Mapping America's Hidden Palliative Care Deserts to Drive Policy Reform

NEW YORK, NY – October 14, 2026 — The modern consumer experience is often defined by convenience, digital integration, and seamless service delivery. Yet, when Americans face the most complex and vulnerable phases of their lives—navigating serious, life-limiting illnesses—the healthcare infrastructure frequently fails to provide predictable, specialized support. Today, the Center to Advance Palliative Care (CAPC), affiliated with the Icahn School of Medicine at Mount Sinai, launched the Palliative Care Program Inventory. This national initiative is designed to finally map where specialty palliative care exists across the United States, and more importantly, where glaring geographical and institutional voids remain.

Currently, the U.S. lacks a centralized, standardized record tracking the availability of palliative care across clinical settings. We possess more granular data on retail foot traffic than we do on where a family can access complex symptom management and care planning. The new inventory will collect operational data for the 2025 calendar year directly from specialty providers, establishing the first comprehensive national baseline to support research, policy, and advocacy.

"People living with a serious illness should be able to access palliative care when and where they need it. But first, we need to understand where that care is available and where it isn’t," said Brynn Bowman, MPA, CEO of the Center to Advance Palliative Care. "The Palliative Care Program Inventory will give the field a clearer picture of the nation’s palliative care infrastructure and help us identify the communities and care settings where more work is needed."

Mapping the Invisible Care Deserts

For decades, the growth of palliative care has been a hospital-centric phenomenon. By 2020, 83 percent of hospitals with 50 or more beds had palliative care programs, a massive leap from just 25 percent in 2000. However, this inpatient success story masks a deeply fragmented reality outside hospital walls.

Rural and socioeconomically disadvantaged areas face profound shortages. Recent health policy research indicates that more than 90 percent of board-certified palliative physicians and nurse practitioners are concentrated in metropolitan and urban centers. Only 10 percent practice in areas with the lowest socioeconomic levels. Furthermore, older adults in rural communities are significantly less likely to receive intensive hospice and palliative services compared to their urban counterparts.

Disparities in access are also widely documented among socially and economically disadvantaged groups, including Black, Hispanic, and Native American populations. These gaps are driven by a lack of adequate health insurance, reduced access to specialty care, and systemic barriers in patient-physician communication. While tools like the Dartmouth Atlas of Health Care have extensively documented regional variations in end-of-life care, they do not provide a detailed view of community-level palliative services. By pinpointing exactly where programs operate, the CAPC inventory aims to expose these invisible care deserts, providing the empirical evidence necessary to direct resources where they are needed most.

Beyond the Hospital Walls: A Shift to the Community

Palliative care is fundamentally different from hospice; it is an added layer of specialized medical support focused on symptom relief and quality of life, provided alongside curative treatment at any stage of a serious illness. As healthcare shifts toward outpatient models, the demand for community-based palliative care—delivered in clinics, nursing homes, and patients' private residences—has skyrocketed.

Yet, transitioning these services outside the hospital is fraught with operational hurdles, primarily driven by severe workforce constraints. The pipeline of specially trained clinicians is simply insufficient to meet growing demand. Medical workforce studies have warned of an impending "workforce valley," noting that without major health policy interventions, the number of board-certified hospice and palliative medicine physicians will continue to decline, potentially not recovering to current levels until 2045. As of recent estimates, there is roughly one palliative care physician for every 8,740 people aged 65 and older.

Burnout further exacerbates this crisis, affecting an estimated one-third of palliative care clinicians. Educational pathways remain bottlenecked; fellowship training programs were largely excluded from federal funding increases after Medicare caps were instituted in the late 1990s. By capturing metrics on staffing levels, patient volumes, and care delivery models, the Palliative Care Program Inventory will quantify the exact operational strain on these community programs, illustrating how workforce shortages directly impact patient access.

The Data Blueprint for Reimbursement Reform

The most formidable barrier to expanding palliative care is the current reimbursement landscape. Traditional Medicare fee-for-service models are notoriously misaligned with the realities of serious illness care. They typically cover only 20 to 60 percent of a palliative care program's operating expenses, incentivizing a high volume of quick procedures rather than the time-intensive, interdisciplinary team approach that defines quality palliative medicine.

Without a dedicated Medicare palliative care benefit—similar to the established hospice benefit—providers are forced to cobble together funding through piecemeal medical codes that fail to capture the true value of their services. This financial volatility discourages the establishment of new non-hospice community palliative care programs.

However, the healthcare industry's broader shift toward value-based payment models offers a glimmer of hope. These models, increasingly utilized by Medicare Advantage and Accountable Care Organizations, link payment to quality outcomes, patient satisfaction, and crisis avoidance—metrics where palliative care excels. The aggregate data collected by the CAPC inventory will serve as a foundational blueprint for policymakers and health economists. By demonstrating exactly how and where high-quality palliative care is delivered, the data could catalyze federal and state payment reform, pushing entities like the Centers for Medicare & Medicaid Services toward dedicated serious illness benefit packages and alternative reimbursement structures.

Navigating Data Privacy and Voluntary Survey Limits

Building a national database from the ground up requires navigating significant methodological challenges. Because the Palliative Care Program Inventory relies on voluntary self-reporting, it inherently faces the risk of selection bias. Well-resourced, mature programs affiliated with major health systems may be more likely to participate, while smaller, underfunded clinics in underserved areas might lack the administrative bandwidth to submit their data. This dynamic could inadvertently skew the national baseline, overrepresenting institutional success while undercounting the struggles of rural providers.

To mitigate these risks and encourage broad participation, CAPC has structured the inventory to strictly collect operational data, explicitly avoiding individual patient-level data or protected health information. This crucial decision eliminates the steep privacy and compliance barriers that typically hinder healthcare data collection. Furthermore, participation is completely free and open to all U.S. specialty palliative care programs.

As an added incentive, participating programs can opt to be included in CAPC’s public Palliative Care Provider Directory, a widely used resource that helps patients, families, and referring clinicians locate services in their communities. While survey methodology experts acknowledge the inherent limitations of voluntary reporting, they also note that establishing an imperfect baseline is a vital first step in a field currently operating in the dark.

The Palliative Care Program Inventory, backed by the McElhattan Foundation and The John A. Hartford Foundation, represents a critical maturation point for American healthcare. As the population ages and chronic illness becomes the defining medical challenge of our era, understanding the operational realities of palliative care is no longer just an academic exercise. It is a commercial and cultural imperative. By mapping the infrastructure of serious illness care, we are finally taking the necessary steps to ensure that relief from suffering is dictated by clinical need, not geographic luck.