The Private Worlds of Dying Children, Essay Example

In the preface to the book “The Private Worlds of Dying Children,” author Myra Bluebond-Langner says that one of the significant issues the book attempts to address is the question of “how terminally ill children come to know they are dying when no one tells them” (Bluebond-Langner, p. ix.)  The other primary issue for the author relates to how and why terminally ill children “conceal this knowledge” about the truth of their condition from their families and the doctors and health care workers who treat them. According to the author, the parents and doctors of terminally ill children typically pretend that these children are dying, while the children pretend not to know they are dying. Bluebond-Langner describes this as a state of “mutual pretense,” and claims that children and parents behave this way because they are socialized to do so. While this is not the only way that adults and children must behave in situations involving terminally ill children, the author notes that “open awareness” on the part of adults and children is less common because it does not align with typical rules of social order.

Although the author discusses a number of important issues in this book, the two most important are the questions of how terminally ill children come to understand that they are dying and why they often fall into the pattern of pretending not to know this information. For the first question, the author provides a number of answers. First, it is clear that unless they are told about the truth of their condition, which was unusual in the course of the author’s research, terminally ill children do not immediately or quickly figure out or realize that they are dying. Instead it is typically a long process during which the terminally ill child slowly acquires bits and pieces of information from his or her environmental surroundings and the reactions and behaviors of other people. One of the ways that children come to understand their condition is by testing the reactions of people when they make statements about dying.  A child who is about to be subjected to an unpleasant treatment, for example, might declare that he or she does not want the treatment because it will not change the fact that they are dying. The lack of a response from a health care worker might serve to confirm for the patient that his or her suspicion is correct.

Even when children come to understand that they are dying, they are often willing to conceal this fact, and pretend not to know the truth of their condition. Bluebond-Langner believes that this can be explained by the fact that “the children and those they interacted with were part of a social order that could only be preserved through the practice of mutual pretense” (p. 198).  There are a number of levels of awareness for dying children, such as “closed awareness,” “suspected awareness,” “mutual pretense,” and “open awareness” (Bluebond-Langner, p. 198). It is in the “suspected awareness” context that children may begin to test the reactions of those around them in order to confirm their suspicions. What the author found in her research is that many terminally ill children moved from “suspected awareness” to “mutual pretense,” and avoided “open awareness” in order to maintain their place in the social order. This is also true for parents, doctors, and others involved in the “delicately balanced drama” (p. 200,) as “mutual pretense” allows everyone involved to continue playing their established social roles.

As Bluebond-Langner relates, what makes it so difficult for children and adults to practice open awareness when a child is dying is that the social roles for all the parties involved are so strongly shaped around certain parameters. Parents are expected to protect and care for their children; children are expected to have a future and to engage in behaviors that move them towards that future. Simply put, when a child is dying, neither the child nor the parents have the tools to know how to take on new social roles. For many parents and children it is easier to maintain the established roles than it is to carve out new ones, especially with the awareness that everyone involved has little time left with each other. For some of those who must endure living through the death of a child, it may be possible to practice “open awareness,” but it is neither easy nor common to do so.

Works cited

Bluebond-Langner, Myra. The Private Worlds Of Dying Children. 1st ed. Princeton, NJ: Princeton University Press, 1978. Print.