Meaning in Suffering: Caring Practices in the Health Professions

5: Wish Fulfillment for Children with Life-Threatening Illnesses

5 Wish Fulfillment for Children with Life-Threatening Illnesses bonnie ewing Introduction Children with life-threatening illnesses are subjected to numerous treatments and procedures. They often experience enormous physical and emotional pain and suffering as attempts are made to prolong their life. Desperately dependent on the medical system for their survival, these children and their families often experience hopelessness and helplessness due to the many hospitalizations, painful treatments, and procedures they must endure. As a life-threatening illness progresses, children come to realize that their body is changing and becoming more fragile. Their self-esteem suffers as they sense that they are not growing and developing in the normal way that they once did (Hynson, Gillis, Collins, Irving, & Trethewie, 2003). Becoming aware that they are different from other children, they feel lonely and isolated. Bluebond-Langner (1978) writes that dying children are unlike other children because they will not “become” (p. 213). Society measures their worth by what they do now, unlike other children, who have time to prove themselves. Within all of the physical and emotional turmoil in these children’s lives is the anxiety brought on by their experience of being-toward-death.1 How is fear of death experienced by children with a life-threatening illness ? How do these children face living with uncertainty? Do they dream and think about possibilities for the future? 186 Wish-granting organizations seek to offer a form of escape or a respite from these difficulties; they invite the children to enter a world of fantasy or dreams by thinking of a special wish, one that they desire above anything else. With this invitation an assumption is made that having a special wish fulfilled creates a sense of hope and joy that may help these children transcend the difficult and sorrowful conditions that they must endure before death. However, when a child is diagnosed with a lifethreatening illness, real-life limitations affect the outcome of this special wish experience, regardless of what adults might hope or believe may happen. Children with a life-threatening illness exist within the context of impending death. They experience suffering in the form of physical pain, anxiety, anger, separation and loss, and fear of death. Hope, in the form of wish fulfillment, may make a difference by providing a more meaningful existence for the children—or it may not. Wish-granting organizations believe that they are providing uplifting experiences for children with a life-threatening illness. Adult volunteers and professionals develop and advocate for approaches that will help to ensure that the fulfilled wish will be beneficial for these children. Parents also share their impressions of their experiences of wish fulfillment with volunteers from the organization and sometimes with the media. All, including volunteers, parents, and professionals, may benefit, however, from further exploration of what special wish fulfillment means to the child. Significance of the Study Although adults hold strong beliefs about the importance of wish ful- fillment for dying children, there has been no research that explores what the experience of having a special wish fulfilled means to a child with a lifethreatening illness. We cannot assume that a child feels the same way as an adult would about the experience of having a special wish become a reality . Also, because their verbal language is unsophisticated, children cannot be relied upon to convey the complexity of meanings of having a special wish fulfilled. Therefore, children are in a prime position to be misunderstood by adults (Garbarino, Stott, & faculty of the Eriksson Institute, 1992). Research specifically designed to give children a voice was needed. It is of paramount importance to learn what having a special wish fulfilled means to a child with a life-threatening illness, because Wish Fulfillment 187 188 bonnie ewing miscommunication and misunderstanding between adults and children may be detrimental to both children and parents. For example, some adults, including parents and professionals, believe that it is better to protect children from the pain of knowing; they therefore avoid discussing problems related to the child’s illness or they may provide vague answers. In some cases they even lie. The expressed desire to protect children by concealing information is often an indication of the adult’s discomfort with issues of loss, pain, illness, and death (Bluebond-Langner, 1978). Furthermore, caregivers need to know how a child experiences...