IN 2010, THE AFFORDABLE CARE ACT (ACA)—popularly known as Obamacare—expanded the types of care available to people under the age of 21 who are nearing the end of their lives. The ACA’s Concurrent Care for Children Provision requires Medicaid and the Children’s Health Insurance Program (CHIP) to cover both disease-directed therapies and hospice simultaneously.

Hospice provides integrated symptom management, as well as emotional and spiritual support focused on quality of life for dying patients. Previously, children with advanced cancer who were expected to live six months or less could receive hospice care but only if they ceased all curative treatment, a concession few families were willing to make. 

“Concurrent care allows for flexibility and honoring patients’ and family wishes,” says Khaliah Johnson, a pediatrician and the division chief of pediatric palliative care at Children’s Healthcare of Atlanta, who notes the option provides children and their families with more tailored wrap-around care, based on their complex needs and wishes. “We’re saying, you may be seeking treatment, and you are also deserving of comfort, quality of life, and as many full, joyous days as possible.”

Still, a letter published December 2022 in the Journal of Pain and Symptom Management reports that more than 40% of children’s hospitals in the U.S. do not have access to pediatric hospice, in part due to administrative barriers such as the lack of clear implementation guidelines at the federal and state levels.

“There are basically 50 variations because each state is in charge of its own Medicaid funding,” says Johnson, who was not involved in this research. “We need more unity, consistency and a better standard of access to this care.” This lack of guidance can result in claims denials for services for children with cancer who are seeking concurrent care—since hospice providers are typically reimbursed on a per-diem basis and other medical providers are reimbursed for each provided service. Further complicating the picture, private insurance plans aren’t subject to the Concurrent Care for Children Provision.

In November 2021, Johnson and co-authors shared case studies in Pediatrics that described advocacy efforts that have improved access to pediatric concurrent care in certain states. For example, because of the ongoing efforts of a coalition that has been working to promote pediatric palliative care services, lawmakers in Illinois passed legislation that went into effect on Jan. 1, 2023, that requires all private insurers and Medicaid plans in the state to reimburse for concurrent care for children.

Even as advocates try to clarify state policies and increase access, questions persist, says Ashley Kiefer Autrey, a pediatric palliative care physician at Children’s Hospital New Orleans and co-author of the letter in the Journal of Pain and Symptom Management. “When it comes to the confusion about the little pieces of what’s covered, that’s where we have to provide education and help coordinate with the [relevant] Medicaid office,” says Autrey. 

Through concurrent care, chemotherapy and radiation remain options. Additionally, reversible challenges like an infection can be addressed and services like inpatient hospitalization, as well as personal care, psychiatric services, and rehabilitation services, can be accessed in tandem with hospice services like home nurse visits and psychosocial support. As the end of life nears, however, Autrey still emphasizes quality of life to her patients and the possibility that some forms of treatment might be detrimental. “You have to empower parents to protect their children from things that could be harmful and, instead, intensively focus on comfort.”

Through concurrent care, families can make the choice. “Children with serious illness and complex medical needs deserve the best of care as it relates to disease-directed care and palliative care,” says Johnson. “Working as a team, we are better empowered to provide care that honors what each family and patient needs and values.”