Objective: The aim of this study was to characterize parental decision-making regarding delivery room resuscitation for infants born extremely prematurely or with potentially lethal congenital anomalies.
Methods: This was a qualitative multicenter study. We identified English-speaking parents at 3 hospitals whose infants had died as a result of extreme prematurity or lethal congenital anomalies in 1999-2005. Parents were interviewed about their prenatal decision-making. Maternal medical charts were reviewed for documented discussions regarding delivery room resuscitation. Subject enrollment was stopped when saturation of themes was achieved.
Results: Twenty-six mothers of infants were interviewed. All parents wanted to participate to some degree in decisions regarding delivery room resuscitation. Few parents recalled discussing options for delivery room resuscitation with physicians, and even fewer recalled being offered the option of comfort care, even when these discussions were documented in the medical chart. Parents did not report physicians' predictions of morbidity and death to be central to their decision-making. Religion, spirituality, and hope guided decision-making for most parents. Some parents felt that they had not made any decisions regarding resuscitation and instead "left things in God's hands." These parents typically were documented by staff members to "want everything done."
Conclusions: The values that parents find most important during decision-making regarding delivery room resuscitation may not be addressed routinely in prenatal counseling. Parents and physicians may have different interpretations of what is discussed and what decisions are made. Future work should investigate whether physicians can be trained to address effectively parents' values during the decision-making process and whether addressing these values may improve physician-parent communication and lead to better postdecision outcomes for parents.