By Diane Swanbrow
News and Information Services
Disagreements among doctors, nurses and parents about the future of the sickest newborns in the nation’s intensive care nurseries are common, according to a
U-M sociologist.
In 41 percent of the 75 cases studied by Prof. Renee R. Anspach, doctors, nurses or parents disagreed about whether babies should be treated actively. Anspach is the author of Deciding Who Lives: Fateful Choices in the Intensive-Care Nursery, published by the University of California Press.
Each year, more than 200,000 infants—about 6 percent of the live births in the United States—are sick enough to need intensive care. “Most of those babies survive, go home and do well,” Anspach says. “The babies in this book do not. They’re the ones who may be terminally ill, or who, if they do survive, often live out their lives with serious mental or physical disabilities.
“And they’re the ones whose costly care—approaching $3 billion a year—poses the hard question of whether what can be done should always be done.”
For the book, Anspach observed and interviewed doctors, nurses and parents in two neonatal intensive care units over 16 months. She found that sometimes the parents disagreed with each other about what to do, with the fathers often insisting that their baby be actively treated while the mothers—more acutely aware of the consequences of raising a disabled child—were more likely to be ambivalent or hesitant.
“When babies were transferred to the nursery from other hospitals, life-and-death decisions sometimes needed to be made while the mother was still hospitalized elsewhere,” Anspach says. “So the father assumed most responsibility for making the decision. Ironically, the parent who had to bear most of the daily consequences of the decision—the mother—had the least authority in life-and-death decisions.”
Anspach also found that professionals usually tried to avoid overt conflict with parents. “Often, the parents were not asked directly about whether their baby should live or die,” she says. “Instead the medical staff used strategies to get parents to agree to decisions professionals had already made.
“Many staff members believed that allowing parents to participate in life-and-death decisions was unfair and would make the parents feel guilty. In fact, what we know about the social psychology of decision-making suggests that those parents who make a fully informed choice and are given time to weigh the alternatives are less, rather than more, likely to feel guilty afterwards.”
Another pattern Anspach identified was persistent tensions between doctors and nurses, who often formed different opinions about how well babies were likely to do, with doctors more likely than nurses to predict positive outcomes.
This disagreement, Anspach found, was linked to the different daily work experiences of doctors and nurses, who used different types of evidence to support their opinions. “Physicians, who had limited daily contact with babies, were more likely to base their predictions about infants on ‘hard’ data acquired with sophisticated measurement instruments such as brain scans,” notes Anspach.
“Nurses, who had close and continuous contact with babies, were much more likely to base their predictions on subtle cues, such as the baby’s overall responsiveness and ability to make eye contact.” Of 28 physicians Anspach observed, only three mentioned this type of cue, compared with 16 of 27 nurses.
