The Tangled Web of Pediatric Palliative Care and Policy

A complex set of federal regulations and payment systems can challenge access to care for seriously ill children and their families.

The nation’s fragmented health care system lacks clear guidance when it comes to navigating chronic, complex conditions in children, youth and adults, according to Jonathan Cottor, CEO and founder of the Center for Community Pediatric Palliative Care Homes.

Many of the state’s current health care laws and reimbursement guidelines are focused on the older patient population, which represents a major barrier to improved quality and support in pediatrics, Cottor said.

“Among the main differences is that these children fall under the Medicaid system, and that’s like trying to fit a square peg into a round hole,” Cottor told Palliative Care News. “Our health care system in the United States is really designed to care for the elderly. Children shouldn’t die young, but they do, and paying for their services requires understanding the different laws that different. There is no agreement.”

Challenging reimbursement structures

Pricing issues are the most common challenges faced when creating childcare services, according to Cottor. Medicaid programs vary greatly across state reimbursement and regulatory systems for child care delivery, she added.

He and his wife Holly Cottor are co-founders of Ryan House in Phoenix, Arizona. Operated in partnership with Hospice of the Valley, the inpatient center offers childcare, hospice care, grief support and respite services. Founded almost 15 years ago, the site was inspired by the challenges the Cottors faced in caring for their son who was very ill, who died at the age of 17.

A major challenge is that most of the reimbursement available is for hospital services, with few options for community or home child care, Cottor said. Current payment structures do not adequately support the full field of interdisciplinary care. Among the biggest needs of families is access to child health care providers as soon as possible, as well as care coordination and support for caregivers, she said.

Having common definitions of these services and clear quality measures would go a long way toward improving access, he said.

“There should be a chapter in the federal law that really defines child care services and licensing. [requirements] instead of playing games at the state level,” Cottor said. “That clarity gives us the opportunity to provide services that should be provided to all families. It’s the laws and reimbursement systems that don’t allow us to do this easily. If we destroy the state of the government, all 50 states they would have a clearer direction, and we would see an explosion of these services.”

Child care workers can focus on building relationships with state Medicaid departments and lobbying lawmakers for higher rates, Cottor continued. This often involves “getting into the weeds” of government approvals and regulations, he said.

Management questions

Late reimbursements and complex regulations have made it difficult to maintain community-based child care programs, said Dr. Tom McNally, medical director of George Mark Children’s House. The California-based non-profit organization operates a daycare center in the San Leandro area near San Francisco and provides hospice, palliative, respite and bereavement care.

“Our first question is usually about [a patient’s] location and what rules are in place to determine what a child may qualify for. It’s complex, unmanageable and requires a lot of care coordination and resources to care for sick children,” McNally told Palliative Care News. “Children’s programs in general are not real ‘money makers’ because they are labor intensive and resource intensive. The real limit is not having enough programs. We have to put more resources into this to cover the areas where resources are lacking. ”

The community has a limited supply of these providers, which has implications for families who often travel long distances to get the care they need, she said. McNally is also the medical director of pediatric hospice at the University of California San Francisco (UCSF) and co-medical director of By Bay Health’s children’s hospice program.

Inadequate resources can complicate outcomes and exacerbate the financial and operational burden on patients and their families, McNally said.

Having standards established by the government on child care will help providers to operate stronger programs that better support their communities, he added. Common eligibility requirements and quality measures are very much needed, but they need careful consideration among policymakers so they don’t place unintended restrictions on care, McNally said.

“It would be easier and more straightforward if we had national standards based on standards for children receiving home care,” McNally said. “These need to be developed in the sense that they can’t just pull them out of thin air, but recognize pain relief as an important part of pediatric care and put resources and financial incentives into it.”