Study: Many kids dying of cancer suffer needlessly

Children dying of cancer sometimes suffer more than necessary because doctors try so hard to cure them that they do not pay enough attention to easing symptoms, researchers say.<br><br>It's entirely

Wednesday, February 2nd 2000, 12:00 am

By: News On 6

Children dying of cancer sometimes suffer more than necessary because doctors try so hard to cure them that they do not pay enough attention to easing symptoms, researchers say.

It's entirely understandable: "The life of the child is so precious, it's hard to give that up," said Dr. Joanne Wolfe.

But that approach can -- and should -- be changed, said Wolfe, an instructor in pediatric oncology at the Dana-Farber Cancer
Institute, Children's Hospital and Harvard.

Wolfe's study of suffering among children with cancer was published in Thursday's New England Journal of Medicine.

The hard fact is that one-quarter of all children diagnosed with cancer will die of it. That is considerably better than it used to be -- 30 years ago, the death rate was 90 percent.

But when the researchers talked to parents of 103 children who had died of cancer between 1990 and 1997, they were told that 92 had suffered "a great deal" or "a lot" from at least one symptom. More than half had suffered significantly from at least three symptoms.

Fatigue, pain, trouble breathing and poor appetite were the most common complaints. Nausea and vomiting, constipation and diarrhea were next. More than 80 percent of the children hurt. Most of them were treated for the pain, but only 27 percent of those felt
better.

Fifty of the children were still getting cancer treatments, such as radiation, chemotherapy or a bone-marrow transplant, in their last month alive. Seven died in the bone-marrow transplant unit.

"For most children with cancer, the primary goal of treatment is to achieve a cure," Wolfe wrote. "Considerations of the toxicity of the therapy, the quality of life, and growth and
development are usually secondary to this goal."

Parents of children who died from cancer said the article made an important point. But they also felt that doctors did everything they could to relieve suffering.

"It is very difficult, especially in the late stages of a difficult struggle, to focus on relieving the pain and balancing that with whatever treatments may still exist," said Chris
Hoefflin, whose son, Michael, died from brain cancer in May 1996.

The findings indicate that doctors "were pushing for a cureeven to the end, not knowing exactly when to stop," said Marilyn
Hockenberry-Eaton, an associate professor of pediatric hematology and oncology at Baylor College of Medicine and director of nurse
practitioners at Texas Children's Cancer Center.

She praised the article.

"We have created very successful treatments for childhood cancer, but on the way, something's had to go," she said. One of
those things, she said, is a focus on relieving symptoms of terminally ill children.

"It's not like its overlooked, but it's not emphasized," she said.

Hockenberry-Eaton said parents often do not want their children to get opiates for pain, either because they are afraid of addiction, or because it seems to represent acknowledgment that the disease is terminal.

Although a number of studies have found "suboptimal" quality of care for dying adults, high-quality care to relieve symptoms is now an expected standard, Wolfe wrote. The researchers looked at whether the care of children with cancer met that standard.

Early findings from the study prompted Dana-Farber and Children's to set up a team in 1997 to help parents, doctors and nurses ease the hurt for dying children.

The team created a worksheet to help parents, doctors and nurses recognize symptoms and treat them. It is working on a diary to help
parents keep track of the symptoms and treatments.

It has helped parents figure out how to let a toddler visit her dying brother, also a toddler, without scarring her emotionally. And with the same parents, the team discussed the painful question of when to stop treatment.

"Sometimes people think that will extend life, but in this case it would only have increased his suffering," said Janet Duncan, an
oncology nurse at Children's. "So the family was able to do that, and make handprints with him that they could keep, and really be
together to say their goodbyes."