatal intensive care unit therapy improves predictive power for the outcomes of ventilated extremely low birth weight infants.

OBJECTIVE: To assess the predictive value of early therapy for ventilated extremely low birth weight (ELBW) infants beyond information available at delivery. STUDY DESIGN: Prospective, single-center cohort analysis of 177 ventilated ELBW infants. We collected information known at delivery (gestational age, birth weight, singleton, sex, antenatal steroids) and additional information while infants were mechanically ventilated (head ultrasound scanning, clinician intuitions of death before discharge). An adverse outcome was defined as mortality or Bayley Mental Developmental Index or Psychomotor Developmental Index <70 at 2 years. We compared the predictive ability of clinical variables separately, in combination, and in addition to information available at delivery. RESULTS: A total of 77% of infants survived to follow-up; 56% of survivors had Bayley Mental Developmental Index and Psychomotor Developmental Index ≥ 70. A total of 95% of infants with both abnormal head ultrasound scanning results and predicted death before discharge had an adverse outcome, independent of gestational age. Conversely, 40% of infants with normal head ultrasound scanning results and no predicted death before discharge had an adverse outcome, independent of gestational age. After adjusting for variables known at birth, predicted death before discharge and abnormal head ultrasound scanning results added significantly to the ability to predict outcomes. CONCLUSION: Information gained early in the neonatal intensive care unit improves prediction of mortality or neurodevelopmental impairment in ventilated ELBW infants beyond information available in the delivery room.

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.

Should the "slow code" be resuscitated?

Most bioethicists and professional medical societies condemn the practice of "slow codes." The American College of Physicians ethics manual states, "Because it is deceptive, physicians or nurses should not perform half-hearted resuscitation efforts ('slow codes')." A leading textbook calls slow codes "dishonest, crass dissimulation, and unethical." A medical sociologist describes them as "deplorable, dishonest and inconsistent with established ethical principles." Nevertheless, we believe that slow codes may be appropriate and ethically defensible in situations in which cardiopulmonary resuscitation (CPR) is likely to be ineffective, the family decision makers understand and accept that death is inevitable, and those family members cannot bring themselves to consent or even assent to a do-not-resuscitate (DNR) order. In such cases, we argue, physicians may best serve both the patient and the family by having a carefully ambiguous discussion about end-of-life options and then providing resuscitation efforts that are less vigorous or prolonged than usual.

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.

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 infant's 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.

Epidemiology, economics, and ethics in the NICU: reflections from 30 years of neonatology practice.

Over the past 30 years, I have noted 4 epidemiological points, each of which, I believe, must inform future conversations between neonatal intensive care unit (NICU) physicians, parents, and policy makers. First, there are no credible arguments against NICU care that rely on invoking cost or distributive justice. NICU dollars are remarkably well targeted to children who will ultimately survive to be discharged, as opposed to die in the NICU. If any rationing arguments are to be made, then they should be directed against sick adults in intensive care units. Second, the vast majority of infants admitted to the NICU, even infants sick enough to require mechanical ventilation, will survive to be discharged home-and every caretaker knows this, every day. Again, these findings stand in sharp contrast to adult patients in intensive care, where discordant predictions of survival are the norm, not the exception. Third, medical caretakers are remarkably poor at predicting which infants will die in the NICU, using either serial illness severity algorithms or serial intuitions. Nearly half of all babies predicted to die in the NICU by either strategy will survive to be discharged nonetheless. Fourth, and finally, medical caretakers seem remarkably good at identifying burdensome outcomes (either death or survival with permanent serious neurological disability) while babies are still sick enough that an alternative (ie, withdrawal of the ventilator) is ethically possible. Only 5% of ventilated extremely low birth weight babies receiving ventilation who are predicted to die before NICU discharge will be alive and neurologically unscathed at 2 years of age.