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
How Palliative Care Can Make a Difference
In Gabe Catalfo's case, palliative measures helped ease a
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.