A new study may help parents make one of the most difficult decisions they could ever face: whether to discuss death with a child dying of cancer.
Researchers in Sweden found that parents who did talk to their child about dying had no regrets about it later. But some parents who did not have the discussion wished they had. The researchers surveyed more than 400 parents who had lost a child to cancer. They reported their results in the New England Journal of Medicine (Vol. 351, No. 12).
Their findings could help reassure parents who are facing the same situation, said Lawrence Wolfe, MD, director of the Children's Cancer Center at Tufts-New England Medical Center. He wrote an editorial accompanying the study.
Experts generally recommend parents be as honest as possible with their sick children and allow the children to express their fears, he said. But that doesn't mean every family should tell a child he is dying.
Every Family Is Different
"This is not dogma," Wolfe said. "It doesn't say you must tell your child about death. What it does say is, people who chose to do that felt good about it, and those who didn't sometimes didn't. The key is steering people to make the best decision for their family."
In the study, 147 parents said they had talked to their dying child about death and none of them regretted it. These parents were more likely to feel that their child was aware of being close to death and were more likely to be religious.
Among the 258 parents who did not talk with their child about death, 189 were satisfied with their decision and 69 were not. The parents with regrets were more likely to have felt that their child was aware of being near death, and their children were more likely to have been older at the time of death.
Wolfe said he has seen families choose both routes. And while he respects the decision of families who do not want to talk about a child's death, "in my own practice, I've never seen a child included in the discussion where it hasn't paid off," he said.
Many Children Aware of Death
Most dying children are aware that they are going to die, Wolfe said. Even very young children can sense fear and anxiety in their family members. And while it may not be feasible to discuss death with a child who can't yet talk, it is important to make sure that child senses love, security, and peace from family members.
With older children, though, talking about death can have certain benefits. These children are likely to know that cancer can kill (from the media or research on the Internet, perhaps), and understand that their deteriorating condition is a bad sign.
"For older children you can basically do a couple of things," Wolfe said. "You can promise they will be comfortable, have peace, won't be very scared, will be free of anxiety and pain, and will be able to love and be loved as long as possible."
Some children may also be comforted by the possibility of leaving a legacy, he said. One 9-year-old boy he treated, for instance, gave away his favorite possessions to friends and helped plan his own funeral.
How Doctors Can Help
Some parents, however, simply cannot bring themselves to tell a beloved child he is dying, even though they want the child to know. In these situations, a good doctor can help open the dialogue.
"I think a good pediatric oncologist can talk to children about the fact that their illness may hurt them or bring them to an end -- in a way that is as compassionate as possible," Wolfe said. "There are [doctors] all over the country working really hard to smooth the waters for this terrible situation."
Timing the conversation is important, though. Wolfe said he tries to broach the subject before a child's situation is so desperate that there is no longer any hope of survival. Doing so enables families to start thinking about -- and preparing themselves for -- the worst possible outcome.
Many parents discover their dying children are more worried about what will happen to the families they leave behind than about their own death, Wolfe said.
"Think about the sudden meaning that creates," he said. "Sometimes if you just open the door, even though you think you are inviting the worst possible nightmare, sometimes what you get is love and clarity."
Additional Resources
Coping with Grief and Loss
Children and Cancer: Information and Resources
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