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.
Why Coverage Matters
For children nearing the end of life, access to hospice, palliative care, and ongoing treatment can depend on how coverage rules are applied. Families may therefore face difficult choices when support for comfort-focused care and disease-directed treatment is not coordinated. The effects of changing coverage policy are likely to vary by state, illness, and family circumstances.
The Limits of Concurrent Care
Pediatric concurrent care is intended to allow children to receive hospice services while continuing curative or disease-directed treatment. The approach is complicated because pediatric palliative care serves patients ranging from prenatal cases to young adults, unlike adult-focused models. Nationally, pediatric hospice is often delivered by staff with limited pediatric experience and training, and providers without concurrent-care experience may not implement it in line with family goals. The Children’s Concurrent Care Requirement is a positive step, but it does not expand available service types or cover supportive care for children whose prognosis falls outside the last six months of life.
From Reform to Pediatric Palliative Care
The Patient Protection and Affordable Care Act, commonly called the ACA or Obamacare, was signed into law in 2010. One review describes it as the most significant expansion and change in U.S. health insurance coverage since Medicare was created in 1965. The law included insurance regulations, exchanges, premium subsidies, cost-sharing reductions, and risk-management provisions. Separately, the American Academy of Pediatrics’ 2000 statement, “Palliative Care for Children,” helped raise awareness and spur pediatric palliative-care program development across the country.
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.
Research Priorities in Pediatric Home Care
Recent research describes pediatric home-based hospice and palliative care as clinically and systemically promising, while emphasizing that important barriers remain. A scoping review identifies disparities in access, questions about the best care models, and the need for novel payment models as priorities for further study. A 2024 review likewise reports barriers to the development, implementation, and dissemination of home-based services, along with gaps in knowledge about best clinical practices. Research on concurrent care notes that the ACA required state Medicaid programs to pay for both curative and hospice services for children and adolescents, although hospice eligibility can become difficult to recertify when disease-modifying treatment extends a child’s life beyond six months.
Access Remains Limited
Pediatric hospice remains a small part of the overall hospice system. Hospice News, citing the American Academy of Pediatrics, reports that children account for less than 1% of total hospice patients despite tens of thousands of annual deaths from life-limiting illnesses. The same report says pediatric hospice services are growing, according to the National Alliance for Care at Home. Critics nevertheless argue that concurrent care does not go far enough for seriously ill children, even though the ACA introduced broader changes such as healthcare exchanges, Medicaid expansion, and protections for people with preexisting conditions.
Matching Services to Children’s Needs
Guidance on pediatric concurrent hospice care emphasizes that eligibility and services should be assessed differently from a simple hospice-versus-treatment choice. A case-based discussion proposes guidelines for identifying children who may benefit from concurrent hospice care. It also distinguishes services a hospice should be expected to cover from services that may remain the responsibility of traditional insurance. This framework highlights the need to coordinate concurrent hospice with existing coverage rather than treating the two systems as interchangeable.
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.
A Fragile Coverage Framework
The available evidence suggests that pediatric end-of-life care depends on more than whether hospice technically exists. Coverage rules, provider experience, and the ability to combine comfort-focused services with ongoing treatment can all shape what families receive. Changes to insurance policy could therefore affect care unevenly, especially where pediatric expertise and supportive services are already limited.
Building Better Models
Future progress will likely depend on improving coordination between hospice, palliative care, and disease-directed treatment. Research and policy discussions may need to focus on service models that support children whose illnesses do not fit a six-month prognosis and on payment approaches that reduce gaps in access. The direction of these developments remains dependent on implementation decisions at the federal and state levels.
Implementation Across Systems
Experts continue to examine challenges in implementing legislation intended to expand pediatric palliative-care access. Current efforts include overcoming practical barriers and building momentum for improved care for seriously ill children across states. Guidance on concurrent hospice also focuses on identifying appropriate patients, implementing the model, and addressing challenges that commonly arise in practice. These concerns show that policy enactment alone does not guarantee consistent access or delivery.
Care Aligned With Family Goals
For families caring for a seriously ill child, end-of-life support must account for both the child’s medical needs and the family’s goals. A system that separates hospice from ongoing treatment may make it harder to obtain the combination of services a family considers appropriate. When pediatric expertise or supportive services are limited, families may experience greater uncertainty about how to navigate available care. The practical impact of coverage policy is therefore likely to be felt in day-to-day decisions about treatment, comfort, and support.
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.