Award-winning book looks at responsibility for sick babies in hospitals

August 09, 2000

EVANSTON, Ill. --- Sue and Will's daughter Tiffany was born prematurely and spent the next four and one-half months in hospitals. Tiffany was an extremely fussy eater. Sue, who was 19, had to keep explaining to physicians and nurses that the problem was not that her daughter was being held improperly or being fed ineptly.

Despite the bias she felt because of her age, Sue took her parenting job seriously. She insisted that Tiffany be transferred to another hospital when she felt that nurses did not change the tracheostomy tube that connected Tiffany to the ventilator frequently enough or clean the area around the tube properly. After Tiffany finally got home, Sue resuscitated her after she stopped breathing, confronted medical suppliers who failed to keep the baby's life-saving machine in good repair and detected signs of illness in Tiffany before home nurses did.

Described in the book "For the Sake of the Children" (The University of Chicago Press), Sue and Will's case illustrates how responsibility, in this case under extreme circumstances, is complicated in an organizational world. The book's co-authors, Carol A. Heimer, professor of sociology at Northwestern University, and Lisa R. Staffen, a doctoral student in sociology when the book was written, used the case as well as a host of records and interviews with parents, physicians, nurses and other medical personnel at two Midwestern neonatal intensive care units (NICU) to examine conditions under which people accept or reject responsibility.

On Saturday, Aug. 12, the "For the Sake of the Children" authors will receive the book prize from the Theory Section of the American Sociological Association, "given to recognize outstanding work in theory for a book published in the preceding four calendar years"; on Tuesday, Aug. 15, they will receive the Eliot Freidson Outstanding Publication Award from the Medical Sociology Section of the American Sociological Association for a book "published in the preceding two years that has had a major impact on the field of medical sociology."

According to the book, Sue and Will were formidable advocates for their child, despite mind-numbing disruptions to their lives, dealing with a thicket of institutional politics, policies and routines in the hospitals and during Tiffany's home care. In general, and to the researchers' surprise, the book concludes that parents often are willing to take on, rather than shirk, responsibility for their seriously sick children. But many parents were far less successful advocates than Sue and Will.

The reasons are as complicated as the individual parents' circumstances, but Heimer and Staffen believe that institutions also complicate how parents handle responsibility. A fundamental question of the research concerns how the acceptance of responsibility can be either undermined or supported by the way institutions are designed and the way systems (including informal rules of family life, rules of professional conduct, routines and procedures of particular organizations, administrative regulations of state and federal bureaucracies and state and federal law) work together.

The book discusses how medical personnel quickly get caught up in the business of labeling as they try to figure out which parents are competent and which should be encouraged to take more responsibility for their babies. Inevitably, their assessments are affected by the parents' gender, race, social class, marital status, age and educational backgrounds.

Hospital personnel share and institutionalize their assessments as they watch to see which parents learned CPR properly, to change the colostomy bag, to suction the child with a tracheotomy. But in reality most of the watching is focused on the mothers. Mothers, of course, are safe bets. But "For the Sake of the Children" argues that in treating women differently than men, the hospital's social control system helps perpetuate a predictable outcome.

"Men seem almost irrelevant," said Heimer. "Fathers get a strong clue that they need not be responsible."

The expectations for young unmarried mothers also are relatively low. The NICU staff argue that it is necessary to accommodate different lifestyles with varying standards of tolerance for diversity in parenting. "But despite those arguments, expecting an unmarried mother to visit her baby only once a month is unacceptable," said Heimer. "If a middle-class married mother did that the staff would be horrified."

Inequalities between rich and poor, male and female, white and black, old and young, employed and unemployed, married and unmarried and the better and the less educated affect both a parent's ability to take responsibility and the pressure medical personnel put on them to take responsibility, according to the book.

Parents, especially middle class parents, who know their rights and have the social skills to insist tactfully that they be honored tend to be treated better by hospital personnel, the book concludes. Operating successfully within the organizational structure of the health care system gives parents a distinct advantage in how they will be judged as parents -- ultimately affecting how they accept responsibility.

But any parent with a critically ill child faces a tough journey in negotiating sometimes life-and-death matters with a rotating host of professionals whose expertise is direly needed but whose competency and commitment may vary.

The researchers are interested in how social control systems could induce parents to take responsibility and to become better organizational players and advocates for their children. They also ask how parallel social control systems can be used by parents to coax higher levels of responsibility from medical staff.

The book concludes that "whether one accepts responsibility depends less on its magnitude than on whether one has ownership of the responsibility, incentives to exceed minimum standards, the resources to secure contributions of others and the authority to follow the responsibility across organizational borders." With that message, the book offers an empirical, sociological answer to contemporary political debates about moral accountability. The authors help us see why some people take responsibility for their lives when others do not. They show how social organizations and institutional arrangements sometimes support and at other times hinder individual responsibility.

Northwestern University

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