Finding Funding For Pediatric Palliative Care Programs

The benefits of a PPC intervention are obvious, but financial barriers are tough to grapple with.

With ongoing healthcare reform initiatives, there has been a lot of emphasis placed, in recent years, on the “triple aim of healthcare,” that is, to improve patient experience of care, improve overall population health, and reduce per capita costs of health care.

One type of initiative that does seem to hit all targets in the “triple aim” is the establishment of pediatric palliative care centers (PPC) in hospitals. But if that’s true, why then are there so many barriers to establishing them?

That was the central question that guided a discussion at the American Academy of Hospice and Palliative Care Medicine Conference held in Philadelphia recently. Panelists Sarah Friebert, MD, of Akron Children’s Hospital, and Stefan J. Friedrichsdorf, of Children’s Hospitals and Clinics of Minnesota, both discussed the issue at their talk: “A Key Ingredient in the Financial Case for Pediatric Palliative Care.”

Friebert noted  although the benefits of a PPC intervention are obvious – treatment for the child, support for the families, a “medical home” environment for all – financial barriers are tough to grapple with. However, she said, “we are moving into a new world.” 

She noted several areas where financial barriers can be overcome, including soliciting donations and the recently-enacted Concurrent Care for Children Requirement.

She said that while asking for money for programs like this may be outside of a physician’s comfort zone, she offered this advice, which was once imparted to her about raising donations,:”Put your pearls on and go on and ask for money, because people want to give money to good causes and to people they know. I had to get over myself and recognize this is about revenue stream (for the program).” 

Friebert acknowledged that obtaining donations does require significant work in terms of time and energy on the part of the hospital and the doctors. Follow-up with the donors is just as time consuming, and just as important. “The donors expect program sustainability,” she said. “You don’t want them to think they are the only thread between the program and financial ruin.”

As such, diversifying income stream by applying for grants is also important, she said. Also reaching out to families and private local funders for programs are key. Finally, the hospital itself is important for funding. 

“Why would the hospital want to support this? Well, number one it’s the right thing to do, but also, there’s recognition of a program like this and the halo effect that brings,” Friebert said, adding that families often want to come to hospitals with programs like these. Other effects include improved quality and safety profiles (such as prevention of hospital-acquired conditions or improved throughput), improved patient, family and staff satisfaction, and potential cost avoidance.

She added that Concurrent Care for Children is making a big difference for PPC programs as well. 

On March 23, 2010, President Obama signed the Patient Protection and Affordable Care Act (PPACA) into law enacting a new provision, Section 2302, termed the “Concurrent Care for Children” Requirement (CCCR). Before the ACA came into effect, she said, families were often put in the position of having to choose either hospice or curative care. With this act, they don’t have to make that often times difficult decision.

“The bottom line of this is the family elects hospice care, but this does not waive their rights to have covered services related to the treatment of their child’s problems at the same time,” she said, adding the number of issues that can be addressed in PPC , from medicines to cure infections, to pain management, to counseling.

Benefits of a PPC Program

Friedrichsdorf noted that no matter how the funding comes about, a good PPC intervention has been shown to be a “beneficial treatment, that increases quality of life and may, in fact, lead to prolonged life.” He noted several studies that showed an association between early initiation of palliative care and associated improvement of symptoms.

The most important thing, both panelists noted, is that pediatric palliative care is family-centered. A PPC can assist with communication and coordination of care. With this communication, families are better armed to choose options that are in line with with their values and traditions, Friedrichsdorf said. This improves the well-being of the entire family, making a PPC a great option for hospitals.


1. Postier-Nugent A, et al. J Palliative Med, 2014; (12)2: 183-188.

2. Video below.