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In Focus: Sizing up Palliative Care for Children

By Sarah Klein

While palliative care programs have made great strides in alleviating pain and other oppressive symptoms in adults facing life-threatening illnesses, they have reached a smaller percentage of children in similar circumstances.

At best, 20 percent of children who die receive palliative care services, according to the National Hospice and Palliative Care Organization (NHPCO). [1] By comparison, the percentage of adults who died while receiving palliative care services through a hospice was nearly double that in 2007, according to the NHPCO.

Such a gap is troubling because it suggests that children facing death do not have access to the same expertise as adults to manage their pain and other symptoms, and that their families cannot turn to palliative care programs to help them make prudent health care decisions in emotionally charged situations. Indeed, a survey by the Children's Oncology Group, a clinical trial collaborative, found that only 58 percent of its member hospitals—of which there are 240 nationwide—had palliative teams available for children and their families as recently as 2005.

Further complicating matters, palliative care for children is different from that for adults, because children are in different stages of physiological, psychological, and cognitive development, and thus require age-appropriate services. These programs are often broader, as they must also address the needs of parents who are making medical decisions on behalf of their children and the siblings who are impacted by their sister's or brother's illness or death. Hours of counseling are often required to discuss medical options before death and to provide bereavement services afterwards. Because most of this care goes unreimbursed, hospices and hospitals that want to expand their services to children must rely on goodwill and philanthropy.

These problems stem from the fact that the hospice and palliative care—and the systems for payment—are organized around adults, who account for nearly 98 percent of deaths annually in the United States. The model that Medicare and commercial insurers use is predicated on the progression of cancer in adults. Patients become eligible for hospice once available medical treatments are exhausted and they agree to forgo aggressive cure-directed therapy. The only requirement is that a doctor must certify the patient has less than six months to live.

Predicting the course of a child's life-threatening illness is far more difficult. Instead of dying from heart disease or lung cancer as adults would, children more frequently die from neurological and genetic disorders, such as cystic fibrosis and muscular dystrophy, which have less linear trajectories. Children are also more resilient. They may reach the precipice of death and rebound suddenly and strikingly. Or they may die unexpectedly after playing with friends normally for several days. "The time-based prognosis is inappropriate for children. It should be dropped," says Marion M. Taylor, R.N., M.S.N., P.N.P., director of Kids Path, which provides hospice and palliative care to children, as part of Hospice and Palliative Care of Greensboro.

Even if a doctor could make such a time-to-death certification, parents making medical decisions for their children are rarely willing to sign anything promising to forgo aggressive treatment, as most consider such care warranted. "No parent is going to sign a paper that says my child is going to die, except in very specialized circumstances," says Lori Butterworth, co-founder of the Children's Hospice and Palliative Care Coalition in Watsonville, Calif.

Obtaining Waivers for Concurrent Curative and Hospice Care

The Children's Hospice and Palliative Care Coalition, which is comprised of children's hospitals, hospices, home health agencies, and individuals in California, spent seven years working to get a waiver from the federal government that would allow children to receive concurrent treatment and hospice care. The waiver, which was approved in December 2008, will be tested in five California counties this year. It is similar to existing waiver programs in Florida and Colorado.

But getting such a waiver can be difficult. State governments often aren't willing to apply for them, even when advocates can demonstrate that dual cure-directed and palliative programs save money or are cost-neutral, as Mary G. Runge, B.S.N., M.B.A., president of Horizon Hospice in Chicago, has discovered. "That's the challenge. We've offered to write the waiver. We've tried for two years," says Runge, who together with other hospices and children's hospitals instead has decided to pursue legislation that would require the state to apply. Children's Hospice International, an Alexandria, Va.-based nonprofit that has been working with federal and state governments to overcome the obstacles of waivers, also is pushing for a legislative solution that would allow states to offer dual curative and palliative care services.

In the meantime, hospices that want to extend their services to children who are still receiving acute medical care find they must raise money to do so. Kids Path, which provides counseling and support for children with life-threatening conditions in North Carolina, depends on public support. Nearly three-quarters of the program's $800,000 annual budget comes from sources like the United Way. Horizon Hospice in Illinois was able to obtain a $200,000 grant from the Illinois Children's Healthcare Foundation. But "[t]o maintain a program, we need at least $250,000 per year," Runge says. At its current level of support, Horizon Hospice is only able to care for 20 children per day.

Palliative care in children's hospitals—which plays an important role in helping parents make decisions about complex care, especially as their children become sicker and this care becomes more futile—goes largely unreimbursed.

Improving Pediatric Palliative Care Through Education and Quality Measurement

In the meantime, the specialty of pediatric palliative care is slowly advancing. Within the last decade, three medical centers—Akron Children's Hospital, Children's Hospital Boston and Dana-Farber Cancer Institute, and Children's Hospital of Philadelphia—started fellowship programs. Each graduates one fellow per year in the specialty.

Chris Feudtner, M.D., Ph.D., M.P.H., director of research for the Pediatric Advanced Care Team, which provides palliative care at the Children's Hospital of Philadelphia, would like to see that number increase to 10 fellows per year. "Without an adequate pipeline, we have several problems. We don't build programs; without programs that are staffed by people devoted to this, we don't attract the best and brightest," he says.

"We're not going to have a pediatric hospice and palliative care program on every corner, nor should we," says Sarah Friebert, M.D., director of the Haslinger division of pediatric palliative care at Akron Children's Hospital in Ohio. But most hospices need help training staff how to work with children. "A lot of kids are isolated in areas where there is an adult hospice that has good intentions, but doesn't have people who are trained appropriately. They may want to do the right thing but are constrained, not only by education, but by their own financial model."

Because children's developmental levels are so variable, those providing palliative care to this population need training materials to help them communicate at age-appropriate levels. "We need education about family systems and the emotional, psychosocial, and spiritual development of children who are facing these kinds of problems," Friebert says. Training in cultural competency is also important, she says.

Fortunately, more hospice organizations and medical institutions are developing child-specific content. The Center to Advance Palliative Care has added two pediatric palliative programs—one at Akron Children's Hospital, the other at Children's Hospitals and Clinics of Minnesota—to its roster of Palliative Care Leadership Centers. Both institutions will provide training and education to hospitals and hospices that want to improve their services for children. Harvard Medical School's Center for Palliative Care also has added a pediatric palliative care track to its program for physician and nurse educators.

The field also needs more quality measures and benchmarking tools. "We have to set up quality metrics that make sure that we are neither overdoing or underdoing it" when it comes delivering care at the end-of-life, Feudtner says. "We're trying to protect these children and families from being uncomfortable, from pain that could be assuaged, from symptoms that could be ameliorated, but we are also trying to prevent medical mayhem, where things get out of control."

Feudtner says hospitals need to compare utilization of interventions such as the use of opioids to manage pain. They also need to determine the number of children who die in the hospital after 72 hours and do—or do not—have do-not-resuscitate orders in place, to gauge whether clinicians are discussing advance directives with parents. Hospitals would also benefit from comparing their performance on more refined quality measures such as pain scales and symptom burden, he says. "We also have to be practical; that type of assessment costs a lot of money and that data is not going to be available anytime soon."


[1.] This number is a very rough estimate based on a small sample of hospices across the United States. The actual figure may be far lower.

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