The researchers, led by Joanne Wolfe, MD, MPH, a children’s cancer doctor at Dana-Farber Cancer Institute in Boston, interviewed the parents of 103 children who lost their lives to cancer between 1990 and 1997.

The study found:

• 89 percent of parents reported their children suffered "a lot" or "a great deal" in their last month of life from pain, fatigue, or difficulty in breathing.
• Almost 80 percent of the children suffered from pain, and efforts to eliminate pain worked only 27 percent of the time.
• When aggressive efforts focused on curing the disease continued longer than reasonable hope remained, treatments that could better relieve pain and other symptoms began too late.
• Pediatric oncologists were sometimes unaware of the extent of the children’s suffering.
• Pain and other end-of-life symptoms were more likely to be dealt with successfully if the primary care physician remained involved in the child’s care.

Attention to some basic principles can improve the situation dramatically, according to Terri Ades, MS, AOCN, director of health content nursing staff for the American Cancer Society (ACS). "We have the ability to provide adequate pain control and relief from many other symptoms today," Ades said.

Communication is important, she said. "Parents spend more time with their children, and know more about their children and their response to their illness than the physician, and parents can influence the care of their child by talking with their doctor. Both parent and physician have important roles in the care delivered to the child."

Sometimes an honest discussion is needed to clarify the purpose of treatment. "The physician and parent must be clear about the goals of the treatment at any time," Ades said. "If cure or survival are no longer realistic hopes, then at some point, the focus of care must turn to end-of-life care. Here treatment focuses on the quality of the child’s life and helping the child feel comfortable."

The study found controlling symptoms seemed to be more effective if the primary care physician remained involved in the child’s care. "The primary care physician knows the most about all aspects of the child’s life," Ades said. "The parent has a long-standing relationship with this physician, making communication easier, so the doctor could be the conveyor of information between oncologist and parent, if not in person, then by phone."

While the results of this study can’t be generalized to all children with cancer or all institutions, they are important, according to Ades. "We’ve made important advances in pediatric oncology and each year, survival rates improve. For those children who cannot be cured, we can improve the quality of their life by relieving their suffering."

Although cure rates for childhood cancers have risen from 10 percent in the 1950s to more than 70 percent today, cancer still kills about 1,600 children every year in the US, more than any other causes except firearms and accidents.