Life Support Decisions for Extremely Premature Infants: Report of a Pilot Study

The purpose of this pilot study was to describe decision making and the decision support needs of parents, physicians, and nurses regarding life support decisions made over time prenatally and postnatally for extremely premature infants. Using the collective case study method, one prenatal, one postnatal, and one postdeath, if the infant had died, tape-recorded interviews were conducted with each parent. With parents' permission, prenatal interviews were done with the physicians and nurses who talked to them about life support decisions for their infants. Twenty-five tape-recorded interviews were conducted with six cases (six mothers, two fathers, six physicians, and two nurses). Hospital records were reviewed for documentation of life support decisions. Results of this pilot study demonstrated that most parents wanted a model of shared decision making and perceived that they were informed and involved in making decisions. Parents felt that to be involved in decision making they needed information and recommendations from physicians. Parents also stressed the importance of encouragement and hope. In contrast, physicians informed parents but most physicians felt that parents were the decision makers. Physicians used parameters to offer options or involve parents in decisions and became very directive at certain gestational ages. Nurses reported that they believed that parents needed information from the physician first, then they would reinforce information. The results of this study offer an initial understanding of the decision support needs of parents.