Counseling Pregnant Women Who May Deliver Extremely Premature Infants: Medical Care Guidelines, Family Choices, and Neonatal Outcomes

OBJECTIVES. The justification of neonatal intensive care for extremely premature infants is contentious and of considerable importance. The goal of this report is to describe our experience implementing consensus medical staff guidelines used for counseling pregnant women threatening extremely premature birth between 220/7 and 266/7 weeks' postmenstrual age and to give an account of family preferences and the immediate outcome of their infants. METHODS. Retrospective chart review was performed for all women threatening premature birth between 220/7 and 266/7 weeks postmenstrual age who presented to our high-risk obstetric service between June 2003 and December 2006. Women participated in comprehensive periviability counseling, which featured our specific obstetric and neonatology care recommendations for them and their infant at each gestational week. A subset of women were approached to obtain consent for a 2-step interview process beginning 3 days after the initial periviability counseling and followed with a 6- to 18-month assessment. RESULTS. Two hundred sixty women were identified as eligible subjects. After periviability counseling, but before any birth, palliative comfort care was requested by a higher percentage of families at each decreasing week. Ninety-five of the 260 women delivered 121 infants at < 27 weeks' postmenstrual age. At delivery, at the request of the families and with the agreement of the medical staff, the following proportions of these infants were provided palliative comfort care: 100% at 22 weeks, 61% at 23 weeks, 38% at 24 weeks, 17% at 25 weeks, and 0% at 26 weeks. All nonresuscitations and comfort care measures were supported by the medical and nursing staffs, and all infant deaths occurred within 171 minutes. Fifty women consented to a postcounseling interview, and 25 of them also participated in a follow-up interview 6 to 18 months later. The counseling process and the guidelines were viewed as highly understandable, useful, consistent, and done in a comfortable manner. The tone and content of the parental comments regarding the counseling process were very positive, even more so at the later interview. There were no complaints or negative comments regarding the counseling process or the infant outcomes. CONCLUSIONS. Rational, consensus periviability guidelines are well accepted and can be used by all neonatologists, obstetricians, and nurses who provide care to pregnant women and infants at extremely early gestational ages. Pregnant women see these guidelines as highly understandable, useful, consistent, and respectful. When encouraged to participate with attending staff in discussions involving morbidity and mortality outcomes of premature infants and consensus medical practice recommendations, a substantial proportion of parents will choose palliative comfort care for their extremely premature infant up through 256/7 weeks' postmenstrual age. We believe the choice of neonatal intensive care versus palliative comfort care in extremely premature infants rightfully belongs to medically informed parents. More research is needed to examine how these decisions are made under diverse conditions of culture, religion, and technology. Pediatrics 2009; 123: 1509-1515