Confronting the Worst With a Dying Child

Many parents don't regret telling a child about impending death

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HealthDay Reporter

WEDNESDAY, Sept. 15, 2004 (HealthDayNews) -- New research attempts to help parents sift through one of the most difficult decisions they will ever have to make: Whether to tell their terminally ill child that he or she is dying.

The study found that none of the parents who told their children about their impending death was sorry about doing so, while one in four parents who never talked about the coming death with their youngster later regretted that decision.

"Most [parents] are comfortable with their choice, and especially those who talked," said study co-author Ulrika Kreicbergs, a registered nurse and doctoral candidate at the Karolinska Institute in Stockholm, Sweden.

"No parent in the studied cohort regretted having talked about death with their child," she said.

Results of the study appear in the Sept. 16 issue of the New England Journal of Medicine.

Kreicbergs and her colleagues sent questionnaires to every parent in Sweden who had lost a child to cancer. (Permission from the child's treating physician was obtained before the researchers sent the questionnaires.) Of the 561 questionnaires sent to eligible parents, 449 parents responded, and 429 completed information on whether they had talked about death with their child.

The questionnaires contained 129 questions and included information on the child's care, whether or not the parent had talked about death with the child, and the parent's mental health status in the years following the child's death.

Only 34 percent of the parents had talked with their child about death, according to the study. Of the 66 percent who did not, 73 percent were comfortable with their decision. But more than one in four -- 27 percent -- said they regretted not talking to their child about death. None of the parents who had a discussion about death with their child regretted doing it.

The child's age, both at the time of diagnosis and at the time of death, appeared to be a big factor in whether or not parents talked about death with their child. Parents of children under 3 were the least likely to have brought up the subject.

Parents who considered themselves somewhat, quite or very religious were also more likely to broach the topic of death with their child. In fact, they were nearly twice as likely as people who said they were not at all religious.

One of the strongest predictors of whether a parent would discuss death with a child was whether the child seemed to be aware of his or her own imminent death. If a parent believed the child was aware that the illness was terminal, parents were more than four times as likely to discuss death with their child. Those parents who never talked about death but sensed their child was aware of it were more likely to later regret the decision not to talk about death.

Mothers were more likely than fathers to regret not having talked to their child about death, as were parents of older children.

Dr. Lawrence Wolfe, chief of pediatric hematology and oncology at the Floating Hospital for Children at Tufts-New England Medical Center in Boston, called the study's design "brilliant," and said the authors managed to take an objective look at a very emotional topic. Wolfe also wrote an editorial about the study in the same issue of the journal.

"This study doesn't make the claim that this is what you should do. It just tells the families' stories. A large percentage of them didn't say anything, and a fair amount did have regret," he said.

His own experience in dealing with families and dying children, Wolfe said, shows that talking about death often has dramatically positive effects.

"The parent's notion is that letting this word -- death -- out of the box has a real sense of doom to it. It's almost as if they may think saying it to a child may make it so. And, everyone assumes this discussion will lead to terrible feelings, but the reverse is almost always true," Wolfe said.

"It often begins a process of healing and loving that is counterintuitive. Sometimes it's because the taboo subject has been removed, and the parent and child can be more natural," he said.

But, Wolfe added, it's also important to realize that every situation is different and there is no one "right" way to handle this very difficult situation. He said it's OK to ask your doctor or other caregiver for help talking to your child if you need it.

More information

To learn more about coping with the loss of a child, visit The Compassionate Friends.

SOURCES: Ulrika Kreicbergs, R.N., doctoral candidate, Karolinska Institute, Stockholm, Sweden; Lawrence Wolfe, M.D., chief, pediatric hematology and oncology, Floating Hospital for Children, Tufts-New England Medical Center, Boston; Sept. 15, 2004, New England Journal of Medicine

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