A chaplain knows, for instance, how the physician and nurse are addressing the patient’s medical needs, and the physician is aware that the chaplain is supporting the parents and, in some cases, the child, she said in an interview.
"Having shared goals of care and strong communication is also important so that everything doesn’t have to be explained every time a shift changes or a patient is transferred to a different setting," she said.
"Most of these pediatric palliative care teams are fairly newly established," she noted. "There was some pediatric palliative care before then, but not necessarily with a strong team approach."
Dr. Nageswaran, who led the establishment of the first pediatric palliative care program at her hospital in 2008, said she was struck by the amount of coordination needed to provide good palliative care and by the flexibility needed to design a good program.
She and her colleagues started the program as a consult service for children who were hospitalized with complicated, often life-limiting conditions. The service used a half-time nurse coordinator, a one-quarter full-time equivalent (FTE) clinician post to be shared by a handful of physicians for rotating on-call duty, and a 1% FTE post for a physician coordinator.
"Very soon, we realized that the biggest need was to facilitate collaboration between multiple providers and to ensure sufficient continuity of care as these children transition back and forth from the hospital to home," Dr. Nageswaran said in an interview. "We weren’t achieving this with the traditional consult model where we’d see patients in the hospital and leave recommendations for the primary medical team."
In a subsequent restructuring, physician time was consolidated into a one-third–time FTE coordinator post, which Dr. Nageswaran fills herself, and funding was obtained from the federal Maternal and Child Health Bureau to add another half-time nurse coordinator who could focus on making home visits and coordinating home-based care in one local county.
The flexibility to coordinate care outside the hospital is critical, Dr. Nageswaran said. One of the 235 children cared for under the palliative care program thus far was a child with a rare genetic disorder characterized by skeletal abnormalities, urologic abnormalities, and severe neurologic impairment and seizures.
"The family wanted end-of-life care to be delivered at home, but they didn’t want to forgo medical care," Dr. Nageswaran recalled. "We went step-by-step, aligning the family’s wishes with the care the child received. We worked with the primary care doctor, the subspecialists, the home health agency, and the parents to provide medical treatment, pain and symptom management, and other care at home."
Both she and Dr. Friedrichsdorf emphasized the value of open inquiry with parents, children and families.
"Each family is unique in how they perceive illness and how they make decisions about treatment and end-of-life care," said Dr. Nageswaran. "When we meet families, we meet them without a set agenda, and we make sure we don’t impose our structure."
Similarly, Dr. Friedrichsdorf said, "When I enter a room, the first thing I say is, ‘How can I help you?’ We start with that open question." At that point, he said, surveys or other structured tools can be used to help determine needs and care plans.
One of the thorns in the field of pediatric palliative care is the unavailability of hospice services for many children, given the prognostic uncertainty of most childhood life-threatening conditions and the desire for continued treatment. Currently, most families have to forgo home-health services in order to receive hospice services.
Some states have taken action; policy reform passed in California in 2006, for instance, makes it easier for parents to utilize the Medi-Cal hospice benefit for children. A section of the federal Patient Protection and Affordable Care Act, moreover, is expected to change the Medicaid system to allow children with life-limiting conditions to receive both hospice care and curative treatment.
Another problem is poor provider reimbursement. "Physician services are reimbursed, but not enough to account for the amount of time involved," said Dr. Nageswaran. "\"And the services of nurses and social workers, who are key to pediatric palliative care programs, are not reimbursed."
She jump-started her program with a grant from the Duke Endowment, a private foundation, but now relies primarily on financial support from the hospital. Dr. Friedrichsdorf estimates that his hospital is reimbursed for only about half of its costs, and says that it relies heavily on philanthropy to make up the difference.
Philanthropy recently benefited the pediatric palliative care program at Akron (Ohio) Children’s Hospital. With $1.2 million in donations from the Haslinger Family Foundation (pdf) and other leadership gifts, the hospital has created an endowed chair for its services, which began in 2002.]