May 15, 2000

During his last month of life, 2-year-old Tyler Volenec lay on his bed in too much pain to watch his beloved Barney on television. The little boy's pain was so great that he cried when his mom touched him, when she tried to speak to him, or when she turned on the lights. Just a few months had elapsed since Tyler was first diagnosed with leukemia.

"I've never seen anyone suffer like that in my life," says his mother, Chicago resident Megan Volenec. Tyler was given chemotherapy with the onset of the disease, and after a relapse, doctors proposed another round of chemotherapy treatments, which, if successful, would prepared him for a bone marrow transplant. The doctors assured his family that the pain he experienced from the chemotherapy could be controlled.

But when the pain came -- and it came within three days after the first treatment, says his mother -- nothing worked to alleviate it. When the family pleaded for relief for their son, doctors were slow to act, says Volenec. In addition, Tyler had a serious bout of pneumonia that went undiagnosed for two weeks. "All they were interested in," says Tyler's mother, "was the cancer and the [white blood cell] counts going up. They didn't look beyond that." On Valentines Day, 1999, five months after he was diagnosed, Tyler died.

Documenting children's suffering

It's kids like Tyler that pediatric oncologist Joanne Wolfe, M.D., M.P.H., and a team of researchers were concerned with in their study "Symptoms and Suffering at the End of Life in Children With Cancer," published February 3, 2000, in the New England Journal of Medicine (NEJM). The study's findings are based on interviews with parents of children who died of cancer between 1990 and 1997 and who were cared for at either Children's Hospital or the Dana-Farber Cancer Institute, both in Boston. Wolfe writes that children who die of cancer suffer greatly from pain, profound fatigue, shortness of breath, and other symptoms. According to parents surveyed, 89 percent of those children have substantial suffering from at least one such symptom in their last month of life.

Among the children who were treated for specific symptoms, treatment was successful in just 27 percent of those with pain and 16 percent with breathing difficulties. Indeed, although physicians pursue treatment for cancer aggressively in their young patients, they often do not provide adequate care for pain and discomfort. "Greater attention must be paid to palliative care for children who are dying of cancer," concludes Dr. Wolfe in the published study.

Physicians respond

"Dr. Wolfe's study presents a very long-overdue analysis of end-of-life symptoms in children with cancer and the successful treatment of those symptoms," comments Somasundaram Jayabose, M.D., chief of pediatric oncology at New York Medical College-Westchester Medical Center, in Valhalla, New York. Dr. Jayabose says he agrees wholeheartedly with the premise that physicians need to pay more attention to quality-of-life issues during young patients' last months and explains some of the reasons why such care is not given.

"As physicians, we are trained to cure, not trained to support the dying patient. We lack training in that and must acquire it on our own," says Dr. Jayabose. And curing patients is a very exciting prospect these days. "We are now able to cure 70 to 80 percent of patients, as opposed to only about 50 percent about 25 years ago," he explains. "Moreover, doctors are to some extent obligated to try these new treatments to cure the cancer. But at the same time we have to know when to stop."

Making the case for aggressive therapy

Stuart E. Siegel, M.D., director of the Childrens Center for Cancer and Blood Diseases at Childrens Hospital Los Angeles, takes issue with the statement that pediatric oncologists are often too aggressive in pursuing a cure. While he believes that good palliative care is critical, he also asserts that the NEJM report did not give enough consideration to families that are unwilling to give up on trying new treatments -- even when the chances of a positive result are very small or when the benefits are likely to be brief. "While we don't want to offer false hopes to those families, it is very important that we do not deny those needs," Dr. Siegel says.

Dr. Siegel, who is also a professor and vice-chair at Keck School of Medicine at the University of Southern California, agrees with the authors of the NEJM report that pediatric oncologists and pediatricians have much to learn about certain aspects of caring for terminally ill children. "Certainly," he says, "there are some families that accept the fact that the child's chances of a positive outcome -- even of an extension of life -- are very small and are comfortable with saying, 'Let's focus on the palliation. My child has had enough.' And that's fine."

When it's time to let go

One reason to focus on palliation is that the more aggressively a cure for the disease is pursued to the end, the more likely the child is to experience pain and other symptoms, explains Dr. Jayabose. "If you stop leukemia treatment, for example, you may have pain from leukemia," he notes. "But you can probably control it better because you are going to concentrate on pain management."

Dr. Jayabose contends there is a definite point at which curative medical procedures should be curtailed. "If the child has relapsed two or three times and it is clear nothing is going to cure the child, then we need to sit down and talk to the parents. It's important to discuss the fact that the longer you pursue curative treatment, the more likely the child is going to end up in the hospital in the last days, and most of it is going to be in the I.C.U.," he says. "This is the time to go to Disney World or to do whatever the child wants to do." Indeed, 49 percent of the children in Dr. Wolfe's study died in the hospital. Nearly half of these deaths occurred in the intensive care unit.

One of the things the NEJM report didn't mention, notes Dr. Jayabose, was the difference between the comfort of children who died at home versus those who died in the hospital. "I'm pretty sure quality of life for children who died at home is much better," he says. "Because once you decide the child is going to stay home, that itself tells you we have given up on further fighting the disease, and now will focus on the quality of life."