Children With Terminal Cancer Suffer More Than Necessary

From the WebMD Archives

Feb. 2, 2000 (Baltimore) -- Children who are dying of cancer may not be receiving adequate care to relieve pain and other symptoms -- palliative care -- at the end of their lives, according to a study published in the Feb. 3 issue of TheNew England Journal of Medicine.

"The good news in this country is not many children are dying of cancer," says study co-author Ezekiel Emanuel, MD, PhD, chair of the department of clinical bioethics at the National Institutes of Health in Bethesda, Md., in an interview with WebMD. "But the bad news is that, with those kids who do die, we're not doing a great job."

The researchers interviewed parents of more than 100 children who died of cancer and had been cared for at Children's Hospital in Boston or the Dana-Farber Cancer Institute, also in Boston, or both between 1990 and 1997. Parents were asked about their child's symptoms in the last month of life, including pain, nausea, vomiting, and difficulty breathing, among others. They were also asked about their child's mood, the quality of communication with their child's health care providers and the quality of care, and whether their child's death was peaceful.

Most of the parents interviewed -- 89% -- said that their child had suffered "a lot" or "a great deal" from symptoms in their last month of life. Most identified fatigue as the most troublesome symptom, followed by pain, difficulty breathing, and poor appetite. Suffering was most likely to be reported by parents who also said that their child's physician was not actively involved in their end-of-life care.

Elaine Morgan, MD, associate professor of pediatrics at Northwestern University in Chicago, wrote an editorial accompanying the study. In an interview with WebMD, she says, "I think the most important thing to emerge from this study is that we need to pay a whole lot more attention to these end-of-life issues in children. I think we need to take a team approach to the problem, involving the primary care team as well as experts in end-of-life care."

According to Morgan, at least two barriers to providing coordinated palliative care for dying children exist. "Physicians in general are poorly educated and uncomfortable with end-of-life issues, and may hesitate to stay involved," she says. "In addition, coordination between these caregivers can be tricky. I think it is necessary, however, not just for the emotional health of the dying child and the family, but also for the physician."

"We have a very good chance to effect change in palliative care standards in this country since the vast majority of kids with cancer are treated at relatively few centers," says Emanuel. "If those places really attend to this issue, the situation can be much improved."

Vital Information:

  • Researchers report that children with terminal cancer may not be getting the care that keeps them comfortable during the final weeks of their lives, according to more than 100 telephone interviews the researchers conducted with the children's parents.
  • Nearly 90% of the parents told researchers that during the last month of life, their child suffered "a lot" or "a great deal." (Fatigue was the most common discomfort reported, followed by pain, difficulty breathing, and poor appetite.)
  • The researchers and observers alike say the study shows that much improvement in this type of care is needed. But they are optimistic that treatment can get better quickly, because only a few facilities in the U.S. treat children who have terminal cancer.