Research has identified great potential for disparity in counseling and subsequent urgent decision making, on the part of parents and care givers at the time of birth versus impending loss, at gestational ages 22 0/7 to 26 6/7 weeks.

In a large, level III facility, in 2007, there were 82 live births in this gestational age group. Of that number, 70 survived to NICU admission. Morbidity was evaluated on three criteria, over a five year period (2003 to 2007).  Of 23 week infants, 38.5% survived to discharge, with an average length of stay (ALOS) of 98.8 days.  Of survivors 55% had severe intraventricular hemorrhage (IVH), 50% had severe retinopathy of prematurity (ROP), and 33% had chronic lung disease (CLD). Of 26 week infants, 91.1% survived to discharge, with an ALOS of 72.4 days. Of survivors 20.5% had severe IVH, 13.1% had severe ROP, and 24.6% had CLD. This information as well as national data should be available to patients, during a discussion, with a neonatologist (Peerzada, Richardson, Burns, 2004).

ACOG recommendations state that parents should be counseled regarding survival rates; these  increase from 0% at 21 weeks, to 75% at 25 weeks. Data specific to age, weight, and sex should be used to aid in management decisions (ACOG, 2002).  In addition to the science, the social and cultural values of the family are an important part of the decision making process (Lorenz, 2004).

At this facility, every patient, with a threat to the pregnancy from 20 weeks gestation, receives a neonatology consult. The family is given the opportunity to receive information about newborns at their child’s current gestational age and participate in the development of a plan for their child. Perinatology rounds provide information on management of the pregnancy at the current gestation (MacDonald, 2002). When an emergent situation arises however, there is often haphazard decision making. The family may be upset, and may take unintended cues from questions they are asked. They may react without consideration of what they have learned or what decisions they have previously made (Lorenz, 2003). They may feel that the emergency situation negates their previous decisions. The urgent manner of the caregivers may not empower the family as decision makers.

A team was formed to review deliveries of inpatients from the high risk perinatal unit. Care givers provided narrative of the decision making processes surrounding the delivery. Although documentation of a neonatology consult was on the chart and included a plan, new plans and rapid decisions were made. A need for improved communication was identified, as well as a need to assist the family and care givers, in using the information previously given. A form was designed to document family decisions regarding pregnancy outcome. This form is updated during perinatal rounds and is found in the advanced directives section of the chart. After an initial start up period, patient and staff satisfaction with the process will be solicited.