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One Last Summer

A Day of Reckoning

Despite Higher Survival Rates, Some Suffer Too Much continued...

The JAMA study followed another Dana-Farber report published in the Feb. 3 issue of the New England Journal of Medicine, which found that children dying from cancer experience "substantial suffering" in the last month of life, including pain, shortness of breath, profound fatigue, and nausea.

Palliative measures could ease such symptoms but are not widely used because doctors do not know about them, the researchers wrote. Yet of the children in the study, only 27% were successfully treated for pain, 16% for shortness of breath, and 10% for nausea and vomiting, indicating that even when it occurs, palliative care is not always effective.

A New Area of Medicine That Needs Exploring

One reason doctors aren't better at dealing with end-of-life issues is that they have gotten so good at curing kids outright, says Joanne Wolfe, MD, a pediatric oncologist and lead author of the Dana-Farber studies.

"You have to understand that the history of childhood cancer is really a success story," says Wolfe, medical director of the pediatric advanced care team at Dana-Farber and Children's Hospital in Boston. "In comparison to treatment of cancers in adults, the majority of children will be cured of their disease. So the mindset in pediatrics is a model which focuses on attempts at cure."

Doctors and parents often are reluctant to consider palliative care because they believe it means giving up hope, Wolfe says, even though measures such as pain relief and psychological counseling can help children at any stage of an illness, and no matter what the outcome.

Thanks in part to continued research, and an insistence by federal regulators that each child being treated for cancer be enrolled in a clinical trial, survival rates have soared over the past 30 years, from 10% to 75% today.

Even so, cancer remains the No. 2 killer of children, behind shootings and other accidents. According to the National Cancer Institute, 12,400 children are diagnosed with cancer every year. In 1998, 2,500 children died of all forms.

Nationwide, only a handful of hospitals offer palliative care programs for children. Last year, Congress appropriated $1 million to five pilot hospice programs for children with life-threatening conditions.

According to Wolfe, palliative measures range from pain-relieving drugs such as morphine to anti-inflammatory medications and low-dose antidepressants (which can ease muscle and joint pain); to nutrition counseling to counter anemia and fatigue; to oral chemotherapy drugs that can be taken at home and may extend life, but are gentler on a child's immune system and cause limited nausea (unlike more intensive intravenous chemotherapy); to oxygen and morphine to ease shortness of breath.

Psychological help also is important, says Mary Sormanti, PhD, an associate professor of social work at Columbia University, who has worked extensively with dying children.

Guided imagery, visualization, and hypnosis can help them withstand pain and overcome "anticipatory nausea," or vomiting prior to chemotherapy, Sormanti says. Even simply reading a book aloud can distract a child during painful procedures, such as a spinal tap.

Psychosocial workers also can help parents accept the unthinkable: that their children may die. In the JAMA study, families with access to psychosocial workers were more likely to recognize that their children could not be cured, whereas parents who spoke only to physicians often came away from the conversations unaware that their children were considered terminally ill.

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