P0554 - Louisiana Pediatric Hospice Concurrent Care: Rewriting Culture and Language

The Gulf State Pediatric Palliative Care Consortium formed in January 2019, and our most important focus currently is to transform pediatric hospice care in LA. It came to our attention in March 2019 that the Medicaid manual for pediatric concurrent care hospice benefit language changed, which caused thoughtful dialogue in our hospice community. Concurrent Care Hospice Benefit for children was made available by our Affordable Care Act in 2010. Concurrent Care means that seriously ill children who are <21 years of age and have a 6-month prognosis are entitled to receiving a hospice benefit in addition to all necessary disease-directed therapies with the goal of providing access to comprehensive care to live as long and as well as possible. This benefit ensures that parents are never forced to make a decision to stop life-prolonging therapies in order to receive quality care at home from an interdisciplinary hospice team focused on comfort.

The implication for the current Medicaid language leads hospice agencies to worry that taking on concurrent care with seriously ill children potentially means they will be responsible for extraordinarily expensive reimbursement for care plan entities such as chemotherapies, seizure medications, hospitalizations, DME, and visits with subspecialists. They also worry they are at risk for audits in the future. In Louisiana, hospice per diem is roughly 150-190$/day per patient. If hospices were forced to reimburse all aspects of a concurrent care plan, it could bankrupt them quickly. Ultimately, the current language has the potential of causing concern for decreased utilization of hospice for seriously ill children in the state of Louisiana, which can cause alarm for increasing unnecessary suffering.

Louisiana Mississippi Hospice and Palliative Care Organization, which is where our consortium grew from, met with Governor Edwards’ office to discuss our concerns about the new Medicaid language. Governor Edwards’ office supported and encouraged us to rewrite the language. We worked with our consortium and went through 15 edit drafts. Our consortium broadly interdisciplinary with comprehensive representation throughout the state, including several premier pediatric hospice programs and hospitals. We also worked closely with national organizations (CAPC and NHPCO) in addition to many colleagues (Dr. Conrad Williams and Lisa Lindley) around the country to propose new, updated language.

Our new language was submitted in December of 2019. We have been working closely with our Medicaid office to roll out and implement the new language. However, once the pandemic occurred, like most things, our progress came to a pause.

We are hopeful to continue this work post-pandemic to ensure all children in Louisiana have access to quality hospice care and life-prolonging care to live as well as possible with serious illness.