End-of-Life Care for Children: How Repealing the Affordable Care Act Could Hurt Families
"The ACA made it easier for children with complex conditions to receive hospice care while continuing curative treatments. Changes to healthcare policy could reverse this progress."
For families facing the unimaginable reality of a child's terminal illness, hospice care offers invaluable support. Yet, far too often, children and adolescents don't receive these crucial services. A staggering three-quarters of pediatric deaths occur in hospitals, without the involvement of hospice, missing an opportunity for family-centered care and effective symptom management.
Many children who require end-of-life care have chronic, complex conditions, and are often enrolled in Medicaid due to their disability status, the severity of their illness, or their overall functional needs. Before the Affordable Care Act (ACA), these families faced a heartbreaking dilemma: choosing between potentially life-extending curative treatments and comfort-focused hospice care.
The ACA changed the landscape, enabling children to receive both curative and hospice services simultaneously. This article explores how the ACA improved access to hospice care for children and what the potential consequences could be if these provisions are rolled back.
The ACA's Impact: Concurrent Care and Expanded Access
Before the ACA, Medicaid often required families to forgo curative treatments in order to access hospice care. This was a nearly impossible choice, as these curative therapies often managed symptoms and maintained the child's quality of life. Recognizing this barrier, many states initiated policies to expand palliative and hospice care for children with life-limiting conditions.
- Concurrent Care Provision: The ACA's Section 2302 allowed children 21 and under enrolled in Medicaid or CHIP to receive both curative and hospice services. This eliminated the difficult choice families previously faced.
- Broader Access: By allowing concurrent care, the ACA made hospice a more viable option for families who wanted to maintain potentially life-sustaining or symptom-managing treatments.
- State Implementation: While the ACA mandated the concurrent care provision, states varied in how quickly they implemented it, with those facing budgetary constraints often lagging behind.
Threats to Progress: Potential Consequences of Repeal
The current political climate raises concerns about the future of pediatric hospice care. Proposals to repeal the ACA and cap federal Medicaid spending could have devastating consequences for families of children with complex, chronic conditions.
Capping Medicaid or transitioning to block grants could incentivize states to cut home- and community-based services, which are crucial for children receiving hospice care. Furthermore, repealing the ACA would eliminate the federal requirement for concurrent care, potentially leading states to revert to policies that force families to choose between curative treatment and hospice.
For children with the highest levels of medical complexity, the impact could be particularly severe. Changes to Medicaid could destabilize the already limited access to hospice care, leaving families with fewer options for compassionate, comprehensive end-of-life care.