Loss and Grief

There are many types of loss, but in most Western cultures, the death of a child is considered the most difficult loss because of the symbolic meaning and value associated with having children (Rubin & Malkinson, 2001). In such cultures, the death of a child is considered “out of order” and shatters basic expectations regarding the sequence and predictability of events (Rando, 1983; Schmidt, 1987). The loss of a child challenges the evolutionary role of the parent as “protector” and may result in feelings of despair, isolation, and guilt (Finkbeiner, 1996). This reaction to losing a child is perhaps related to the lower mortality rate experienced in many Western cultures. Cultures with higher infant mortality rates may view the significance of a child’s death differently (Eisenbruch, 1984a). There are also differences in how people of various ethnic backgrounds experience the loss of a child within the United States (Kalish & Reynolds, 1976). Despite the extensive history of research and writings on loss and bereavement, there is a dearth of controlled studies specific to bereavement in the pediatric oncology population. Ethical and methodological challenges may account for the limited research in this area. In addition, the increase in the survival rate for pediatric oncology patients over the past several decades has resulted in an emphasis on the study of coping and adjustment of survivors. In the United States, mortality rates associated with pediatric cancers have been declining for over a quarter century. Between 1975 and 1995, the overall decline in mortality was nearly 40% (Ries, 1999). Still, an estimated 1,500 deaths were expected in 2003 among children diagnosed with cancer between the ages of birth and 14 years, indicating that clinicians in this field are still frequently confronted with anticipatory grief and subsequent bereavement issues for patients and families (American Cancer Society, 2003). The current chapter provides a brief overview of relevant bereavement literature in the context of describing bereavement in pediatric oncology and introduces a model of coping with bereavement suited to describing the range of reactions to the loss of a child.