Who tells a mother her baby has died? Communication and staff presence during stillbirth delivery and early infant death.

OBJECTIVE: Perinatal loss (stillbirth or early infant death) is often a sudden, unexpected event for families. We evaluated who communicates the loss to the parents and who is there for support at the delivery or death. STUDY DESIGN: We conducted a mail survey of 900 bereaved and 500 live-birth mothers to assess emotional, physical and reproductive health outcomes. RESULTS: We had a 44% response rate at 9 months after birth or loss from 377 bereaved mothers and 232 with surviving infants. Bereaved women were less likely to have hospital staff or family members present at delivery. African-American (versus Caucasian) mothers were half as likely to have first heard about their stillbirth from a physician or midwife. CONCLUSION: This is the first large study documenting who communicates perinatal death to families and who is present for support. Hospitals should be aware that many bereaved families may lack support at critical times.

International variations in application of the best-interest standard across the age spectrum.

OBJECTIVE: Ethically and legally, assertions that resuscitation is in a patient's best interest should be inversely correlated with willingness to forego intensive care (and accept comfort care) at the surrogate's request. Previous single country studies have demonstrated a relative devaluation of neonates when compared with other critically ill patients. STUDY DESIGN: In this international study, physicians in Argentina, Australia, Canada, Ireland, The Netherlands, Norway and the United States were presented with eight hypothetical vignettes of incompetent critically ill patients of different ages. They were asked to make assessments about best interest, respect for surrogate autonomy and to rank the patients in a triage scenario. RESULTS: In total, 2237 physicians responded (average response rate 61%). In all countries and scenarios, participants did not accept to withhold resuscitation if they estimated it was in the patient's best interest, except for scenarios involving neonates. Young children (other than neonates) were given high priority for resuscitation, regardless of existing disability. For neonates, surrogate autonomy outweighed assessment of best interest. In all countries, a 2-month-old-infant with meningitis and a multiply disabled 7-year old were resuscitated first in the triage scenario, with more variable ranking of the two neonates, which were ranked below patients with considerably worse prognosis. CONCLUSIONS: The value placed on the life of newborns is less than that expected according to predicted clinical outcomes and current legal and ethical theory relative to best interests. Value assessments on the basis of age, disability and prognosis appear to transcend culture, politics and religion in this domain.

Prognostic accuracy of antenatal neonatology consultation.

OBJECTIVE: Neonatologists provide antenatal counseling to support shared decision-making for complicated pregnancies. Poor or ambiguous prognostication can lead to inappropriate treatment and parental distress. We sought to evaluate the accuracy of antenatal prognosticaltion. STUDY DESIGN: A retrospective cohort was assembled from a prospectively populated database of all outpatient neonatology consultations. On the basis of the written consultation, fetuses were characterized by diagnosis groups (multiple anomalies or genetic disorders, single major anomaly and obstetric complications), assigned to five prognostic categories (I=survivable, IIA=uncertain but likely survivable, II=uncertain, IIB=uncertain but likely non-survivable, III non-survivable) and two final outcome categories (fetal demise/in-hospital neonatal death or survival to hospital discharge). When possible, status at last follow-up was recorded for those discharged from the hospital. Prognostic accuracy was assessed using unweighted, multi-level likelihood ratios (LRs). RESULTS: The final cohort included 143 fetuses/infants distributed nearly evenly among the three diagnosis groups. Over half (64%) were assigned an uncertain prognosis, but most of these could be divided into 'likely survivable' or 'likely non-survivable' subgroups. Overall survival for the entire cohort was 62% (89/143). All but one of the fetuses assigned a non-survivable prognosis suffered fetal demise or died before hospital discharge. The neonatologist's antenatal prognosis accurately predicted the probability of survival by prognosis group (LR I=4.56, LR IIA=10.53, LR II=4.71, LR IIB=0.099, LR III=0.040). The LRs clearly differentiated between fetuses with high and low probability of survival. Eleven fetuses (7.7%) had misalignment between the predicted prognosis and outcome. Five died before discharge despite being given category I or IIA prognoses, whereas six infants with category IIB or III prognoses survived to discharge, though some of these were discharged to hospice care. CONCLUSIONS: The neonatologist's antenatal prognosis accurately predicted fetal-neonatal outcome. Infants with non-survivable or uncertain but likely poor prognoses had a very low probability of survival, whereas those with good or uncertain prognoses had a high probability of survival. There were few cases of prognostic failure with most occurring in fetuses with one major or multiple anomalies. The few cases of prognostic failure suggest a need for caution. Honest disclosure of prognostic uncertainty and shared decision-making with families utilizing their personal values is critical in the antenatal encounter.

Severe congenital anomalies of the kidney and urinary tract: epidemiology can inform ethical decision-making.

OBJECTIVE: Decision-making for pregnancies complicated by severe congenital anomalies of the kidneys and urinary tract (CAKUT) are ethically challenging, partly because the outcomes are not well studied. STUDY DESIGN: Retrospective cohort study of severe cases of CAKUT over 14 years. RESULTS: Seventy-one of the 108 cases could be completely analyzed. Forty-six percent (n=33) infants were live-born; one-third (n=11) survived to 12 months. Twice as many non-surviving infants received a trial of therapy vs comfort care only. Two-thirds of non-survivors who received a trial of therapy died within the first 9 h of life. Live-born infants faced morbidities such as pneumothorax and neonatal dialysis. CONCLUSIONS: Over half of pregnancies complicated by severe CAKUT ended in termination or stillbirth, but one-third of live-born infants survived to 12 months and the majority of non-survivors died within hours. This may allay concerns about prolonged and futile intensive care for parents considering a trial of therapy.

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.