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One Last Summer

A Day of Reckoning
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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 cancer.

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 studies.

"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 75% today.

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