Children With Terminal Cancer Suffer More Than Necessary
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
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
"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."
- 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.