One Last Summer
A Day of Reckoning
Despite Higher Survival Rates, Some Suffer Too Much continued...
The study found that on average, physicians recognized there
was "no realistic chance for cure" more than three months before
parents did. However, when doctors and parents did agree on that fact early on,
there were earlier discussions of hospice care, better parental ratings of the
quality of home care their children received, and a higher likelihood that the
focus turned to easing the child's suffering instead of aggressively treating
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