No Regrets: Discuss Death With Dying Child

Parents Need Hospital Staff's Help in Facing Death of a Child

From the WebMD Archives

Sept. 15, 2004 -- When death of a child is imminent, parents are best advised to discuss it with their child, a new study shows.

It's a delicate subject, whether or not to talk about death with a terminally ill child. All sorts of questions swirl through parents' minds: Is the child aware that death is close? Does talking about it help or not? Does the child even realize what death is?

Indeed, for some parents, broaching the subject with their child is too overwhelming -- they simply can't do it, lead researcher Ulrika Kreicbergs, RN, an epidemiologist with the Childhood Cancer Research Unit at Karolinska Institutet in Stockholm, Sweden, tells WebMD.

Her study appears in this week's issue of The New England Journal of Medicine.

Although the majority of parents in her study did not speak with the child about death, those that did have no regrets, she says. Only those who wanted to have the talk but didn't felt depressed and anxious when it was all over.

Hospital doctors and nurses have an obligation to help parents through this difficult time before death of a child, she says. "We should be aware whether a child senses their own death is coming, so we can help parents respond to their child's needs."

A Difficult Subject

For their study, Kreicbergs and her colleagues contacted parents in Sweden who had lost a child to cancer between 1992 and 1997. A total of 429 completed a questionnaire inquiring -- among other things -- whether they had talked about death with their child.

  • None of the 147 parents who talked with their child regretted it.
  • Almost a third of the parents who did not discuss this difficult topic with their child ended up regretting it.
  • Parents were more likely to talk to their children about death if they sensed their child was aware of his or her imminent death. Half of these parents spoke with their children, whereas only 13% of those parents who felt their children were not aware of their imminent death spoke with their children.
  • 49% of parents who sensed their child was aware of his or her imminent death but did not talk about it were more likely to have regrets later.
  • Parents having regrets were 33% more likely to have moderate to high anxiety level; they were 48% more likely to be depressed.
  • 46% of parents reported that they never sensed their child was aware of imminent death.
  • 22% first sensed this awareness in the child's last week of life.

Continued

No Regrets

"We had no parents who regretted their decision to talk to their child. ... They all seemed very satisfied with their decision," Kreicbergs tells WebMD.

Also, those parents who instead chose to focus their talk on life were also satisfied with their choice. It's important to respect a parent's decision to go this direction, she notes. "We should not encourage parents to talk about death if they have made a different decision," she tells WebMD. "They think that is right, and we have to support them."

But for parents who couldn't face "the talk," there was true regret later, Kreicbergs reports.

"Even though they knew that death was coming -- and they felt that their child was aware of imminent death -- they could not talk about it," she tells WebMD. "It's a situation where the child is trying to protect the parents, and parents are trying to protect the child. It's such a hard situation to witness. I think we could help those parents and children. I think it's easier for parents who have had this discussion."

In fact, it is conceivable that children are aware of their impending death -- even if parents or health care workers do not always notice this awareness, she says.

How can parents bring up this sensitive subject? Watching a special movie like The Lion King -- where death occurs -- is one way, Kreicbergs suggests. "Just ask a very simple question about death, let them express how they feel about it. How they feel will be based on the child's age, religion, culture. But just letting the child talk will help."

Many parents said their child "adopted" the movie as a sort of symbol of their struggle, she adds. "They often didn't bring anything else to the hospital except a copy of that movie. So many children are aware of the situation, are aware they are going to die, and are trying to prepare themselves for it. They want to see these stories where death occurs, to really identify what death is."

Child's Age Makes a Difference

Eugenio Rothe, MD, professor of child psychiatry at the University of Miami School of Medicine, was not involved in the study. But he offered his insights on preparing for the death of a child.

Continued

"The most important thing to keep in mind: Children don't begin to understand the finality of death until about 9 years old," Rothe tells WebMD. "Before that age, it's important to be with the child, so the child feels supported, does not feel abandoned."

But many very young children ask about death, he says. "Try to answer them at a level the child can understand. Encourage them to talk about it -- what they think about death, about angels, about heaven. You can hear from the child what they are ready to understand."

By age 9, children have a more realistic idea of death. "Pets die, grandparents die. That's when it becomes real to them," Rothe tells WebMD. "Most of the time, children can sense when their end is near. It's a very, very delicate point how to deal with that. Some children and adults do better using massive denial; others do better knowing what's going on. Be aware where the child is at, and probe lightly to see what they can process.

Most of all, it's critical that parents stay close to the dying child. "Years ago, parents were not allowed in the hospital when children were sick," says Rothe. "Now we know that's very detrimental, it can cause double traumatization. It's universally encouraged that parents must be there for their child" when death of a child is imminent.

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Sources

SOURCES: Kreicbergs, U. The New England Journal of Medicine, Sept 16, 2004: vol 351; pp 1175-1186. Ulrika Kreicbergs, RN, epidemiologist, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden. Eugenio Rothe, MD, professor of child psychiatry, University of Miami School of Medicine.
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