"Did any of us actually decide to stop?" Chris still asks, almost two years after her son, Sam, died of cancer at the age of 17. Discontinuing treatment was not an option. Sam had decided he was willing to tolerate as many rounds of cancer drugs as his body could stand. "Nobody knows the future," Chris says. "And nobody has the right to take a kid's hope away."
When a patient is a child, or a young adult, the decision to stop aggressive treatment involves the same equation that older people consider. Patients and their families weigh the pain and suffering of treatment against the likelihood of success. But when there are potentially decades of unlived life ahead, the answer is likely to tilt urgently toward continuing treatment, even if it is only remotely promising. "It's different with kids," says Chris, of Los Angeles, who does not want her family name used. "It's unthinkable that there isn't more life to be lived."
For younger people, the hospice rule requiring a prognosis of six months or less to live can be too cruel a dose of reality. The choice for patients has long been stark: give up aggressive treatment for comfort care, or continue medical interventions, and risk sacrificing quality of life.
Last September, the state Legislature made it at least a little easier for the 10,000 to 14,000 California families facing heart-wrenching options for their youngsters. The Nick Snow Children's Hospice and Palliative Care Act of 2006, named for a child with a brain tumor who "flunked" hospice care twice when his condition temporarily improved, lets seriously ill children receive hospice and palliative care without having to forgo medical treatment that might cure them or prolong their lives.
Palliative care, a relatively new field of medicine, can help bridge the either-or gap. It's a lot like hospice but can step into a patient's life sooner, before the last six months of life or before someone is ready to give up on medicine.
Specialists in palliative care emphasize pain and symptom management; coordinating family, individual and spiritual counseling; understanding the patient's treatment goals; and ensuring that the whole medical team understands the patient's and family's wishes. Meanwhile, medical treatment continues.
Treatment might buy precious time. For children, that might mean experiencing a first prom, camping trip or part in a play. Refraining from treatment, on the other hand, might buy a child enough comfort, free of side effects, to live a more normal life.
"We've had children who were expected to die, and they lived an extra year and a half," says Dr. Lonnie Zeltzer, director of the pediatric pain program at Mattel Children's Hospital at UCLA. "What we do may involve curative medicine, or not. It's not either-or. It's different from the past concept of hospice which was seen as 'give up' medicine. What parent wants to give up on a child?"
Most parents, and children old enough to be involved in treatment decisions, want to go all the way with medicine, says Elana Evan, a psychologist and coordinator of the pediatric palliative care program at Mattel. They need frank discussion about what the chances are and the likely outcome. Palliative care provides a communication bridge between the family members who know the child best and the specialists treating the child. What food do they like, what toys do they need with them at all times? Do they want medical details or prefer not to know? "It's such a fine balance," Evan says. "It's offering hope while still presenting the larger picture."
Some older children make a decision similar to Art Buchwald's, telling their parents that they can go no further -- such as Kabir Sekhri, a 14-year-old who traveled from New Delhi for leukemia treatment in Washington, D.C., according to a Jan. 11 story in the Washington Post. Chemotherapy and a bone marrow transplant had not eradicated his cancer. Rather than endure more, he wanted to go home.
Zeltzer recalls a teenage patient in Los Angeles who went through three heart transplants. Her body rejected them all. Her parents wanted her to try again, but when she insisted she wanted no more, they agreed, in consultation with the palliative care team, that it was her choice.
Sam was never ready to call it quits. Still, Chris says, his family learned from working with his care team that there had to be more in his life than cancer. "He needed to get to places that were important to him -- school for finals, drama camp for the big performances, a trip to Chicago with his dad," she says. Sometimes that meant a break from chemo. "We learned that quality of life does, in fact, trump a panicked need for more chemotherapy."
But it was Sam, Chris says, who wanted to push on, even as a second osteosarcoma tumor was diagnosed in his jaw, heartbreakingly just as the cancer in his leg appeared cured. As his body weakened, Zeltzer visited him at home. She urged him to take morphine, which he resisted because he feared it would sap his energy. "I told him that if he took it, he could get some rest and then feel better," Zeltzer says.
He took the morphine and was able to get the sleep he needed. His last few days were a kind of respite, spent talking with his family and even learning a new video game.
"Sam died with chemo in the fridge that he said he wanted to start the next week," Chris says. "That was the goal: to preserve Sam's dignity, and that he remain in charge of his treatment."