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Dying kids suffering needlessly

A study says children with terminal cancer are not given adequate treatment for pain because doctors are too focused on a cure.

Children dying of cancer suffer greatly because they are not given adequate treatment for pain, shortness of breath, profound fatigue, nausea and other symptoms, according to a study being published today in the New England Journal of Medicine.

Treatments for those symptoms exist, but doctors are not using them well enough, concluded a research team led by Joanne Wolfe, a pediatric oncologist at Children's Hospital and the Dana-Farber Cancer Institute in Boston. Their report is based on medical records and interviews with parents of 103 children, and it is the first published survey of parents whose sons or daughters died of cancer. According to the parents, 89 percent of the children suffered a great deal from at least one symptom in their last month of life.

The authors of the study said more attention should be paid to treating discomfort in children with cancer, and not just at the end of life.

Leonard H. Wexler, a pediatric oncologist at Memorial Sloan-Kettering Cancer Center in New York, said: "This paper is pretty humbling. I think it will force institutions to ask themselves, "Are we doing an adequate job of meeting patients' needs at the end of their lives?' "

Children's suffering, the authors said, may be neglected because doctors do not recognize it, because they are more focused on curing cancer than on treating pain and because many doctors have little training or experience in taking care of dying children _ especially since 75 percent of children with cancer are cured.

Symptoms may also be overlooked because, the goal of treatment has shifted from cure to comfort only after the battle against cancer has been lost, and both doctors and parents dread taking steps that symbolize giving up hope.

"These results will come as a surprise to the treating community," said Dr. Jane Weeks, an author of the study and a professor of medicine at the Dana-Farber Cancer Institute.

But another specialist, Dr. Elaine Morgan of Children's Memorial Hospital in Chicago, said the findings were no surprise.

"The area of end-of-life care has been largely ignored over the years," she said."The expertise required for that kind of care is very specific and has not been cultivated the way curative medicine has."

Every year, 12,400 children in the United States develop cancer. In 1998, 2,500 died, making cancer a major cause of death in childhood, exceeded only by accidents and guns.

In their study, Wolfe's team reviewed medical charts and interviewed one parent of each of 103 children who died from 1990 to 1997 and had been treated at Children's Hospital or the Dana-Farber center or both.

"There's been hesitation to contact these families out of a sense of trying to protect them," Wolfe said. "But we found the families welcomed the opportunity to finally talk about their experiences. The interviews lasted 110 minutes, on average."

A particularly important finding, the researchers said, was that the patients who had the most trouble controlling pain were those whose primary doctors were no longer involved in their care as death closed in. In addition, the patients who had the most peaceful final month were those whose parents had discussed hospice care with doctors earlier rather than later during their treatment.

Hospice care is palliative, meant to relieve pain and suffering rather than bring about a cure. It is generally provided by agencies that help families take care of dying patients at home, but Morgan noted in her editorial that the United States has very few palliative care organizations for children.

Efforts are under way to create more. In November, Congress appropriated $1-million to establish five model hospice programs later this year for children with life-threatening conditions. Children's Hospice International, based in Alexandria, Va., will help set up the programs.