CNS PHOTO | SETH DIXON COURTESY ST. JUDE CHILDREN'S RESEARCH HOSPITAL
Dr. Justin Baker is chief of palliative care at St. Jude Children's Hospital in Memphis, Tenn.
Except for sharing a name, palliative care and hospice for children has little to do with providing the same services for adult patients.
"Children aren't little adults, and caring for them is different," says Barbara Roberts, executive director of Providence TrinityCare Hospice Foundation, which runs TrinityKids Care, a pediatric hospice program in Los Angeles.
"Often adults are at the end of a long and wonderful life, and doctors know what that progression looks like," Roberts said. "But a child might have something incredibly serious that has to be reviewed and treated . . . and (he or she) may still be growing. . . . It's really challenging for anyone's expertise."
In addition to the medical challenges, there are myriad of emotional consequences to a child's illness that must be dealt with, she said.
"No matter who is on hospice, the entire family needs support," she said. "A healthy sibling might wonder, 'Did I do something?' 'Am I going to get sick next?' . . . We spend a lot of time really helping the whole family, with a particular focus on the siblings."
Only a tiny percentage of the younger population can benefit from palliative care.
According to the Annual Summary of Vital Statistics, 2.4 million Americans died in 2009. More than 21,000 of them were between the ages of one and 19, but the leading causes of death were accidents and homicide.
Dr. Justin Baker, chief of the Division of Quality of Life and Palliative Care at St. Jude Children's Research Hospital in Memphis, Tenn., said palliative care and hospice for children usually takes place over a much longer period than that provided for adult patients.
"In the adult world, the length of time on those services is quite small and the mortality rate is high," he said. "In pediatrics, there is much more care of those with complex chronic conditions," which are both "significant and life-threatening."
Although these younger patients do have a high mortality rate, they are much more likely than adults to be alive a year after their initial consultation with the palliative care specialists, Baker said.
In addition, he said, while adult patients tend to stop receiving extraordinary care when they enter hospice, pediatric patients "frequently will require significant interventions even during end-of-life care." That may include a ventilator, feeding tube or chemotherapy concurrent with hospice care.
Baker said his division's main goal is to instill in every staff member at St. Jude an understanding of "integrated palliative care" that benefits each patient from the moment he or she arrives at the hospital and extends back to their homes for the 60 per cent who return there.
As early as the registration process, the child's pain level is assessed and comfort care begins as needed, Baker said. An hour later, the patient's pain level is re-evaluated and further efforts are made to ease his or her pain.
Only about one-fifth of new patients are referred directly to Baker's division for a consultation, he said. The rest receive palliative care through their primary care team.
Baker said a "massive part of our job" is providing phone consultations and coordinated care for St. Jude patients who have returned to their homes.
"It's a very scary time when they think of leaving the safety net of this place," he said. "We're able to say, 'St. Jude is going there with you.'"