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
"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
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