Recent research has uncovered some of the leading barriers preventing greater pediatric palliative care utilization across underserved communities.
Seriously ill children of color are among the most underserved patient populations, with a recent analysis digging into the focal points of systematic racial issues tied to health disparities.
Children in racial and ethnic minority groups often receive poorer quality compared to white pediatric patients, according to the analysis, published in The Lancet Child & Adolescent Health journal. The research data spanned from Jan. 1, 2017, to July 31, 2022, and examined inequities among pediatric palliative populations.
“The identified studies indicate that children from minoritized racial and ethnic groups received poorer health care services relative to non-Hispanic white children, with most studies drawing on data from multiple sites, and accounting for indicators of family socioeconomic position and clinical characteristics,” the researchers stated in the analysis. “Policy changes within and beyond the health care system … are essential to address the root causes of treatment inequities and to promote equitable and excellent health for all children.”
Reimbursement, educational gaps
Other research has also highlighted the prevalence of health disparities among minority groups.
Hispanic and Latino pediatric patients were 59% less likely to receive palliative care consultations compared to white patients across inpatient settings nationwide, a June 2022 study published in Pediatric Critical Care Medicine found.
In addition to provider bias and historic, systemic racism issues in the United States, cost of care is among the potential barriers to receiving these consultations, the researchers indicated.
“Patients and families face numerous barriers to [pediatric palliative care (PPC)] including poverty, lack of access to health insurance, language barriers, discrimination and cultural differences,” researchers wrote in the study. “These barriers are further perpetuated by scarce and underfunded clinical initiatives and research that target the needs of Hispanic/Latinx families.”
The needle is slowly moving closer to improvement around pediatric palliative payment incentives that could make this care more affordable and accessible.
Some states have begun instilling regulations in place requiring private insurance companies to cover palliative and hospice care for eligible children. Illinois legislators in January 2021 passed the Pediatric Palliative Care Bill (SB2384), which established an in-home palliative care benefit for children facing life-limiting conditions.
Another bill was introduced in Illinois in 2022 that, if enacted, would require private insurance companies to cover pediatric palliative care. The legislature is currently awaiting Senate approval.
Access to palliative care can be especially important for minority families facing a terminal illness, according to Mary Kay Sheehan, CEO of Lightways Hospice and Serious Illness Care. The Illinois-based provider has a pediatric census of roughly 100 patients currently, she indicated.
“Palliative care can be easier to accept for families because hospice means their child is dying, so they often choose the palliative route,” Sheehan told Palliative Care News. “It’s just difficult to negotiate with insurance companies to get payments, even though they were supposed to make the benefit available in my state. In my experience, not all costs are covered by insurance, and it can be a learning curve to navigate the different billing departments of care. It’s a challenge, but you do eventually get reimbursed for most of the care.”
Uncovered pediatric palliative care costs can often become part of providers’ fundraising and philanthropic initiatives, Sheehan said. But families can also face high care costs when they lack access to serious illness care resources, often from greater emergency and urgent care utilization, she added.
The disparity issues are multifactorial, according to California-based George Mark Children’s House CEO Shekinah Eliassen.
Part of the access challenges involve a lack of pediatric palliative care programs nationwide, Eliassen said. Communities of color in rural and urban regions alike can face an insufficient availability of resources, she stated.
Some state legislators have increasingly recognized a need for change. Legislation surfaced in California last October that builds on existing laws requiring the state’s health department to develop a pediatric palliative benefit pilot program available to Medi-Cal beneficiaries 21 and younger. Medi-Cal is the state’s Medicaid program.
Another leading barrier is a lagging supply of professionals trained to provide pediatric palliative care, Eliassen said.
A few states have passed regulations requiring greater community education around pediatric palliative services, both at the public and health care provider levels.
Georgia in 2020 passed legislation that requires the state’s health department to provide palliative care consumer and professional information and education programs. The law stipulates that the Georgia Department of Community Health website include a definition of palliative care and patient eligibility information, including pediatric services. Additionally, the regulation requires the health department to include continuing education opportunities for health care providers in these services.
Similar regulations were unveiled during 2017 in Nebraska. The state passed legislation requiring the state’s health department to feature on its website informative pediatric palliative resources for patients, families and health care providers across the continuum, along with continuing education and referral resources.
“There isn’t a ton of palliative care training in the clinical medicine ecosystem,” Eliassen told Palliative Care News. “There’s more awareness growing of the importance, but in order to ensure that patients are cared for, we need to provide training in it. It’s giving those medical residents and nurses exposure to what pediatric palliative care is and ways to directly interact with kids and their families. That involves teaching the medical and psychosocial parts of patient care, including consideration around their cognizant and age levels.”