With dying kids, parents find truth is best

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If you were the parent of a child with a terminal illness, would you talk to him or her about dying? New research reported Wednesday suggests parents are more likely to regret avoiding the topic than addressing it.

Among parents who lost a child to cancer, more than one-quarter who said they did not talk about death with their children regretted not having done so. Parents were more likely to wish they had brought it up if they believed their children sensed they were dying. 

In contrast, none of the parents who discussed death with the child said they regretted their choice, the researchers report in the New England Journal of Medicine.

Study author Ulrika Kreicbergs explained that parents who were open with their children about death may have had fewer regrets because they believed they had done “something absolutely necessary to reach the end of a traumatic experience.”

Kreicbergs noted that one parent said she watched the movie “Bambi” with her dying three-year-old, which she said helped her daughter believe that dying was nothing to be afraid of.

Given that parents were more likely to regret secrecy if they felt their children knew they were dying, Kreicbergs recommended that parents heed children’s signals—such as drawings, movie choices or music—that can indicate what they are thinking.

Currently, the International Society of Pediatric Oncology recommends that parents be honest with their ill children about their prognosis. Studies also show that most children benefit from accurate information about their health, perhaps because that information helps them make sense of what they are feeling, seeing and hearing from others.

To investigate how parents cope with honesty about death with their terminally ill children, Kreicbergs and her colleagues at the Karolinska Institute in Sweden asked 449 parents of children who died of cancer about their experience.

The researchers found that only one-third of parents said they had talked about death with their children. Parents were more likely to bring up death if they believed their children knew they were going to die.

Parents who regretted not being open with their dying children were more likely to report feeling anxious or depressed.

In an accompanying editorial, Dr. Lawrence Wolfe of the Tufts-New England Medical Center in Boston writes that it is natural for parents to want to protect their children from the idea of death. However, he notes that people may be surprised at how well they and their children react to an impending loss.

For instance, he recalls a nine-year-old patient who displayed a “startling maturity” after he learned he was dying—by leaving his possessions to his friends, planning his funeral, and deciding what he would wear to his burial.

“I have seen a dysfunctional family filled with anger about a presumed late diagnosis come together in a hospital room, acknowledging to me that their experience completely changed how they viewed the world and one another,” Wolfe writes.

SOURCE: New England Journal of Medicine, September 16, 2004.

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