LA Times article
This was in yesterday's Los Angeles times. Too bad the writer thought
Neuroblastoma was a brain tumor, but she wrote and printed a correction in the
next paper.
Matter of young life and death
When the patient is a child, weighing options can be even more heart-wrenching.
By Susan Brink, Times Staff Writer
February 5, 2007
"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."
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FOR THE RECORD:
End of life: A Health section article Monday on end-of-life care for children
said the Nick Snow Children's Hospice and Palliative Care Act of 2006 had passed
the state Legislature in September and that children could now receive medical
intervention and comfort care without losing insurance coverage on either.
However, that act has not yet been implemented; it is expected to be launched
next year. -
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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."