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Deciding Who Lives: Fateful Choices in the Intensive Care Nursery.

By Renee R. Anspach. Berkeley and Los Angeles: University of California Press, 1992. 303 pp. $25.00 cloth.

Changes in science and technology, evident in hospital intensive care units, increasingly have become the subject of research by social scientists. Issues of allocation of resources, access to high-technology treatments, and most importantly, the process of decisionmaking for critically ill patients have been investigated and described by physicians, nurses, philosophers, anthropologists, and sociologists. The neonatal intensive care unit is a dramatic example of the technological transformation of medicine, and its small and vulnerable patients are perhaps the most pathetic as well as the most exciting subjects for analysis.

In Deciding Who Lives: Fateful Choices in the Intensive Care Nursery, Renee Anspach gives us another look at the inner world of the care of critically ill neonates and the interaction between professionals and families. As a sociologist who spent sixteen months of field research in two neonatal intensive care units, Anspach seeks to describe and evaluate how decisions are actually made for sick newborns. She begins from the premise that much has been written about how decisions should be made, but little description of the actual process of decisionmaking and its social context has been available. Her contribution adds important, but not unique, observations to the growing literature generated by social scientists who have observed the world of neonatal intensive care.

Anspach believes that bioethics has been "dominated by an image of an individual autonomous moral agent who reaches decisions apart from social constraints." Whether this is a correct observation is not as relevant as her excellent description of the context, settings, and participants that shape these decisions. She ably examines the prognostic uncertainty evident in the unit and finds clear differences in the approach to assessing prognosis used by the nurses, residents, and attending neonatologists. Although all groups relied primarily on technological data (X rays, biomedical measures, monitor readouts), the nurses also relied heavily on interactive cues gleaned at the bedside. Nurses assign meaning to their patients' actions and interpret them based on social norms, while physicians, who spend less time with the patient, merely elicit physical findings and interpret data from monitors and laboratories. The hypothesis is that these differences result in the differences evident in determining prognosis and in communicating with families. The distance of the physician from the patient and family results in one level of assessment of prognosis and one type of interaction and dissemination of information about prognosis. The different perspective of the nurse may result in a different set of information transmitted to the family. Both observers are believed by Anspach to have "partial and selective visions of reality" which are the basis for prognostic discussions with families.

Although the author's observations regarding the difference in data-gathering techniques of the two professions are undoubtedly correct, she does not adequately address the role/responsibility distinction between the professionals. The attending neonatologist is faced with an awesome responsibility in determining the future of these fragile patients. Clearly, the nurse's more subjective observations should be integrated with the more objective laboratory assessments to create a complete picture of the infant's present status. The nurse is in charge of performing complex procedures, critically assessing the care of the patient, administering medications, and monitoring the equipment, but ultimately treatment decisions are the responsibility of the attending neonatologist. This aspect of role difference may be an important part of the observed difference in content of the communications with families.

In addition, Anspach points out what she believes to be a broad consensus around a "principle" in making treatment decisions. She observes that "if practitioners were reasonably convinced an infant was unable to survive or would survive with serious neurological defects (e.g. severe mental retardation or cerebral palsy), then it was considered appropriate to withhold life sustaining treatment from the infant." However, she points out that practitioners often disagreed on the prognosis. She believes this is because of their different style of assessing prognosis. An alternative hypothesis might be that they have differing values concerning the role of predictive uncertainty in decisionmaking. Many neonatologists, and it appears most of those she observed, believe that it is a greater wrong to allow a neonate to the who might develop into a normal child than to impose life on a child who develops severe disabilities. This view is not as widely held by the nurses who work in neonatal intensive care. They are far more loath to be involved in care that produces major handicaps. This too has its effect on communication with families. Thus, the sociologist's views on organizational structure and professional roles should be added to the ethicist's view of value distinctions in order to obtain an even richer understanding of the process.

Perhaps the most compelling part of the book is the analysis of the interaction between professionals and parents. Anspach points out that the process by which parents are informed about their child's illness and the context in which this is accomplished obviates the possibility of informed consent and merely results in forced assent to decisions already determined. She describes use of language, such as descriptions of suffering, appeals to expert opinion, and subtle manipulations of data that result in parents becoming "unwitting accomplices" rather than independent decisionmakers who elect to withdraw treatment from their neonates. She does admit that this attempt to elicit assent is more commonly used when professionals are certain about the prognosis and "rightness" of their argument and that when prognosis is less certain, more discretion is given to parents.

I believe her observations are correct and describe the practice in most neonatal intensive care units. However, Anspach does overlook the need for families to have expert opinions and the desire that most families express for such opinions. That is not to minimize her observation of the rampant paternalism evident in these units, but it should at least be pointed out that many who have commented on how decisions ought to be made have agreed that a recommendation by the physician should be part of an open exchange of information.

Finally, Anspach discusses the techniques used by professionals to persuade parents and preempt conflict in decisionmaking. She accurately observes the strategies used by physicians to alleviate guilt, take responsibility and authority away from parents, and obtain compliance with desired decisions. When conflict does occur, she asserts that professionals "psychologize" and transform parents from rational decisionmakers into second-order patients by using jargon such as "denial," "subconscious wish," and "projection" to describe actions or statements by family members. In addition, she describes nurses as "emotion managers," functioning to evaluate and direct parents' attachment to their babies by recommending pictures, bringing in breast milk, holding and stroking the baby, and so on. What Anspach overlooks is the overwhelming emotional impact of the birth of an abnormal child on the family. Appropriate concern for the family's emotional and personal needs is a major part of the care rendered by professionals in neonatal units. Although parents should be empowered to make decisions for their infants, it should not be expected that they will be rational, objective, and unemotional observers of their loved one's plight.

In conclusion, Anspach's contribution is to heighten awareness that it is far easier to preach how decisions ought to be made than to provide an environment in which these precepts are fulfilled. She points out the need to communicate more openly with families and to improve their ability to make informed choices throughout the nursery stay. Her analysis of practices over a decade ago are still relevant and important for the field of neonatology.

Alan R. Fleishman is director of the division of neonatology at Albert Einstein College of Medicine and Montefiore Medical Center, Bronx, N.Y.
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Author:Fleischman, Alar R.
Publication:The Hastings Center Report
Article Type:Book Review
Date:Nov 1, 1993
Words:1290
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