Education, Care Coordination Essential to Expanding Pediatric Palliative Care

Pediatric patients are among the most underserved seriously ill population in hospice and palliative care. Hospices have worked to expand their scope of pediatric services, with a focus on increasing access to palliative care and opening up referral streams.

Compared to adults on hospice, children represent a smaller but crucial group of patients, according to Joe Rotella, M.D., chief medical officer of the American Academy of Hospice and Palliative Medicine (AAHPM).

“Children are a very important population that is underserved by palliative care,” Rotella told Hospice News. “Any palliative care providers that are treating just adults ought to be looking at the unmet needs of pediatric palliative care in their community and thinking about a way to provide that. Pediatric palliative care looks different than in adults but every bit as important, if not more so.”

The large bulk of hospice and palliative care patient populations are older adults. Nearly 63% of Medicare decedents who received hospice care in 2019 were 85 and older, according to a Medicare Payment Advisory Commission (MedPAC) report. This compared to less than a third (29.4%) under the age of 65.

But the incidence of serious and chronic illness is not limited to seniors.

Each year an estimated 500,000 children present with a serious illness in the United States, with many becoming hospice-eligible within a year, according to 2018 research published in the Journal of Pain and Symptom Management. These patients account for roughly 45,000 deaths nationwide annually, a 2019 study found.

Underutilization of pediatric hospice and palliative care occurs for myriad reasons, including the reality that the needs of terminally ill children are distinct from those of adults. Providers need specialist knowledge regarding medication dosing, specialized equipment and assistance with family dynamics and support.

“Pediatric palliative care is highly complicated and complex,” said Harold Siden, M.D., medical director at Canada-based Vancouver Canuck Place Children’s Hospice. “One issue is the nature of the conditions. There is often a long period of chronic care involved with children.”

As is often true for palliative care in general, families of seriously ill children are frequently unaware of the nature of those services. Many among the public — and some clinicians — conflate those services with hospice, and families often fear losing their other health care options. Few understand that laws and payers generally allow children to receive concurrent curative care.

The availability of concurrent care presents both challenges and opportunities for providers. On one hand, it enables them to bring more pediatric patients under their wings. On the other hand, it can complicate back office processes like billing. 

Ensuring regulatory compliance when providing concurrent care can also become complex, requiring consistent and effective communication with state agencies and care coordination with the patient’s other health care providers. The large majority of those providers are primary care or or subspecialty clinicians, according to American Academy of Pediatrics (AAP) research. 

Seriously ill pediatric patients are a relatively small population, but tend to generate a somewhat disproportionate amount of health care costs.

These patients represent less than 10% of the U.S. population but account for at least 50% of hospital resources for youth patients, according to AAP research. Palliative care’s track record on reducing hospitalizations is an important component of its value proposition when it comes to reducing the spend.

But that care does not exist in a vacuum. Developing and expanding pediatric palliative care programs depends on the quality of referral relationships with these and other clinicians, Siden told Hospice News.

“Pediatric palliative care fills a small part of the overall referral pie,” said Siden. “Working alongside this treatment orientation in partnership is a key element of pediatric palliative care, rather than seeing it as an either/or proposition.”

Because this level of coordination is essential, palliative care teams are constantly focused on facilitating and maintaining relationships with referring clinicians, according to Raya Elfadel Kheirbek, M.D., professor of medicine and chief of gerontology, geriatrics and palliative medicine at the University of Maryland School of Medicine. 

“Consistently receiving appropriate referrals stimulates growth and keeps [these] programs thriving,” Kheirbek told Hospice News over an email. “Though the dynamics may vary from institution to institution, palliative care specialists share common obstacles when it comes to building these essential relationships. Most often, it begins with effectively showing how palliative care can support the efforts of clinicians as all parties work together to give seriously ill patients the best care possible.”