Parents Attitudes Regarding the Appropriateness of the Support Provided and the Decision Making Process for Their Borderline Viable Infant † 1074

Abstract

We surveyed parents attitudes about the level of support provided to their borderline viable baby in the delivery room and NICU and how these decisions were made. Surveys were sent to parents of all livebirths born at our hospital from 1990 through 1995 at 23-25 wks of gestation. All babies were initially provided respiratory support in the delivery room and 140/142 were intubated. If the baby survived the delivery room and neonatal intensive care was initiated, consideration for withdrawing support was presented to the parents when the attending neonatologists considered the prognosis hopeless. Separate surveys were sent to each parent at least 1 year after the death of discharge of their baby. Sixty-eight surveys (40 mothers, 28 fathers) were returned representing 40 babies. The birthweight, gestational age, and rate of major morbidities were similar for babies whose parents returned surveys compared with those who did not, however, survival was higher for the group returning the surveys (78% vs 57%; p<.022). There were no differences in responses from the 18 parents whose babies died and the 50 parents whose babies survived so the results were combined. 63% of parents recalled speaking with a neonatologist prior to delivery and all considered it helpful. 97% of parents agreed with the decision for their baby to have been initially supported in the delivery room. 30% of parents recalled a discussion concerning discontinuing support in the NICU, and 95% of these parents were satisfied with the way the subject was addressed. For the parents who did not recall a discussion about discontinuing support, 28% thought it should have been discussed. Overall, 82% of parents agreed with the decision making process, 6% were noncommittal, and 12% disagreed. Those who disagreed generally wanted to be provided with more information during the hospital stay.Conclusion - When surveyed later, parents of borderline viable infants whose babies were aggressively supported in the delivery room almost universally agree with this decision. However, more parents thought a discussion regarding discontinuing support should have taken place than had to be done.