Decision time can be difficult when the patient is young

Harsh medical treatments yield to comfort care.
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.
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 California Legislature moved toward making it 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, will let seriously ill children receive hospice and palliative care without having to forgo medical treatment that might cure them or prolong their lives. The act is expected to be implemented next year.
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.
Managing symptoms
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 the University of California, Los Angeles. "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.

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