One Last Summer
A Day of Reckoning
Jan. 29, 2001 (Berkeley, Calif.) -- Gabriel Catalfo spent his summer doing what teenagers usually do. He hung out with friends. He went to camp. He scared the daylights out of his parents by going skydiving.
Then, that fall, he died.
Gabe's death, in November 1998, was no surprise. In fact, he had been dying all summer long, ever since tests in June revealed that his cancer had invaded his bone marrow.
Diagnosed with acute lymphocytic leukemia at age 7, by 15 Gabe already had undergone two rounds of intensive chemotherapy plus radiation. Neither punch seemed to faze the cancer. Within months of each, his leukemia was back.
A bone marrow transplant in August 1997 was Gabe's last, best hope. When he relapsed again the following June, so did any chance of beating cancer for good. At a time in medical history when three out of four children with cancer can be cured, the goal of Gabe's doctors and parents became agonizingly modest.
"They weren't trying to treat the disease in any kind of a meaningful way," says Phil Catalfo, Gabe's father. "They were trying to keep a lid on it, and they were trying to support him to have as decent a life as he could."
Yet Gabe lived longer and more richly than anyone imagined -- a full five months of jet-skiing, skydiving, and playing with his dog, until his weakened immune system gave way to a powerful fungus infection.
"Gabe had that kind of magnetic personality that everybody took a shine to," says Phil Catalfo. "He turned something on in people, and also he was so heroic in the way that he approached his treatment. Even with every setback, [the doctors] really felt they were going to save him." Until, one day, they couldn't.
Despite Higher Survival Rates, Some Suffer Too Much
Cases like Gabe's are drawing more attention to the increasing need for children's palliative care -- treatment aimed at easing the suffering of those with advanced or incurable disease.
In November, researchers at the Dana-Farber Cancer Institute in Boston published a study in the Journal of the American Medical Association based on a survey of parents of 103 children treated from 1990 to 1997 who died of cancer. The children ranged in age from 3 to 18 years of age; the average age at death was 11 years.
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.
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.
Later that night, Gabe's sister, Jessamine, had a dream about her brother. Was it easy to die, she asked him?
Yes, he answered, it was -- just like breathing. "And then he said, 'It feels so good to walk again.'"
Beatrice Motamedi is a health and medical writer based in Oakland, Calif., who has written for Hippocrates, Newsweek, Wired, and many other national publications.
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