Similar to adults, many seriously ill children prefer to die in the home versus in facility-based care settings. But several barriers are preventing greater access to goal-concordant, community-based pediatric palliative care delivery.
The challenges in some ways mirror issues among adult populations such as insufficient clinical resources, caregiver burden or lagging family support in the home, as well as financial and logistical constraints. However, in the pediatric space, these obstacles are much more complex and nuanced to navigate, according to Allison Grady, pediatric oncology nurse practitioner and chair of the National Association of Pediatric Nurse Practitioners’ (NAPNAP) Pediatric Palliative Care Special Interest Group.
More community-based pediatric palliative care services would be extremely beneficial for serious and terminally ill children and adolescents, Grady stated. But families often struggle to receive care and caregiver support in the home.
“Familiar surroundings can be comforting for children and would allow for pets and siblings and others to visit,” Grady told Palliative Care News in an email. “For those who do have the ability to receive in-home caregiving, community-based workers should understand that children often receive ‘non-traditional’ hospice care.”
Exploring the possibilities
Pediatric palliative care patient populations often express a desire to remain in the home as their illness progresses.
Pediatric patients are able to concurrently receive palliative and hospice care alongside curative treatments. This means that palliative care plans for youth populations need to take into account the ongoing changes in treatments and goals of care – including home-based support, Grady stated. But providers often lack the ability to step deeper into community-based pediatric palliative care, she added.
Much of the serious illness care for youths is provided in facilities, according to Dr. Rebecca MacDonell-Yilmaz, medical director of pediatric supportive services at HopeHealth. More hospitals and health systems are looking into community-based expansion in an effort toward greater continuity of care, she stated.
The pandemic allowed pediatric palliative care providers to recognize the possibilities of moving more care into the home, MacDonell-Yilmaz said. Yet, persisting financial challenges are curbing community-based program growth, as finding sustainable reimbursement and staffing resources is difficult amid unpredictable and often small patient volumes.
“Coming out of COVID … we saw more teams form a larger community-base,” MacDonell-Yilmaz told Palliative Care News at the ELEVATE conference in Florida. “I think you need to go wherever there’s infrastructure to build off of, because you need to have the support. The [patient] numbers are so small, and that’s the other challenge is that you couldn’t just start a team [when] you just don’t have the numbers for it. The staffing model wouldn’t make sense to have full-time people.”
Receiving a chronic or serious illness diagnosis can throw a family into a “downward spiral” emotionally, financially and in their daily lives, according to Trish Murphy, pediatric palliative care nurse practitioner and a member of NAPNAP. For instance, many families must make the hard decision to pivot from a two- to one-income household as one parent or family member focuses on caring for the child, Murphy said. Typically, the parent with the most health care insurance coverage remains in the workplace to support the patient’s medical needs, but the benefits can be limited and leave families struggling to cover out-of-pocket costs, she added.
Family relationships can also become strained when a child becomes medically fragile, largely due to increased stress, complicated grief journeys, conflicting viewpoints on care and caregiving burden, among other difficult circumstances. Murphy said.
Having more community-based pediatric palliative care services available across the country could lead to better outcomes and greater relief for families, she stated. Ensuring safe and timely access to support takes significant consideration and building up strong community relationships.
“Everything falls on that caregiver who is doing the majority of the care for the child in the home,” Murphy told Palliative Care News. “It really is the concept that it takes a village and requires a lot of services. It’s making sure gas and electric companies have medical justification not to turn off utilities when a child needs a ventilation device, or communicating with local fire departments and paramedics that there is a complex, non-mobile child in the house. It’s really trying to reach out to communities about the types of kids and families in their areas and what can be done to help them stay home if that’s what a child and family wants. It’s how to best make it safe for them.”
Pediatric patients can see a variety of care specialists throughout the course of their illness, which can challenge care coordination in the home, Murphy said. But facility-based care only allows for a “small glimmer” of the child’s personality and goals of care compared to their temperament and comfortability in a home setting.
Providers would benefit from having greater understanding of a pediatric patient’s emotional, physical and psychosocial needs if more community-based palliative care resources were available specifically for youths, she added.
Expanded community-based services would dramatically improve equity, access and continuity of care, said Dr. Toluwalasé “Lasé” Ajayi, director of pediatric palliative care and interim chief of palliative medicine at Rady Children’s Hospital San Diego. Ajayi is also clinical professor at the University of California San Diego (UCSD) and program co-director of UCSD’s Scripps’ hospice and palliative care medicine fellowship program.
“[These services] would allow more children to receive comprehensive support aligned with their needs in the setting of their choice, reduce preventable hospitalizations and improve caregiver satisfaction,” Ajayi told Palliative Care News in an email. “Importantly, it would also allow earlier integration of palliative care — shifting away from an ‘end-of-life only’ model and toward a more holistic, upstream approach.”
Digging into the impacts
Though pediatric-specific cost data is sparse, a growing body of research has found home-based palliative care can reduce high-cost health care utilization in hospitals, emergency departments and intensive care units, Ajayi said.
Caregiver burden could also be mitigated by more proactive symptom management, increased psychosocial support and greater access to respite, according to Ajayi. But funding models for pediatric palliative care are uniquely complex, and significant reimbursement reform would be needed to fully realize the cost and caregiver benefits at scale.
Nearly half, or 49%, of youths across the United States were enrolled in either Medicaid or the Children’s Health Insurance Program (CHIP) as of October 2024, according to an analysis report of data from the U.S. Centers for Medicare & Medicaid Services (CMS) by the American Academy of Pediatrics (AAP). The District of Columbia, Louisiana, Kentucky and North Carolina saw the highest rates of children in these federally funded programs, at 70%, 63%, 59% and 57% of state-wide beneficiaries, respectively.
Health care costs for children are extremely high compared to adults, with more specialized care needs and more unpredictable disease trajectories, according to Grady. Families who rely on Medicaid and CHIP coverage are facing tremendous unknowns amid considerations of potential cuts to these programs.
The U.S. House of Representatives recently passed a bill proposing an estimated more than $700 billion in Medicaid cuts during the next decade. The legislation’s potential impacts on community-based hospice and palliative care delivery could be significant, according to industry stakeholders.
Medicaid clawbacks would greatly affect the ability to provide home-based pediatric palliative care, Grady indicated. The cuts would worsen reimbursement and access issues and put providers in at a deficit in the home setting. Parents need access to professionals who can help with symptom and medication management and provide anticipatory grief guidance. Caregiver burnout rates can be particularly high in the pediatric space, as are respite needs and support for other family members and siblings, Grady said.
“It’s really tough and there isn’t a lot of palliative-only coverage for kids, even in [populated] areas,” Murphy said. “Many of us struggle to get kids home because there’s no medical support to come to the home. It takes a lot of manpower and the hard part from the insurance standpoint. There aren’t a lot of palliative care hours approved for home support. It’s getting down to the nitty gritty details and seeing that we’re in a really bad climate for talking about the need for more money and funding support to care for a child in the home.”
Building and sustaining a community-based pediatric palliative care program requires several small but meaningful steps, according to MacDonell-Yilmaz. One way to start is by providing pediatric-specific training opportunities to palliative care professionals serving adult populations, she stated.
Starting slowly with a few clinicians, nurses and social workers interested in cross-training can pave the way for more career development opportunities that attract and retain pediatric-specific staff, MacDonell-Yilmaz said. Striking a clinical capacity balance is important to ensuring community-based access.
Casting a wide net among local referral sources is also key, MacDonell-Yilmaz indicated. Providers across the care continuum lack sufficient understanding about palliative care, let alone in the pediatric space where these conversations can be more difficult to broach, she stated.
“I find that I still do a lot of education with other referral sources and partners in the community to help them see that this is a really great option for children,” MacDonell-Yilmaz told Palliative Care News at the ELEVATE conference. “So, education of other clinicians of what concurrent care is and that it might be appropriate for their patients and doesn’t mean they’re right at the end of life. But here’s some support we could bring in earlier to really wrap our arms around this family and make this a better experience.”
