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.

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.

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.

Should Neonatologists Give Opinions Withdrawing Life-sustaining Treatment?

An infant has a massive intracranial hemorrhage. She is neurologically devastated and ventilator-dependent. The prognosis for pulmonary or neurologic recovery is bleak. The physicians and parents face a choice: withdraw the ventilator and allow her to die or perform a tracheotomy? The parents cling to hope for recovery. The physician must decide how blunt to be in communicating his own opinions and recommendations. Should the physician try to give just the facts? Or should he also make a recommendation based on his own values? In this article, experts in neonatology, decision-making, and bioethics discuss this situation and the choice that the physician faces.

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 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.