Often the child's voice is subdued. Many children are so bonded to their parents that they are essentially a unit. They withhold things to keep from upsetting parents. Some try medicines they may not want.
Others are unsure of their feelings or won't express them. Kids sometimes won't say they're in pain, experts have found, to avoid a needle stick or a return to the hospital.
That has been the experience of Dr. Ken Cohen, a pediatric oncologist at Hopkins who cares only for children with brain tumors. "The kid says, 'I know I'm dying, but I'm not supposed to say anything.'"
When children don't express their thoughts directly, there are ways to get at their feelings. "The children say a lot without saying things," said Barbara M. Sourkes, a psychologist at Lucile Packard Children's Hospital in Palo Alto, Calif..
Children may hint about their own prospects, according to the national Institute of Medicine's landmark 2002 report, When Children Die. Asked what he was going to be when he grew up, one sick child responded, "A ghost." Another boy, discovered by his mother lying stiffly on his back, explained he was practicing for his coffin.
"How taboo is this, and how lonely for parents and kids. It's our culture, and nobody should be faulted for it," said Dr. Joanne Hilden, a pediatric oncologist at the Cleveland Clinic and an advocate of improving end-of-life care for children. "But silence is way, way too intolerable."
Everyone worried about what R.J. really wanted. Dr. Higman had told him from the outset that at any point, he could stop the treatments that were buying him time. But she worried that he was doing what many young patients do, agreeing to certain things to go along with his mother.
Early on, R.J. was encouraged to make a little book to express his feelings about his cancer. He wrote that he was most afraid of "pain and misery." Of how his life had changed, he wrote, "I can't run fast anymore. I can't eat as much, and I'm not as strong."
Only in rare moments was he candid about how rough things were. In July 2002, right after he'd had surgery to insert a breathing tube, his grandmother, Carol Wisnom, watched him scrawl her a note.
"Grandmom, I can't go on like this," he wrote. "I just want it to be over."
Wisnom said she wanted to squeeze him so hard that she'd take the cancer right out of him. She felt as helpless as everyone else. She said she leaned over him, gave him a gentle hug and said the only thing she could think of. "Be strong."
As time went on, communicating with R.J. became increasingly difficult because of the effects of his tracheotomy, treatments and growing tumors. His speech was a raspy whisper.
When the hospital got him a laptop computer customized with his most frequent statements -- "I want my Yu-Gi-Oh cards" or "I want my Mom" -- his first flurry of keystrokes surprised the speech therapist.
The words on the screen piled on each other, the computer's artificial voice making pronouncements: "Sick and hungry and thirsty and hurt."
The therapist thought he was just testing the keys. "Are you all those things now?" she asked.
He nodded yes.
BIRTH OF A MOVEMENT
Well before R.J. Voigt became a patient at Hopkins, concerns about the experiences of young patients at the end of life had troubled staff members. Doctors and nurses had to go about their work with little time to talk about or digest the anguish before them. That changed in 1997, after several of their long-term pediatric patients died.
Part 2 of 4: The Angels are Coming