How to discuss death with a dying child: can a story help?

Is it necessary--and possible--to discuss death with a terminally ill child? How should one approach the subject? A recent Swedish study demonstrates the benefits for parents who discuss with their child his or her imminent death, and examines the ways in which caregivers can help such parents. The mother of one child treated in our unit recently wrote a story 48 hours before her child's death. The story served to broach a number of questions often raised by dying children and their families: fear of the unknown, of being replaced, the inevitability of death, grief and fear of being forgotten... Since 2004, the story has been given to several families with dying children in our unit. In order to evaluate the story's impact on families and to determine whether a document which stimulates dialogue should continue to be given to parents, we asked the first thirteen to fill out a questionnaire. The results confirmed that the story was experienced as something positive and that it helped parents to talk with their children. The results of our study lead us to conclude that the medical profession should lend its full support to families who wish to engage in this dialogue with their children. This study also raises many questions and should be part of a global accompaniment strategy. With our support, an illustrated story book called Falikou was published in October 2006.