Researchers Build Framework for Pediatric Palliative Care Growth

Researchers have found common threads in efforts to develop sustainable pediatric palliative care for underserved patients and families in need worldwide.

Though demand is growing for pediatric palliative care, availability of these services is scarce at global levels, with staffing shortages and reimbursement issues as large culprits.

Children are among the most underserved seriously ill populations in hospice and palliative care throughout the world. An estimated 90% of children worldwide in need of palliative care services never receive them, according to a 2022 study from the Imperial College London’s Institute of Global Health Innovation (IGHI).


Global demand for pediatric palliative care outstrips the workforce and reimbursement resources to support it, according to Laura Dale-Harris, co-author of the IGHI study, and founder and director of the London-based Global Treehouse Foundation.

“The needs of these children and their families are changing,” Dale-Harris told Hospice News. “About one in eight children globally are living with some sort of life-limiting conditions and need a specialist to support them. Children with medically complex conditions and multiple health needs can be difficult to manage. Different health systems often fail to serve these families because they don’t have the right resources or because it’s very difficult to manage care.”

Globally about 65% of countries do not have children’s palliative care services in place, according to the IGHI report. For countries with these services, they are often “poorly funded and thinly spread, with major gaps in access compared to many other health services,” said researchers.


Accessibility, availability, and adequate and appropriate care each add a different component to the utilization issue, according to Jonty Roland, lead author of the study and honorary research fellow at IGHI.

The lack of a robust payment structure is perhaps the most significant concern, curtailing access to pediatric palliative care. This also stretches providers’ ability to offer affordable care, according to Roland. Many countries lack universal health care plans that cover the full scope of these interdisciplinary services, he said.

“Payers historically are not paying for children’s palliative,” Roland told Hospice News. “It’s not an area that insurers have historically seen as their ‘core benefit package,’ and so providers don’t have the ability to expand access at a loss to children palliative care services.”

At a national level, current pediatric palliative care (PPC) delivery models in the United States are ineffective and unsustainable to support the needs of patients and families, according to a recent study from The American Academy of Pediatrics (AAP).

No consistent or uniform federal or state approach to PPC payment exists in the United States, which “significantly limits provision and access,” said AAP researchers.

Some initiatives at state and local levels are moving forward to build up reimbursement structures for pediatric palliative care.

The Illinois General Assembly earlier this year passed a bill that requires private insurers and Medicaid plans in the state to include a community-based pediatric palliative and hospice benefit. Additionally, Massachusetts legislators ramped up funding for these services by allocating more than $8.7 million of the state’s fiscal year budget to support expansion of pediatric palliative care providers.

Though efforts are percolating in other states, these fall short of what’s needed at a national level.

One in five children’s hospitals across the country lack these services, researchers found. Developing more pipelines to palliative and hospice care is a critical need, said AAP researchers.

“Development of new PPC programs is an urgent priority to provide optimal care to children with serious illness and their families,” said AAP researchers. “Effective and sustainable PPC care delivery models, inclusive of hospice (which 50% currently lack) and respite services (which 80% currently lack) are integral to achieving equity and justice for vulnerable patient populations. The gold standard of PPC, hospice, and respite access as a universal standard of care remains unrealized for too many children and families in the United States.”

Increased pediatric palliative care utilization can positively impact the patient outcomes, as well as communication, costs, and service coordination, according to AAP researchers. A lack of these services in facility-based settings such as children’s hospitals may perpetuate inequities in care, they added.

In terms of barriers to access, providers often lack the clinical staffing resources to span coverage of smaller pediatric patient populations across large geographic regions, said Roland.

Determining the appropriate time to discuss eligibility, and levels of care and goals of care can also represent a barrier. Communication gaps proliferate among pediatric professionals as to when to broach the conversation of palliative care with patients and their families, Roland added.

Having a benchmark overview of both the presence and absence of pediatric palliative programs and correlating factors could “empower future PPC program development and growth,” and aid in improving future access, AAP researchers concluded.

IGHI researchers developed a framework for bridging barriers to pediatric palliative care program development and access. Researchers polled providers across 27 different countries to create a “blueprint” in which providers can grow, innovate and improve these services based on best practices from others around the world who are finding sustainable strategies.

“We needed to see what sort of commonalities were key in the global community of pediatric palliative care to go further on developing a framework for new providers in places that needed these services,” said Dale-Harris.

The framework includes nine core components to developing sustainable paths to pediatric palliative care.

Developing a team of interdisciplinary specialists of varying expertises and roles was one crucial area to shoring up the workforce, with ongoing education and training efforts a key, as well as offering staff mental health and benefit packages to stave off burnout and turnover.

The Palliative Care and Hospice Education Act (PCHETA) holds a could bring some relief in the United States towards improving shortage issues. The legislation has been in motion for the past five years and was reintroduced in Congress earlier this year.

If enacted, PCHETA would authorize $100 million over the course of five years to support programs designed to bolster clinical education in hospice and palliative care, along with related interdisciplinary professions such as chaplaincy, pharmacy and social work.

Establishing partnerships with payers, fellow providers and other community organizations was another key component. Leveraging a network of these partnerships can provide “substantial external resources” needed to “expand and improve service” in the long run, IGHI researchers concluded.

Other core elements of pediatric palliative care programming include featuring inclusive and comprehensive services that encourage access across a wide range of diverse patients and families in need, IGHI researchers found. Services should focus on continuity of care and enhanced options and choices not only for the patient but family as well, such as respite support and home care offerings, said researchers.

Technology has also become integral to sustainable PPC services. Developing digital tools to deliver services, and offer education and support to children and families is integral, said researchers.
On this, providers have a head start in some regards, due to the pandemic telehealth boom and a surge in the digital health industry. But that momentum could halt in its tracks if those temporary flexibilities will remain intact after the public health emergency expires.

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