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NEWS & VIEWS |
Researchers from Sweden’s Karolinska Institute found that parents who talked to their child about the fact that he or she was dying had no regrets about it later. But some parents who did not have the discussion subsequently wished they had. Ulrika Kreicbergs, RN, and colleagues surveyed more than 400 parents who had lost a child to cancer. They reported their results in the New England Journal of Medicine (2004;351:1,175–1,186).
Their findings could help clinicians guide parents who are facing the same terrible decision, said Lawrence Wolfe, MD, Director of the Children’s Cancer Center at Tufts-New England Medical Center, who 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. The Swedish study backs up that position.
"In my own practice, I’ve never seen a child included in the discussion where it hasn’t paid off, big time," he explained. "Now we can say, ‘Don’t just take my word for it; here are parents who’ve been through it and we learned this from it.’"
But that doesn’t mean every family should tell a child he or she is dying.
"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."
"My mentors taught me that you do more as a physician if you can help this kind of family get through this terrible time with some sense of a future for themselves as a family," he noted. "These are the families—where we’re failing the patient from the perspective of curing them—that require the deepest amount of care."
In the Karolinska 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. More of the parents with regrets reported currently experiencing anxiety or depression compared with parents who were content with their decision. The parents with regrets were more likely to have thought that their child was aware of being near death, and their children were more likely to have been older at the time 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 the 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.
Some parents, however, simply cannot bring themselves to tell a beloved child he or she 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. An important aspect of this preparation is talking to the family about what the child’s death is likely to look like and sound like, Wolfe said.
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."
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