In my last blog post, Initiating Comprehensive Pediatric Palliative Care Models, I discussed some of the barriers to achieving timely initiation of palliative and hospice care delivery for children. This post, I want to focus on one of those cited barriers, reimbursement for services, and introduce what this topic has to do with the recently upheld Patient Protection and Affordable Care Act.
Within the past decade, there has been increased clinical attention and empirical evidence focused on terminally ill children and their unique needs at the end of life. Hospice eligibility mirrored that of adults and required children to have a life expectancy of six months or less, and also discontinue all curative or life-prolonging medical therapies (e.g., chemotherapy, radiation, transplant rejection medication) upon enrolling in hospice care (Lindley, 2011).
The implications of forgoing curative care therapies present a difficult decision for the patient and family no matter what the age of the patient is. In the pediatric population in particular, the inability of having concurrent curative care and the overall benefits of hospice care presented a difficult conundrum, and many families decide to continue curative therapies and delay hospice entry (Lindley, 2011). This delay in seeking hospice benefits has many negative quality-of-care implications and sequelae.
Prior to the Affordable Care Act, a few states took it upon themselves to pass individual state legislation promoting waivers in hospice eligibility requirements for children, meaning that children with terminal conditions were eligible to receive both hospice and curative care benefits.
As a result of pioneering programs, the Institute of Medicine Report (2003), and a federal grant, there was growing momentum to change the Medicaid hospice regulations, in hopes that those eligibility and reimbursement changes would trickle to other private insurance (Dabbs et al., 2007). Florida, Massachusetts, and California were among the leaders in terms of early policy development as well as demonstration of cost-effectiveness of early enrollment into hospice care benefits for children (Lindley, 2011). While these states set great precedent, it was recognized that concurrent care waivers were a needed policy change on the federal level to improve access to hospice care for all terminally ill children in the United States.
Passed as one of the many provisions wrapped up in the Affordable Care Act is the concurrent care/hospice waiver, indicating that Medicaid will reimburse for services of terminally ill children enrolled in hospice who also seek to simultaneously receive curative therapies. Under this policy, hospice care became a mandated benefit under Medicare, Medicaid, and state CHIP enrollees (Lindley, 2003).
This section of the ACA marked a great achievement for gaining more access to pediatric hospice benefits, but there are many other aspects of the system that must be overcome for success, as reimbursement alone does not cover the cost of many programs. For my final blog post in the series, we will focus on successful implementation and provide a glimpse at what individual programs have done to sustain themselves.
With close to 1,000 pages of content, the Affordable Care act has a lot in it. It will be up to us to stay up to date about how it will impact our practice and our patients' treatment.
- Dabbs, D., Butterworth, L., & Hall, E. (2007). Tender Mercies: Increasing Access to Hospice Services for Children with Life-Threatening Condition. 32(5); 311-319.
- Lindley, LC (2011). Healthcare Reform and Concurrent Curative Care for Terminally Ill Children. Journal of Hospice & Palliative Nursing. 13(2); 81-88.