A Model Program for Perinatal Palliative Services :

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 22 and 26 weeks' postmenstrual age and to give an account of family preferences and the immediate outcome of their infants. Retrospective chart review was performed for all women threatening premature birth between 22 and 26 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. 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. 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 25 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.

Diagnosis of lethal fetal abnormality raises challenging decisions for parents and clinicians. Most parents opt for termination, which may include feticide. Advances in imaging seem unlikely to lead to earlier diagnoses. Perinatal palliative care offers an alternative. Parental decision making and the clinical aspects of perinatal palliative care were studied after a prenatal diagnosis of lethal fetal abnormality in 20 pregnancies. 40% of parents chose to continue the pregnancy and pursue perinatal palliative care. Six of these eight babies were liveborn and lived for between 1(1/2) h and 3 weeks.

In the United States the majority of infants who die in the first 27 days end their lives in the neonatal intensive care unit (NICU). This article describes the implementation of a NICU-based team approach to providing end-of-life care to dying infants and their families. Timeline, activities, and resultant improvements in family care and staff support are described. Moral distress among nurses caring for dying infants is discussed. A case study, neonatal palliative care policy, palliative care pathway, and lactation suppression guidelines for mothers following infant death are presented. More research is needed to verify improvements in neonatal, family, and staff support with palliative care programs in the NICU.