Lack of Payment, Training Curtail Pediatric Palliative Care

Children who have life-limiting illnesses need palliative care as much as adults, but a slough of obstacles often prevents them from getting it.

Many of the barriers that palliative care providers encounter — fears, misconceptions, limited reimbursement, lack of specialized clinical training — become even more complex when it comes to pediatrics.

The bulk of the care these children receive comes from primary care or subspecialty providers, and many experience frequent hospitalizations, according to research by the American Academy of Pediatrics (AAP). Few seriously ill pediatric patients have access to home- and community-based services, and even fewer receive them in a timely manner, AAP found.


Seriously ill children deserve the chance to optimize their quality of life, according to Kristen James, executive director of the Greater Illinois Pediatric Palliative Care Coalition (GIPPCC),

“Unfortunately, the number of children with complex and life-limiting illnesses is only going to grow,” James said at the Hospice News Palliative Care Conference in Chicago. “Kids are left in the hospital, with longer hospitalizations, more emergency room visits, and die suffering. We have the option to do it better. We often say you can’t change the prognosis, but you can change the way you care for children.”

Effecting such change is a difficult proposition.


Palliative care programs are difficult to sustain across the board, largely due to the lack of a robust reimbursement model. While value-based care models have provided some in-roads, to date, these have been oriented almost exclusively around the needs of seniors. 

The Affordable Care Act requires states to offer Medicaid coverage for concurrent hospice and curative care for pediatric patients, but those services still require a six-month terminal prognosis for eligibility.

Determining a six-month prognosis is challenging even for adult patients, particularly for those who have conditions with relatively unpredictable trajectories, like dementia.

These determinations are even more complicated when it comes to children. Health care providers and families often find it understandably difficult to acknowledge a child’s impending death, but the complexities don’t end there.

“Kids are amazingly resilient. You see them on the playground, right, but they may die 48 hours later. Also in the pediatric space, there are a lot of rare diseases,” James said. “We just don’t have the same science, data and numbers to really know what six months or less looks like.”

Even if the medical field were able to easily settle the six-month prognosis question, this excludes pediatric patients who are not expected to die within that time frame.

Though symmetries exist, palliative care and concurrent hospice care are not the same thing.

Some states such as California, Illinois and others have taken steps to make pediatric palliative care more available, but these programs are limited to the confines of those states. Each of these states also takes its own approach, so payment and care models are often inconsistent across geographic regions. 

Beyond payment and policy, caring for children requires a degree of specialization that many community-based hospice and palliative care providers do not have.

The needs and conditions of pediatric patients differ from adults in terms of diagnoses, illness trajectories, medication dosing and equipment, as well as family dynamics and support. Clinical training for providing hospice and palliative care is scarce across the board, but even more so when it comes to the specific needs of children.

“Adult hospice and palliative, and our pediatric program, are completely different approaches. It’s completely different staff, and it’s different training,” Sara Dado, senior director of clinical programs for Lightways Hospice and Serious Illness Care, said.“The worst mistake I think a hospice can make is to tell their adult team that they are now going to take care of kids. That’s a recipe for disaster.”

Sara Dado, senior director of clinical programs at Lightways, speaks at the Palliative Care Conference on April 28, 2022. | Aging Media Network photo

Despite these challenges, more community-based hospice and palliative care providers are making the necessary investments to build pediatric palliative programs, according to Dado.

But without sufficient reimbursement and expanded access to training and human resources, even best-intended and well-designed programs are difficult to scale.

To further change, providers can advocate for greater support for pediatric palliative care, including educating clinicians in other settings, as well as engaging with the public and with policymakers.

“Believe it or not, most of the legislators actually want to do the right thing. They just need to know not just what the problem is and what your solution is,” Dado said. “Even though we still have a long way to go, I think we’ve also come a long way in education and knowledge and understanding of what community-based care looks like. Palliative care was a foreign term in the the health care industry 15 years ago, and now it’s much more recognized.”

Companies featured in this article: