In search of a gentler end
But the only hospice program near their rural Montana town had no experience or expertise with dying children, and the nearest one that handled pediatric deaths was hundreds of miles away in Billings. The family could either travel there or take him to the local hospital to die.
Two states away, Dr. Brian Greffe and the Butterfly program at Denver Children's Hospital stepped in with an option. A pediatric cancer specialist, Greffe coordinated the boy's end-of-life care from afar, making sure the child and his family got the physical and emotional support they needed. He said the boy died peacefully in his own home three days later.
Colorado's Butterfly program is at the forefront of a national movement to improve care for seriously ill and dying children. It got a big boost earlier this year when Colorado became one of the first states to win a waiver from Medicaid, the joint federal-state health program for the poor, to pay for services outside of a traditional hospice program for these children and their families.
Many other states are now pursuing waivers or starting similar pilot programs, often adapted from a model developed by Children's Hospice International, an advocacy group outside Washington D.C.
Details vary from state to state, but the goal is to offer babies, young children and teens Medicaid coverage for better pain and symptom management for their afflictions, decision-making guidance for their families, emotional support and even some respite care, which provides relief for caregivers. When possible, the children are kept out of hospitals and nursing homes and treated at home.
Advocates for better care for the dying call this "concurrent care" - a blend of aggressive treatment aimed at curing disease alongside the end-of-life care found through hospice.
Beyond 'comfort care'
Unlike traditional hospice, this approach isn't limited to patients expected to die within six months; the waivers allow coverage for children earlier in the course of a fatal disease, or for those who may endure years with diseases like cystic fibrosis. And unlike most hospice programs, it won't force patients - or their parents - to make the difficult decision give up treatments, aimed at curing or slowing down their disease, in order to get "comfort care."
But despite some recent progress, this special blend of services is still rare.
"It's an embarrassment. With all our resources, children are dying in pain, children are dying away from their parents, and without enough support for them and their families," said Dr. Carlos Gomez, part of a team at Georgetown Hospital and National Children's Medical Center taking the first steps toward a Medicaid waiver for Washington D.C.
About 53,000 U.S. children die every year (including accident and homicide victims), according to Children's Hospice International. About 1.3 million have serious chronic diseases such as cystic fibrosis, muscular dystrophy or cerebral palsy.
Several millions more with diseases like diabetes or asthma could face life-threatening complications or debilitating declines. But the National Hospice and Palliative Care Organization estimates that fewer than 7,000 children receive hospice services each year, and most babies and children die in hospitals.
Many low-income families with sick children qualify for Medicaid - and therefore traditional hospice care - but the waivers would cover other costly treatment. Even those families who don't start out poor often become poor as they struggle with medical bills and care-giving demands that interfere with their jobs, experts say.
"They're not just heartbroken. By the time they reach our front door, they're also bankrupt," said Annie Berlin, a spokeswoman for the George Mark House in northern California, the only freestanding respite house and hospice for children in the country.
The U.S. Centers for Medicare and Medicaid Services (CMS), which works with states to administer the Medicaid program, said it has been giving technical advice to a number of states developing waiver proposals and is trying to expedite applications, although it would give no details. Children's Hospice International estimates about a dozen states across the country are developing waiver applications or starting pilot programs.
Florida has a Medicaid waiver, approved in 2005 as part of changes to the state's Medicaid managed-care program that serves seriously ill poor children. Nearly 1,000 young people have already been served by the program, according to Ann Armstrong-Dailey, founder and director of Children's Hospice International.
California is moving quickly and aims to submit its waiver plan by January. With the approval of the state Legislature, the state Department of Health Care Services is planning to have programs in several counties by 2009, said Dr. Marian Dalsey, a pediatrician working for the state Health Care Services Department. The new programs will build on an existing one that serves 162,000 children with complex or life-threatening conditions whose care is now coordinated by major medical centers.
"We want to keep the children out of the hospital and provide the family with services they need," Dalsey said. That will include bereavement support for families both before and after a death, better care coordination, and activity therapies like art, music and dance.
But in Kentucky, after eight years of efforts, teams report that its pediatric palliative care program called HUGS -Helping "U" Get Support - has been delayed, in part, because of high personnel turnover in its state Medicaid program and accompanying shifts in priorities.
Federal rules require that the hospice waivers don't add to Medicaid's costs. But Armstrong-Dailey of Children's Hospice International said the programs should actually save money overall by keeping these children out of emergency rooms and hospitals. She said Colorado estimates it is saving about $22,000 per child each year. The Denver program serves children as both outpatients and inpatients in several Rocky Mountain states, including that boy in Montana.
"We really have gotten the word out. We're changing the culture. Pediatric palliative care from the time of diagnosis is a very new thing," Greffe told a policy forum in Washington, D.C., earlier this year.
Ideally, advocates of pediatric palliative care say they would like to see a federal solution instead of 50 different states going through a cumbersome waiver process, but Congress has not yet acted.