Children Who Are Dying
As difficult as it is to acknowledge that children think about death, it is even harder for adults to conceive of children dying. The significant accomplishments of modern medicine have certainly made this a relatively rare event. However, there still are many children and families who must cope with the realities of terminal illnesses such as cancer, AIDS, or cystic fibrosis.
In the 1970s and 1980s Myra Bluebond-Langner spent countless hours listening to the stories of dying children and their families. What she learned has offered an important window to the experiences of the dying child, and those of their healthy siblings. According to Bluebond-Langner, children who are dying become very sophisticated about the nature of their illness and hospital procedures. As they enter repetitive cycles of sickness, treatments, and remission, and as they observe children with similar illnesses dying, their self-perceptions gradually change from "I am sick but I will get better" to "I am sick and eventually I will die from this illness." These children know about death at much earlier ages than do healthy children. These children also quickly learn that it causes great pain for their parents and other adults if they bring up the possibility of their dying. In their efforts to protect their elders and to ensure their continued visits and care, many terminally ill children engage in a game of "mutual pretense" wherein everyone knows they are dying but they are reluctant to talk about it in an open and meaningful way.
Bluebond-Langner also found that the well siblings of dying children were in significant need of care and nurturance. As the demands and psychological stress of the illness took its toll on their parents, the healthy siblings were frequently neglected and living in "a house of chronic sorrow." Furthermore, siblings' roles in their families were ambivalent and undefined. "Should I parent my parents?"; "Should I take the place of my dead brother (sister)?"; "Why do I feel both happy and sad that she died?"; "Should I just disappear?"—these were some of the concerns of the siblings.
The knowledge gained from these trying circumstances is important. Children who are dying need open communication, assurances that they will not be abandoned, and a sense of normalcy to the extent to which they are capable. Older children and adolescents also need to feel that they have some control over their situation, and they need to be treated as unique individuals. Many of these concerns are applicable to their well siblings. And, of course, their parents need an incredible amount of social and emotional support as they encounter their ultimate nightmare.