One Last Summer
A Day of Reckoning
A New Area of Medicine That Needs Exploring continued...
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 terminally ill.
How Palliative Care Can Make a Difference
In Gabe Catalfo's case, palliative measures helped ease a difficult passage.
During his last two weeks, a hospice nurse visited Gabe at home. He got a backpack-sized device that allowed him to self-administer doses of the powerful pain reliever fentanyl at will. Blood transfusions were performed at home. Phil Catalfo even arranged for a Tibetan lama to visit and soothe Gabe's spirit.
Eventually, Gabe grew weaker, stopped eating, and started drifting in and out of consciousness. It was a heartbreaking time, and yet his father describes Gabe's death as peaceful, the two of them holding hands one evening as Gabe lay on the sofa.