Ways to treat symptoms

* Pain "is a tricky thing to assess, define and treat" in children, he said. "Some of the treatments cause more pain." He added that doctors need better training in how to assess pain.

* Trouble breathing (dyspnea) can be medicated with opiates like morphine.

* Fatigue can be treated through understanding, said Dr. Davis; families need to learn when the child needs to sleep and when to expect a decreased energy level.

* The doctor called loss of appetite "a major problem for a lot of families." Because people seeing feeding others as a way to nurture them, he explained, parents can put too much emphasis on how much their child is eating. But "loss of appetite is part of the disease progression."

* Constipation and diarrhea can have a variety of causes. Dr. Davis said that diarrhea is often easier to control; but in either case, doctors must assess what's causing the problem to treat it.

"Children can tell you a lot" about what's bothering them, he added. "You have to talk to them in their own language. If they're nonverbal, there's a lot of nonverbal clues that can help. You don't want to exclude the child from that discussion."

Above all, said Dr. Davis, doctors and parents of children with life-threatening illnesses must know when to "let go of disease-modifying treatments and make comfort the goal. Nobody wants to give up, so the referrals to Hospice don't come when they should." (KB)

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