Should parents talk to their dying children about death? A Swedish study found that parents whose children died of cancer had no regrets about talking to them about death, while some who didn’t do so were sorry later.
Many doctors and medical organizations encourage parents to discuss death with terminally ill children because they believe it helps the child. But little research has been done on such a difficult subject. Indeed, the Swedish researchers said they met resistance while seeking approval for their study from colleagues who feared they would reopen painful memories for parents. But most of the parents contacted agreed to take part.
“The most important message is that no parent regretted having talked about death with their child,” said Ulrika Kreicbergs, the study’s lead researcher and a nurse at the Karolinska Institute in Stockholm.
Dr. Lawrence Wolfe, a child cancer specialist in Boston, said the study will help physicians guide parents who are unsure about broaching the subject with their children. He said parents naturally want to shield their children or have a hard time themselves accepting that their child will die. But he said such discussions ease children’s fears and let them prepare for death in their own way.
“It is my conviction that even very young children have an idea that something very serious is happening,” said Wolfe of the Floating Hospital for Children at Tufts-New England Medical Center. “Mystery is usually worse than the truth.”
The study was published in Thursday’s New England Journal of Medicine. Wolfe wrote an accompanying editorial.
As a young nurse in the early 1990s, Kreicbergs said she was distressed by how the hospital staff and the families of three dying boys avoided talking about their deaths, trying to protect each other and the youngsters. “I felt like I had to do something for these parents,” said Kreicbergs, who years later proposed her research project.
Using Sweden’s comprehensive cancer and death records, the researchers found 368 children under 17 who had been diagnosed with cancer between 1992 and 1997 and who later died. They contacted the children’s parents, and 80 percent of them filled out a long, anonymous questionnaire.
Among the questions: “Did you talk about death with your child at any time?”
Of the 429 parents who answered that, about one-third said they had done so, while two-thirds had not. None of the 147 who did so regretted talking about death.
Among those who had not talked about death, 69, or 27 percent, said they wished they had. Parents who sensed their children realized they were going to die were more likely to regret not having talked to them, the researchers reported.
They also found that parents who discussed death were likely to be religious, older and have an older child.
'Her memory just keeps living on'
Another of the study’s researchers, Dr. Gunnar Steineck, said they were surprised that two-thirds of the parents had not talked at all to their ill children about death. He said parents need to follow their intuition.
“The shielding and the taboos we have are obsolete — they’re old-fashioned. They should not hinder us from talking about death when we feel it’s right,” he said.
Wolfe said he would expect similar study results in the United States, although he thinks more U.S. parents overall discuss death with their ill children.
A national program is training nurses how to improve care for dying children, including fostering better communications among the medical staff, parents and the child, according to Betty Ferrell, a nurse who helped write the curriculum.
“Nurses, just like parents, say the wrong thing out of compassion. We want to teach nurses what to say,” said Ferrell of the City of Hope National Medical Center near Los Angeles.
Priscilla Grippi, who lost her 12-year-old son Peter to leukemia in 1987, said she wishes she had the chance to talk to him about dying. Peter never fully recovered from a seizure before he died. Now, as a parent consultant at Tufts-New England Medical Center, she helps other parents cope with their child’s impending death.
“I don’t ever want them to ever have those feelings that I had,” she said.
Another parent, Susan Mello Souza, said she was devastated in 1990 when Dr. Wolfe said her daughter Jackie had to be told that she was near death from leukemia.
“I thought, ‘You’re kidding. How do you tell a 16-year-old who has fought every day that we’re going to give up on her?”’ said Souza of Acushnet, Mass.
But Souza said she is grateful that they did. Before Jackie died four days later, she decided to use money raised for travel expenses for her canceled bone marrow transplant to buy toys and equipment for the hospital, and now there is a memorial fund in her name.
“Her memory just keeps living on because she told us exactly what to do and how to do it,” she said. “If we hadn’t told her, she never would have been able to say any of that.”