Parents of children with terminal illness have to deal with their own grief and the additional challenge of helping their child understand what is happening. One of the main questions is often whether or not to talk to their child about death, and how to do it. Previous research shows that children often know that they will soon die and can benefit from talking about it, but there are fewer studies of parents' attitudes. Researchers in Sweden broached the topic with parents whose children have died from cancer.

What the researchers wanted to know: Did parents of children who have died regret talking to their children about death, or, if they didn't, wish they had discussed it?

What they did: The researchers identified Swedish children who had died from cancer between 1992 and 1997 from a national registry and sent letters to their parents (mothers and fathers separately), followed by a questionnaire with 129 questions about the child's care, parent's state of mind, and communication about death. Eighty percent of the parents identified, 449 parents, completed the questionnaire and sent it back to the researchers.

What they found: Thirty-four percent (147 parents) talked about death with their child and none of them regretted it. Of the 282 parents who did not talk about death with their child, 27 percent regretted not saying something. Parents who talked to their children about death were more likely to have older children, be older themselves, be religious, and have a sense that their child sensed his or her own impending death. Of those who did not talk to their children, mothers, parents of older children, and parents who sensed their child was aware of impending death were more likely to regret that decision.

What it means to you: Grieving and helping your child adjust to the idea of death is a very personal and individual process for each individual and each family. However, it should comfort parents dealing with their child's terminal illness to know that, in hindsight, parents in this study never regretted talking to their child about death. In an editorial commentary about this study, pediatric oncologist Lawrence Wolfe writes that when children are aware of their own death, talking with them about what is going on is extremely important. Both the doctor and the family, he writes, need to care for "breaking hearts" just as a cardiologist cares for a failing heart.

Caveats: Not all of the parents in this study responded to the researchers' initial request, leaving open the possibility that some parents who talked to their children about impending death regretted it. In addition, all of the parents questioned lived in Sweden, so parents living in other places may have different attitudes about death and different feelings about talking with their children.

Find out more: CureSearch, sponsored by the National Childhood Cancer Foundation and the Children's Oncology Group, has resources for children and their families who are dealing with cancer, including information about the end of life and bereavement.

Read the article: Kreicbergs, U. et al. "Talking About Death With Children Who Have Severe Malignant Disease." The New England Journal of Medicine. Sept. 16, 2004, Vol. 351, No. 12, pp. 1175-1186

Wolfe, L. "Should Parents Speak With a Dying Child About Impending Death?" The New England Journal of Medicine. Sept. 16, 2004, Vol. 351, No. 12, pp. 1251-1253.

Abstract online: http://content.nejm.org