1978: published by Princeton University Press
by John Bartelt
Editors Note: John, who lives in San Luis Obispo, has been a camp and retreat leader for CFRI, a moderator for CFRIs support groups, and is now a book reviewer. CFRI appreciates the time and talents he has shared with CFRI over the last 10+ years.
The Private Worlds of Dying Children is an award-winning book by anthropologist Myra Bluebond-Langner. Private Worlds is a study of awareness and communication in terminally ill (particularly end-stage) children. It reveals that these children understand their prognosis even if no one tells them, and explains why they conceal their knowledge from their own parents and medical staff. Adapted from the authors doctoral thesis, the case study section of this work is, interestingly enough, presented in the form of a play, which takes place on a leukemia ward.
Most parents will recognize the various personality types represented by the composite characters in this section. The authors observations rapidly unfold: there are strict social rules about dying in our society. Children quickly interpret death as an inappropriate topic of conversation with adults (as evidenced by adults reactions when children try to discuss it), whereas other children are eager to share information about it. Like the topic of sex, terminally ill kids learn to safely discuss their prognosis where adults cannot hear them. In effect, with regard to certain topics, children are socialized to act secretively around adults and openly around their peers.
Bluebond-Langner reminds us that by age three, children can understand that they have a terminal illness. She notes that all children, sick or well, from age three onward, fantasize and are concerned about dying. Her study shows that children know their condition quite well, whether or not it is ever discussed with the child. In our society, we practice what the author calls "mutual pretense:"an unspoken agreement to follow certain specific rules to avoid talking about the childs prognosis. Children are responsive to this pattern of social order, and join in the pretense in order to ensure their social acceptance and worth.
Mutual pretense is the dominant mode of interaction between the terminally ill and those who attend them. It enables all parties to continue doing what society expects of them: to fulfill the social roles and responsibilities that are necessary to maintain membership roles in our society. The rewards to the children who follow these rules of mutual pretense are great: by reinforcing the adults rules of hope, the children guarantee the adults continued presence. They will not be left alone. The rewards to the adults are also significant: to "raise" a child (which is a parents primary role in our society), the parents need to perceive a future for the child. And to "treat" the child (which is the role of the physician), the doctor needs to view the child as "treatable." The inconsistencies of these roles in the face of end-stage terminal illness bring about a conflict between the desire to uphold personal integrity and the pressures to maintain our normal social roles. The author offers an elegant solution, worth reading the book for: devising a policy that allows the children to maintain "open awareness" with those who can handle it, and at the same time to maintain "mutual pretense" with those who need to practice it. Such policies will not be perceived as unusual or abnormal; to be accepted in any group in our society, one must act differently than in other groups. Children know this, and act accordingly. They will honor whatever rules are set up.
The issue then becomes not "whether to talk," but "how to talk," and in a manner that respects the many conflicting needs of everyone involved. For those adults who choose to practice open communication with children, the author offers a practical rule of thumb in discussing matters of illness and death: "Tell them only what they want to know, what they are asking about, and on their own terms." This practice is also applicable in deciding what to tell children about sex.
The book is a detailed study of the communication patterns between children with leukemia and the adults around them. The future for CF children appears quite hopeful, thanks to many recent medical advances; nonetheless, the books major points still seem applicable to CF in many respects. It maybe an intense book for some parents, but it offers an interesting and enlightening read, along with practical suggestions for bridging the gaps between the conflicting demands of social order and open communication.
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