Length of life and treatment intensity in infants diagnosed prenatally or postnatally with congenital anomalies considered to be lethal

Abstract

Objectives: The objectives of this study were (1) to compare age at death and the intensity and cost of medical treatment for infants diagnosed prenatally or postnatally with congenital anomalies considered to be lethal.(2) To determine whether greater treatment intensity is associated with longer life.Study Design: This is a retrospective cohort study of all fetuses and neonates with congenital anomalies classified as lethal who were diagnosed or treated at the University of North Carolina Hospitals from January 1998 to December 2003. Result:The cohort consisted of 192 fetuses and infants: 160 were diagnosed prenatally, 2 were diagnosed perinatally, and 30 were diagnosed postnatally. In all, 115 (72%) pregnancies were terminated. Of the liveborn infants, 75% died before 10 days of age and 90% before 4 months of age. Compared with postnatally diagnosed infants, prenatally diagnosed infants received less intense treatment (median average daily Neonatal Therapeutic Intervention Scoring System score 8.3 versus 14.0; P ¼ 0.02), at less cost (median direct cost of hospitalization $1550 versus $8474; P ¼ 0.03) and died sooner (median age at death <1 day versus 4 days; P ¼ 0.01). Greater treatment intensity did not correlate with longer survival (r ¼ À0.04; P ¼ 0.66). Conclusion:Although some kinds of medical therapy may be appropriate for newborns with lethal congenital anomalies, highly aggressive interventions did not prolong survival and should not be offered. Even when pregnancy termination is not elected, infants diagnosed prenatally receive less intense care.

Erring on the Side of Life: Children with Rare Trisomy Conditions, Medical Interventions and Quality of Life

“…In addition, at the present time, there is very little literature on developmental outcomes [20,21]. This further impacts and reinforces the prevailing view that focuses on a limited quality of life and arguments against aggressive care [11][12][13]15]. There must be a move toward valuation of life and corresponding provision of treatment and examination of developmental gains rather than limited intervention or palliative care for infants with "lethal" or "severe" fetal abnormalities.…”

“…Writers in the areas of palliative care and bioethics largely recommend limited medical intervention or only the provision of comfort care for this population [12][13][14][15][16].…”

Lethality begets lethality

“…He points to two recent case series where 25 to 44% of infants with Trisomy 13 and 18 survived for more than a year when treated aggressively, far above the 15% cutoff we employed in our definition. However, one of those series included only nine patients, 1 and the other consisted of neonates referred to a tertiary center for ongoing care after birth, indicating that their population was enriched for neonates who survived long enough to transfer. 2 Without data on the intensity of medical treatment and survival of the neonates who were not transferred, the unusually high survival rate at 1 year was likely due to selection bias rather than contemporary medical intervention.…”

“…Courtwright et al 1 report that the diagnosis of 'lethal' conditions prenatally leads to care that is less intense, lower cost and of similar survival benefit when compared with postnatally diagnosed cases. Based on these results, the authors conclude that 'highly aggressive interventions did not prolong survival in these cases and should not be offered.'…”

What If the Prenatal Diagnosis of a Lethal Anomaly Turns Out to Be Wrong?

“…Because aggressive treatment was not associated with prolonged survival, the authors concluded that it should not be offered. 7 This is a classic self-fulfilling prophecy. It is hard to know what the mortality rate would be with treatment if current outcome statistics are based on cohorts in which many affected infants die after termination of pregnancy and another large number of infants receive palliative care after birth.…”