KIDS DYING OF CANCER SUFFERING NEEDLESSLY

Study: Symptoms Ignored In Push To Cure

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
today'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."

The findings indicate that doctors and parents "were pushing for a cure even
to the end, not knowing exactly when to stop," said Marilyn
Hockenberry-Eaton, an associate professor of pediatric hematology and
oncology at Baylor Medical School 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.