How Trump Policies Changed Medicare and Medicaid for End-of-Life Care

Trump Administration’s Lasting Impact on Medicare and Medicaid Funding for End-of-Life Care

Written by Genera Legacy Design (generanow.com)

Truth Matrix Score

Category	Score (1–10)	Justification
Primary Evidence Quality	9	Cites original policy documents, CMS reports, and verifiable data.
Source Credibility	9	Uses reputable sources including KFF, MedPAC, and NHPCO.
Source Ownership	8	Authorship appears neutral and independent with no corporate agenda.
Verification Feasibility	10	All claims are supported by public or official government data.
Topic Status	8	Topic is timely and continues to evolve in national policy debate.
Average Score (out of 10)		8.8

 

This article is rated 8.8 out of 10 on the Tru Matrix Truth Scale. Genera Legacy Design wrote a very solid, trustworthy article that will help anyone understand the status of Medicare and Medicaid and how possible changes will impact end of life care.

 

Beginning of article starts here:

 

Introduction:
End-of-life care in the United States – spanning skilled nursing facilities, assisted living, home health, and hospice services – relies heavily on Medicare and Medicaid financing. This report examines how federal policies during the Trump administration (2017–2021) affected funding for these services, what broad shifts in Medicare and Medicaid financing mean for end-of-life care, how the Biden administration has since responded or altered course, and what the future may hold (including the possibility of a return to Trump-era approaches). It also provides a breakdown of impacts by care setting and highlights notable state-level variations. The goal is to inform individuals planning for end-of-life care and providers who depend on these programs, by clearly outlining policy changes, funding trends, and their implications.

 

Trump-Era National Policy Changes Affecting End-of-Life Services (2017–2021)

 

During 2017–2021, the Trump administration pursued several policy changes that reverberated through Medicare and Medicaid, with direct and indirect effects on end-of-life care services:

 

·       Medicare Payment Reforms: The Centers for Medicare & Medicaid Services (CMS) implemented new payment models aimed at “value-based” care, which altered how providers are reimbursed:

o   Skilled Nursing Facilities (SNFs) – PDPM: In October 2019, CMS replaced the SNF payment system with the Patient-Driven Payment Model (PDPM), shifting focus from therapy minutes to patient characteristics cms.gov. While intended to align payments with patient needs, PDPM financially incentivized less therapy: CMS’s own analysis showed Medicare would pay more for residents receiving no therapy and less for those getting intensive therapy medicareadvocacy.org. Even before PDPM took effect, SNFs began cutting therapy staff and reducing therapy hours for residents medicareadvocacy.org. This raised concerns that nursing home residents (often in the last years of life) might receive diminished rehabilitative care under PDPM. On the other hand, PDPM increased payments for patients with complex nursing needs, potentially benefiting those with serious illnesses.

o   Home Health – PDGM: In January 2020, Medicare home health moved to the Patient-Driven Groupings Model (PDGM). PDGM shortened the payment episode from 60 to 30 days and eliminated bonuses for high therapy visit counts. Under PDGM, agencies get higher reimbursement for post-hospital patients and lower for patients admitted from the community, and therapy visit volume no longer boosts payment medicareadvocacy.org. Consequently, many home health agencies anticipated providing less therapy to patients medicareadvocacy.org. Advocates warned this could hinder access for seniors with chronic or longer-term care needs (often those aging in place or in end-of-life stages) who start care at home without a recent hospitalization medicareadvocacy.org.

o   Hospice Care – Medicare Advantage Carve-In: Traditionally, the Medicare hospice benefit is covered under fee-for-service Medicare. In 2019, the Trump administration’s CMS Innovation Center announced a Hospice Benefit Component within the Value-Based Insurance Design model, effectively allowing Medicare Advantage (MA) plans to “carve in” hospice benefits starting in 2021. This demonstration began in January 2021, meaning some MA plans took responsibility for hospice care, negotiating rates and networks. While participation was voluntary and limited, it signaled a shift toward managed care involvement in hospice, with potential future impacts on how hospice providers are paid and integrated into insurance networks. (The carve-in has continued as a pilot under the Biden administration.)

o   Medicare Advantage and Supplemental Benefits: The Trump administration promoted Medicare Advantage plans and expanded their flexibility. Starting in 2019, CMS allowed MA plans to offer new supplemental benefits for chronically ill enrollees, including services not covered by traditional Medicare (e.g. non-medical home care supports, adult day care, home safety modifications) commonwealthfund.org. This policy (enabled by the Bipartisan Budget Act of 2018) meant some seniors could get help with in-home support or caregiving through MA plans. Such benefits can indirectly improve end-of-life care by helping seniors maintain independence and delay institutionalization. At the same time, the administration’s emphasis on MA sometimes drew funding away from traditional Medicare – for example, an executive order in 2019 aimed to “expand Medicare Advantage” enrollment and choices medicareadvocacy.org.

 

·       Medicaid Waivers and Coverage Restrictions: The Trump administration used Medicaid Section 1115 waivers to reshape Medicaid in ways that could affect low-income older adults and long-term care services:

o   Work Requirements: CMS approved work requirement waivers in 13 states, making Medicaid eligibility conditional on meeting work or reporting criteria kff.org. These primarily targeted non-disabled adults under 65, but in practice they caused coverage losses. In Arkansas – the first state to implement Medicaid work requirements (2018) – over 18,000 people lost coverage in just a few months kff.org. Many were low-income adults in their 50s and early 60s who did not yet qualify for Medicare. The coverage losses raised alarms that seniors nearing retirement or caregivers might become uninsured, delaying needed care. (Court rulings halted most work requirements by 2019, and the Biden administration formally rescinded them in 2021 kff.org.)

o   Block Grant/Cap Initiatives: The Trump CMS also invited states to accept capped funding via the “Healthy Adult Opportunity” waiver initiative – a form of Medicaid block grant for certain populations kff.org. No state fully adopted this by 2021, though a modified block grant waiver in Tennessee was approved in January 2021 ccf.georgetown.edu, 80m.beehiiv.com. Block grants appealed to some as a way to give states flexibility, but they pose a risk of funding cuts over time since federal dollars would no longer automatically rise with need. End-of-life service providers feared that under capped funding, states facing budget pressure might restrict optional benefits like home and community-based services (HCBS) or lower nursing home payments. (The Tennessee plan, for instance, would have allowed the state to keep savings for underspending but also limit growth; the Biden administration later moved to unwind key elements of this waiver healthinsurance.org.)

o   Reduced Expansion & Eligibility: Trump and allies in Congress unsuccessfully sought to repeal the Affordable Care Act (ACA) in 2017, which would have rolled back Medicaid expansion that covered millions of low-income adults (including many with chronic illness). Even without full repeal, the administration signaled that states could impose stricter eligibility rules. For example, some approved waivers allowed premiums and lock-out periods for nonpayment kff.org. These measures didn’t directly target the elderly or disabled (who were generally exempt), but they underscore a policy direction of constraining Medicaid enrollment and spending, potentially affecting coverage continuity as people age into needing long-term care.

·       Regulatory Relief for Providers: The Trump-era Department of Health and Human Services (HHS) eased certain regulations on providers, ostensibly to reduce burden, which had mixed implications for care quality:

o   Nursing Home Oversight: Some Obama-era nursing home regulations were rolled back or delayed. Enforcement of new health and safety standards was softened – for instance, the administration reduced the use of per-day fines for nursing home deficiencies, opting for one-time fines in many cases. It also reversed a ban on pre-dispute arbitration agreements in nursing homes, allowing facilities to require residents to arbitrate disputes (a cost-related policy that can impact resident rights). These changes arguably lowered costs for nursing facility operators, but critics warned they weakened accountability for quality of care at the end of life.

o   Hospice Surveys: In response to reports of poor hospice performance, Congress (in 2020) mandated more frequent hospice inspections and a “Special Focus Program” for underperforming hospices. The Trump Administration’s CMS finalized these requirements near the end of 2020. However, implementation was slow; by 2021–2022, the hospice Special Focus Program was delayed (and as of late 2023, CMS had suspended rolling it out) – raising concerns that problem hospices might avoid scrutiny, at least temporarily hospicenews.com.

o   COVID-19 Emergency Actions: In 2020, the Trump administration responded to the COVID-19 pandemic with funding and regulatory waivers that heavily affected end-of-life care settings. The Families First Coronavirus Response Act (2020) boosted federal Medicaid matching funds by 6.2%, shoring up state Medicaid budgets during the crisis. The CARES Act and other relief bills provided billions in emergency aid to healthcare providers, including nursing homes, home health agencies, and hospices, to offset COVID-related costs and revenue losses. For example, nursing homes received infection control grants and a share of Provider Relief Funds, which actually improved nursing home operating margins in 2020 despite the heavy strain of the pandemic leadingage.org. While these were emergency measures (not typical policy changes), they had immediate impact: by keeping many struggling facilities solvent, the funds indirectly protected access to end-of-life care during the crisis. (The continuous Medicaid coverage requirement during the public health emergency also meant no Medicaid enrollee could be dropped in 2020 – increasing coverage stability for vulnerable populations.)

 

In sum, Trump-era policies sought to reshape Medicare payments (rewarding efficiency but raising fears of service cutbacks in SNFs and home health) and to contain Medicaid spending (via waivers introducing work rules and funding caps). Some initiatives (like Medicare Advantage benefit expansions and COVID relief funding) enhanced supports for end-of-life care, while others (like therapy payment changes and Medicaid eligibility restrictions) risked reducing care access or intensity. The net effect was a complex mix of cost containment and deregulation, the consequences of which are still unfolding.

 

Broader Medicare & Medicaid Funding Shifts and End-of-Life Care Implications

 

Beyond specific policies, the 2017–2021 period saw broader shifts in how Medicare and Medicaid finances flowed – trends that carry significant implications for end-of-life services:

 

·      Medicare Spending and Enrollment Trends: The Medicare program continued to grow as baby boomers aged in. Total Medicare spending rose each year, driven in part by increased enrollment and service use. Notably, Medicare Advantage (MA) enrollment surged, growing from about 33% of Medicare beneficiaries in 2017 to over 40% by 2021. This shift matters because MA plans often manage post-acute and end-of-life services differently than traditional Medicare. For example, SNFs report that Medicare Advantage pays significantly lower rates (around 27% less) than fee-for-service Medicare for rehab stays leadingage.org, and MA plans tend to authorize shorter lengths of stay. Thus, as more seniors enroll in MA, skilled nursing facilities have seen tighter margins on those patients and sometimes more stringent utilization management (e.g. MA plans might push for earlier discharge to home health or hospice). Hospice care under MA was previously untouched (since enrollees had to switch to fee-for-service Medicare to use the hospice benefit), but the 2021 hospice carve-in demonstration began integrating hospice into MA for the first time. These trends signal a gradual move toward managed care in Medicare, potentially yielding more coordination but also new challenges for providers reliant on fee-for-service reimbursement.

·      Rebalancing Long-Term Services and Supports (LTSS): Medicaid, which finances most of the long-term care for the elderly and disabled, has been undergoing a “rebalancing” from institutional care (nursing homes) to home- and community-based services. By 2019, over half of Medicaid LTSS spending nationwide was for home and community-based care rather than nursing facilities, reflecting beneficiary preferences to receive care at home. However, this shift depends on robust Medicaid funding for services like personal care, adult day care, and assisted living waivers. Under the Trump administration, there were no major increases in federal Medicaid LTSS funding. Programs like Money Follows the Person (which helps nursing home residents transition home) saw short-term renewals but uncertain footing. States often had waiting lists for HCBS waivers due to budget limits. In other words, demand to age in place was growing, but Medicaid resources remained constrained, leaving many families to rely on unpaid caregiving or pay out-of-pocket if they couldn’t get a waiver slot. This status quo-maintained pressure on skilled nursing facilities, since without expanded HCBS, frail seniors often eventually need nursing home placement covered by Medicaid.

·      Medicare Payment Updates and Sequestration: Annual payment rate updates for hospice, SNFs, and home health were generally modest during 2017–2020 (around 1–2% most years) in line with low inflation. Providers also contended with the ongoing Medicare sequestration – an automatic 2% cut to all Medicare payments in effect since 2013. (Sequestration was temporarily paused in 2020–2021 due to COVID legislation, providing brief financial relief leadingage.org.) Overall, Medicare’s reimbursement rates barely kept up with cost growth, especially for hospices and home health agencies. Hospices, for example, saw only slight payment increases, even as patient volumes rose; Medicare hospice spending grew from about $20.9 billion in 2019 to $23.1 billion in 2021 nhpco.org, nhpco.org, mostly due to more beneficiaries utilizing the benefit. For nursing homes, Medicare is a smaller piece of the pie (Medicare accounts for ~10% of patient days and ~17% of revenues on average leadingage.org, with Medicaid covering long-term stays), but Medicare shortfalls or cuts can still hurt because facilities often use Medicare margins to offset Medicaid losses. These funding dynamics meant that any threat to Medicare post-acute payments – such as proposals floated in Trump budget plans to reduce payments or introduce new beneficiary copays for home health – caused alarm in the provider community. While most of those cuts were not enacted by Congress, the climate of fiscal restraint signaled by the administration kept providers wary of tightening margins.

·      Medicaid Expansion and Enrollment: A major funding shift in Medicaid during this period was the outcome of state decisions on ACA expansion. Despite the federal administration’s opposition, several states (such as Idaho, Utah, Nebraska, and Oklahoma) adopted Medicaid expansion via ballot initiatives or legislation during 2018–2020. By 2021, Medicaid expansion was in place in 38 states, increasing coverage for low-income adults. This has indirect benefits for end-of-life care: people in their 50s and 60s with serious health conditions gained coverage, which could improve their health before they reach Medicare age and increase their ability to pay for long-term care services if needed. On the other hand, non-expansion states (predominantly in the South) left many poor adults uninsured, some of whom ultimately require safety-net hospice or nursing home care without any coverage. The Trump administration’s stance did not encourage expansion – and in fact, as noted, it attempted to curtail it – but the overall national trend was a gradual increase in Medicaid enrollment. By 2020, Medicaid/CHIP enrollment hit record highs, partly due to expansions and partly the pandemic (when disenrollments were halted). In short, more Americans had Medicaid coverage by the end of 2020 than at the start, which meant more potential reimbursement for end-of-life providers serving low-income populations, but also higher program costs that drew the scrutiny of federal regulators.

·      Aging Population and Service Demand: Underlying all policy changes is the demographic reality that the U.S. population over age 65 is growing rapidly. From 2017 to 2021, the number of Medicare beneficiaries increased substantially, as did the need for end-of-life care services. Hospice utilization continued to climb – by 2019, about 51% of Medicare decedents received hospice care and hospice patient counts and provider numbers were at all-time highs nhpco.org, nhpco.org. Similarly, demand for home health and personal care aides was rising. These trends put pressure on Medicare and Medicaid funding (as more users enter the programs) and have spurred experiments in cost control (like those payment models above). Providers are caught in the middle: they see growing need for services, but public payers are often trying to “do more with less” or shift costs to managed care or families. Any discussion of funding must therefore consider that even flat funding rates effectively squeeze providers when the patient population grows each year. For individuals planning for end-of-life care, this means the availability of services can be heavily influenced by these funding trends – e.g., whether a hospice has the resources to accept more patients, or a home health agency can staff enough nurses, may hinge on adequate reimbursement rates and coverage policies.

 

In summary, the late 2010s brought a mix of cost containment and shifting priorities in Medicare and Medicaid. Medicare Advantage’s rise and new payment models aimed to constrain costs and encourage efficiency, while Medicaid’s coverage expanded in some areas even as the federal administration tried to rein it in elsewhere. These broader funding currents set the stage for how end-of-life care providers operate and signaled areas of improvement (more home-based care coverage) as well as areas of concern (tighter payments and potential coverage gaps).

 

Biden Administration: Reversals, Continuity, and Adjustments (2021–2025)

 

When the Biden administration took office in January 2021, it inherited the policies and trends described above. In the ensuing years, it has taken a markedly different approach in some areas while maintaining or fine-tuning other initiatives:

 

·      Restoring and Expanding Medicaid Coverage: One of the Biden administration’s first acts was to reverse Trump-era Medicaid restrictions. Biden’s HHS withdrew approval for work requirement waivers (which had been halted by courts anyway) and signaled it would not approve new ones kff.org. It also rescinded the invitation for block grant waivers like Healthy Adult Opportunity, effectively abandoning that approach (and, as noted, moved to unwind Tennessee’s pending block grant demo). The administration actively encouraged states to expand Medicaid if they hadn’t yet and provided financial incentives (e.g. extra federal funding in the American Rescue Plan Act for new expansion states). Under Biden, Medicaid enrollment actually swelled to a historic high of ~90 million during the COVID public health emergency, because a continuous coverage requirement prevented states from disenrolling people cbsnews.com. By 2022 the U.S. uninsured rate hit a record low, partly thanks to this Medicaid stability cbsnews.com. These coverage gains directly benefit end-of-life care access – for instance, low-income older adults could maintain Medicaid coverage as they transition to Medicare, and dual-eligible individuals (those on both programs) had fewer gaps in coverage for long-term services. In 2023, the pandemic-era continuous enrollment policy ended, and states began an “unwinding” process of redeterminations that trimmed rolls. Still, the Biden administration has monitored this closely to minimize inappropriate loss of coverage for vulnerable groups. Overall, Biden’s policies have solidified Medicaid’s role as a safety net, in contrast to the prior administration’s attempts to shrink it cbsnews.com, cbsnews.com. This more expansive Medicaid posture generally bodes well for end-of-life providers who depend on Medicaid (like nursing homes and home care agencies), since it means a larger pool of covered patients and potentially more stable funding.

·      Medicaid HCBS Investment: A signature Biden policy affecting end-of-life care was the American Rescue Plan Act (ARPA) of 2021, which included a substantial (though temporary) boost for Home- and Community-Based Services. ARPA provided a 10% increase in federal Medicaid matching funds for HCBS for April 2021 through March 2022, with states required to use the extra funds to enhance and expand home-based care. This resulted in an influx of an estimated $36.8 billion in additional Medicaid HCBS spending over 2021–2025 tcf.org. Many states raised payment rates for home care workers, added new waiver slots for services (like personal care or assisted living supports), or invested in caregiver training and telehealth – all aimed at strengthening care outside of institutions. For assisted living facilities and home health providers serving Medicaid clients, this was a significant funding boost. While temporary, it marked one of the largest federal investments in long-term care services for seniors in recent memory. Biden also pushed (in the unsuccessful Build Back Better bill) for an even larger $400 billion investment in HCBS to permanently improve access and pay for caregivers. Though that broader initiative didn’t pass, the administration’s direction has been to expand home-based care capacity rather than constrain it. This is essentially the opposite of a block grant approach – it injected more federal dollars to encourage states to cover more people in community settings.

·      Medicare Payment and Policy Tweaks: The Biden administration largely left in place the Trump-era Medicare payment models like PDPM and PDGM, as these had already been implemented. However, CMS under Biden made technical adjustments: for example, it imposed a slight parity adjustment cut to SNF rates in FY2023 after data showed PDPM was inadvertently paying more than intended (indicating the model was not truly budget-neutral as promised) leadingage.org. Similarly, for home health, CMS in 2022–2023 evaluated data from PDGM and proposed rate reductions to claw back perceived overpayments. These moves have been controversial with providers but reflect Biden’s commitment to fiscal stewardship of Medicare – ensuring new payment systems don’t inflate costs. Importantly, Biden’s administration did not pursue ideas that Trump had floated like adding a Medicare home health copayment or reducing hospice payments; instead, it has continued annual payment updates (which, in 2022–2023, have been roughly 2–3% increases for hospices and SNFs, a bit higher than in the late 2010s due to rising inflation).

·      Medicare Advantage Oversight: While embracing Medicare Advantage’s growth, the Biden administration has taken steps to rein in excessive payments to MA plans. For instance, in 2023 CMS revised risk adjustment and auditing to curb overpayments, and proposed policies to “cut down on excessive Medicare Advantage payments” that were draining the Medicare Trust Fund tcf.org, tcf.org. The savings from these efforts theoretically help Medicare’s finances (extending the solvency of the Part A Trust Fund by a few years tcf.org) and can relieve pressure to cut provider payments. At the same time, Biden’s CMS continued to allow and even expand the new supplemental benefits in MA (e.g. more plans offering in-home support services), since those were authorized by law – effectively maintaining Trump-era MA flexibilities. In summary, Biden has supported MA innovation but with an eye on program integrity and sustainability.

·       Quality and Staffing Initiatives: A key difference from the prior administration is Biden’s focus on improving care quality in institutional settings. In early 2022, the White House announced a comprehensive nursing home reform agenda, including plans to establish minimum staffing requirements for nursing homes, increase inspection frequencies and penalties for poor performers, and improve transparency of ownership and finances. This agenda directly responds to chronic issues (highlighted tragically by the pandemic’s impact on nursing homes) and is aimed at ensuring better care for residents, many of whom are in end-of-life stages. If implemented, minimum staffing standards would likely require facilities to hire more nurses and aides – a positive for care quality but a challenge for funding, as Medicaid (the main payer for LTC) would need to foot much of the bill. Biden has called for higher Medicaid funding for nursing homes to accompany quality mandates, and in 2023 some new federal grants and incentives were proposed for staffing. Likewise, for hospice, CMS has begun updating survey processes and is expected to launch the Special Focus Program for hospices to weed out persistently bad actors (an effort originating from the 2020 hospice reform law). These actions signal a shift back to stronger oversight, contrasting with Trump-era leniency. Providers may face higher operating costs to meet new standards, but patients and families may see safer, more reliable care as a result.

·       Continuation of Value-Based Care Pilots: The Biden administration has largely continued or expanded value-based care models that began earlier. For example, the Home Health Value-Based Purchasing (HHVBP) model, which started as a pilot in several states in 2016, is being expanded nationwide in 2023 under Biden’s CMS. This program adjusts Medicare payments to home health agencies based on quality performance metrics, aiming to incentivize better outcomes. Similarly, accountable care organization (ACO) programs that coordinate care (including end-of-life care planning and referrals to hospice) have been promoted. The hospice MA carve-in demo launched in 2021 has been allowed to proceed through its test phase. In general, there’s policy continuity here – both administrations support the concept of paying for quality rather than quantity. The difference is mostly in emphasis and scale: Biden’s team is trying to integrate these models more broadly (e.g., nationwide HHVBP) and ensure they truly benefit patients, whereas the Trump team initiated many as smaller pilots.

 

In effect, the Biden administration reversed course on Medicaid policy (favoring expansion and investment over contraction) and fine-tuned Medicare policy (keeping structural changes like PDPM/PDGM but pushing for quality and integrity improvements). For end-of-life care providers, this has meant relief from the threat of coverage losses among patients, new opportunities (and funding) to expand home-based care programs, but also impending regulatory requirements that could raise operating costs (like nursing home staffing). It is a more supportive stance toward the safety net, coupled with a consumer protection orientation in healthcare.

 

Future Outlook: Funding Risks and Opportunities for End-of-Life Care

 

Looking ahead, end-of-life care faces an uncertain policy environment. The trajectory will depend on political developments – notably, whether there is a return to Trump-era policymaking after 2024 or a continuation of the current approach. Here we analyze potential risks and opportunities in future funding:

 

·      Renewed Attempts to Curb Medicaid Spending: If a Trump-aligned administration returns, Medicaid is widely expected to be a prime target for budget cuts. Republican leaders have openly discussed plans to “dramatically shrink Medicaid” through funding cuts and tighter eligibility cbsnews.com. This could take various forms: resurrecting block grant or per-capita cap proposals, eliminating the ACA Medicaid expansion, or imposing work requirements nationally. The impact on end-of-life care could be profound. Medicaid is the largest payer of long-term care, financing over half of all nursing home days and many home care services. Capping federal Medicaid funds (via block grants) would likely force states to do more with less, potentially leading to lower payments to nursing homes, reductions in optional services like HCBS waivers, and stricter enrollment criteria. Rolling back expansion would leave millions of low-income adults uninsured, some of whom would forego early treatment of chronic conditions and present later with worse health (raising the burden and cost of end-of-life care when they eventually qualify for Medicare or emergency Medicaid). Work requirements or time limits, if applied even to a subset of Medicaid recipients, could particularly affect younger disabled adults who need long-term services – any coverage gaps could interrupt their care continuum. In short, a return to Trump-style Medicaid policy poses significant financial risk for providers (through funding cuts and coverage losses) and could make access to end-of-life services more uneven, especially in poor or rural areas. Advocates warn that large Medicaid cuts would “leave more Americans without insurance, making it harder for them to get care” cbsnews.com, and long-term care providers themselves would likely fight such cuts as existential threats to their business models cbsnews.com.

·      Medicare Fiscal Pressures and Reforms: Medicare’s Hospital Insurance Trust Fund (which pays for inpatient and post-acute care, including SNF and hospice services) is projected to face insolvency in the next decade. Under Trump, policies (like the 2017 tax cuts that reduced Medicare revenue and repeal of cost-control boards) shortened the trust fund’s life by 2 years (from 2028 to 2026) tcf.org, tcf.org, whereas actions under Biden (like removing excess MA payments via regulatory changes and strong post-COVID economic growth) have extended it (current projection ~2035) tcf.org. Nonetheless, Medicare’s long-term funding challenge remains. In the future, we could see proposals to address Medicare’s finances that might affect end-of-life care funding. For example, some conservative policymakers have suggested raising the Medicare eligibility age (which would delay coverage for near-seniors), restructuring Medicare benefits into a voucher or premium support system (essentially pushing more beneficiaries into private plans with fixed subsidies), or expanding means-testing (making higher-income seniors pay more). A push to make Medicare Advantage the default Medicare option (as hinted in some “Project 2025” blueprints) could also emerge investopedia.com. For hospice and skilled nursing providers, such shifts could mean more patients in managed care arrangements and potentially more downward pressure on reimbursement rates, since private plans negotiate and often pay less. On the other hand, if Medicare attempts to save money by reducing provider payments or introducing beneficiary cost-sharing in certain benefits, that could directly hit end-of-life services – e.g., a future proposal might reintroduce a home health copayment (making patients think twice about using home health) or reduce the 100-day SNF benefit period. Any such changes would be hotly debated, but the risk is that in a cost-cutting environment, post-acute and hospice benefits might be on the chopping block. Providers should keep an eye on Medicare reform discussions and be prepared to demonstrate the value their services provide (for instance, hospice often reduces overall costs by avoiding expensive hospitalizations at end of life). An opportunity here is that if cost-effectiveness is proven, end-of-life care could attract support as part of the solution – for example, increased use of palliative care and hospice might be encouraged to improve quality and reduce futile high-cost care.

·       Emphasis on Value and Accountability: Regardless of which party is in power, the healthcare system’s momentum toward value-based care is likely to continue. For end-of-life care, this means future funding will increasingly be tied to outcomes and quality metrics. We can expect:

 

o   Expansion of value-based purchasing programs (e.g., tying a portion of SNF, home health, and possibly hospice payments to readmission rates, patient satisfaction, etc.). Hospices, in fact, may see a value-based pilot by CMS in the coming years once appropriate measures are established.

o   More integration of care through ACOs or bundled payments, where hospitals, physicians, and post-acute providers share responsibility for the patient’s episode of care. This could benefit providers who can coordinate well (a hospice or home care agency that partners effectively with hospitals might secure steady referrals in a bundled payment model), but it could disadvantage those who operate in silos.

o   Heightened oversight on fraud and abuse: The rapid growth of for-profit hospices and home health agencies has alarmed regulators, and we anticipate continued or increased auditing and monitoring of these services. Future administrations (even Republican ones concerned with fraud) may strengthen program integrity efforts, which, while not direct funding cuts, could squeeze unethical practices out and ensure dollars go to genuine care. Reputable providers may find the environment more favorable if bad actors are pushed out, but they will also need to invest in compliance.

 

·     Labor and Workforce Considerations: A critical factor for future end-of-life care funding is the workforce crisis. Simply put, without enough nurses, aides, and caregivers, additional funding cannot always translate into expanded services. The pandemic exacerbated staffing shortages in nursing homes, hospices, and home health. Wages for these workers are largely dictated by Medicaid and Medicare reimbursement levels. One opportunity is that future funding initiatives might target workforce development – for example, grants or adjustments to raise pay for direct care workers, loan forgiveness programs for geriatric specialists, etc. The Biden administration already signaled support for better pay (e.g., pushing for a $15 minimum wage, including for nursing home staff via contractors). If a Trump-like administration returns, it might be less aggressive on mandating staffing levels or wages, but it could still support training programs or immigration policies to expand the caregiver pool (though Trump’s earlier immigration stance was restrictive, a different approach to allow more healthcare workers could theoretically help solve the labor shortfall). Providers should watch for state-level initiatives as well, since many states are using their Medicaid programs to boost workforce funding (e.g., some states enacted wage passthroughs or bonuses for nursing home staff in 2022–2023). Ultimately, adequate funding for end-of-life care will require addressing workforce needs – any future scenario that fails to invest in the caregiving workforce could result in funds being available on paper but services not materializing due to lack of staff.

·     Potential Upside Scenarios: Not all future developments are threats. With increased recognition of the importance of end-of-life care, there are opportunities for new funding streams or supportive policies. For example, expanding palliative care upstream (for patients before they qualify for hospice) could become a priority, potentially through new Medicare benefits or inclusion in value-based models. This would benefit hospice organizations that diversify into palliative care services. Additionally, if the cost-saving nature of hospice is affirmed, even a cost-cutting administration might choose to promote hospice enrollment earlier to reduce hospital spending. Some experts suggest that encouraging advance care planning and hospice use is fiscally prudent and humane – future policies might incentivize these (such as paying physicians more for advance care planning conversations or requiring hospitals/ACOs to have programs in place for end-of-life care referrals). For assisted living, which currently lacks a strong federal funding source, a future opportunity could be pilot programs where Medicare Advantage plans cover limited assisted living benefits (building on the supplemental benefit trend). If shown to keep people out of nursing homes, this could be a win-win that plans and policymaker’s support.

 

In summary, the future landscape holds both risks and opportunities. A resurgence of Trump-era policies would likely mean attempts to restrain public spending on healthcare, with Medicaid cuts posing the largest immediate risk to end-of-life care providers. Conversely, the continuation of a Biden-like agenda would mean further investment in coverage and quality, but also heightened regulatory demands. All scenarios will involve grappling with Medicare’s long-term financing and the need to deliver care efficiently as the population ages. End-of-life providers and consumers should stay informed and engaged in advocacy, emphasizing the value of compassionate, appropriate care that these services deliver. The fact that many powerful stakeholders – from state governments to managed care organizations to patient advocates – have a vested interest in a well-funded long-term care system may serve as a bulwark against the most drastic cuts cbsnews.com. Nonetheless, planning for uncertainty is wise: providers might diversify payer sources (e.g., contracting with private insurance or Medicare Advantage), invest in demonstrating quality outcomes, and participate in pilot programs to stay ahead of policy changes.

 

Impact on Specific End-of-Life Care Settings

 

End-of-life care is delivered across a continuum of settings. While the policies discussed above have system-wide effects, each care category experiences unique impacts. Below is a breakdown by setting – skilled nursing facilities, assisted living facilities, home health care, and hospice – highlighting how funding and policy shifts have played out for each:

 

Skilled Nursing Facilities (SNFs)

Skilled nursing facilities (nursing homes) provide both short-term post-acute rehab and long-term custodial care, and they are a common site of care in one’s final months or years. Medicare covers short-term SNF stays after a hospitalization, and Medicaid is the dominant payer for long-term residents who exhaust their resources. Changes in these programs have materially affected SNFs:

 

·      Medicare Payment Changes: The transition to PDPM in 2019 was the biggest Medicare funding change in decades for SNFs. Under PDPM, payments now more closely track clinical complexity rather than therapy hours. In practice, this meant facilities that previously devoted resources to providing (and billing for) lots of therapy had to pivot. As noted, many SNFs reduced therapy staffing, impacting services like rehabilitation for end-of-life patients who might need to maintain mobility or swallowing ability. On the flip side, SNFs now receive higher rates for patients with complex medical needs (e.g. wound care, IV medications), which can benefit very sick patients nearing end-of-life who require intensive nursing. Overall Medicare spending on SNF care actually decreased slightly in 2019 (to $27.8 billion) medpac.gov, due to shorter lengths of stay and early effects of PDPM. In 2020–2021, Medicare SNF utilization dropped further because of COVID (elective surgeries fell and hospitals waived the 3-day stay requirement for SNF coverage during the emergency). SNFs thus saw fewer Medicare admissions, partially offset by relief funds. Going forward, how Medicare reimburses SNFs will influence their willingness to take certain patients. For instance, if Medicare payments tighten or if more beneficiaries are in Medicare Advantage (which often pressures SNFs for faster discharge), SNFs might become more selective, potentially making it harder for complex end-of-life patients to get a SNF bed for short-term care.

·      Medicaid Long-Term Care Funding: Medicaid typically pays for 60–70% of nursing facility resident days nationwide, but Medicaid rates are usually low – often below the cost of care, averaging only ~70% of private-pay rates medicaidplanningassistance.org. During 2017–2020, Medicaid rates in many states stagnated or only saw minor increases, as states were wary of budget growth and the federal administration did not push for increases. This squeezed nursing homes financially and often translated to staffing shortages or outdated infrastructure, affecting quality. Some Trump policies heightened concern: the push for block grants or per-capita caps implied that Medicaid funding for SNFs could be further constrained, since states under a cap might cut provider rates to save money. In contrast, under Biden, states in 2021–2023 have been using federal relief dollars to raise Medicaid nursing home rates (the “big wins” in Medicaid funding noted by industry observers ramaonhealthcare.com). For example, states like Illinois and Pennsylvania approved significant Medicaid rate increases for nursing homes tied to staffing improvements in 2022. Such efforts are critical – with more funding, facilities can hire and retain staff, directly impacting care quality for residents. The outlook for Medicaid funding thus varies in a supportive environment, we may see rate rebasing and higher payments (as is happening in some states now), whereas in a cutting scenario, facilities could face a funding crunch. For families, this translates to either improved care (if funding allows more staff and better training) or potential access issues (if under-funding leads to bed closures, as has happened in states with very low Medicaid rates).

·      Quality and Regulatory Climate: Funding and regulation go hand in hand. Under Trump, as mentioned, enforcement relaxed somewhat – fines were reduced, and there was less pressure on facilities to meet certain guidelines (e.g., postponing required infection preventionist hiring). While this may have lowered costs (avoiding some penalties or expensive upgrades), it arguably correlated with persistent quality problems. Under Biden, the pendulum is swinging back: proposed minimum staffing ratios would require facilities to spend significantly more on labor or face penalties. This is a double-edged sword for funding: if accompanied by higher Medicaid reimbursements, it could transform care for the better (more staff per resident); if not, it could push financially weak homes into deficit. The federal government has also indicated it will increase transparency – for instance, publishing more data on nurse staffing levels and facility ownership. Higher transparency and accountability might not directly change funding, but it could affect public and payer trust, influencing referral patterns (hospitals and families may avoid one-star facilities, putting financial strain on poor performers). In summary, SNFs are in a challenging position: they rely on adequate Medicaid funding to provide good long-term care, and on fair Medicare payments for post-acute care, all while regulators are raising the bar on quality. Financially, those that adapt (especially by reducing avoidable hospitalizations and improving efficiency) may find new opportunities in value-based partnerships, whereas those that cannot improve may face penalties or closure. For patients at end-of-life, the ideal scenario is a well-funded, well-staffed nursing home that can provide compassionate hospice or palliative care on-site; policy is slowly nudging things in that direction, but much depends on funding alignment.

 

Assisted Living Facilities

 

Assisted living facilities (ALFs) provide a community setting for seniors who need help with activities of daily living but not full nursing care. They are often a step between independent living and nursing homes, and many residents are in late life with progressive conditions like dementia. Generally, Medicare does not cover assisted living (room and board), and Medicaid coverage is limited – only some states use Medicaid waivers to help with assisted living costs for eligible low-income residents. Thus, assisted living is largely private pay, but Medicaid and other policies still influence it indirectly:

 

·      Medicaid Home- and Community-Based Services (HCBS): Some state Medicaid programs cover personal care services or offer HCBS waiver slots that can be used in assisted living. For instance, a state might have a waiver that pays for care services in an ALF for a Medicaid enrollee, though not the room and board. Under Trump’s administration, the overall federal stance was not to expand Medicaid HCBS – there were even moments of uncertainty (like the temporary lapse of spousal impoverishment protections for HCBS in 2019, which could have made it harder for married couples to afford assisted living if one spouse needed Medicaid kff.org, files.kff.org). The big picture was that no new federal dollars were dedicated to expanding assisted living access. In fact, had ACA repeal passed, many seniors in expansion states who used waivers for assisted living might have lost eligibility. Under Biden, with ARPA’s HCBS funding boost, states got a chance to pour resources into community care. Some states increased the rates they pay ALFs for Medicaid-covered residents or created new waiver programs. This is highly state-specific: for example, Minnesota and Washington have long invested in Medicaid-assisted living options, whereas states like Alabama or Mississippi offer very limited coverage for ALF care. A “state-level anomaly” worth noting is Oregon’s approach – Oregon was a pioneer in using Medicaid for assisted living and by the 2010s had one of the highest rates of Medicaid-funded ALF usage, allowing more elders to avoid nursing homes. That’s a model of what robust funding can do. Conversely, a state that opts for a Medicaid block grant might cap enrollment or spending on such optional services, which could reduce access. So, the funding for assisted living largely hinges on state Medicaid choices, which are influenced by federal policy and budgets. Assisted living providers, for their part, welcome Medicaid dollars but caution that Medicaid rates often don’t cover full costs, so they may limit how many Medicaid residents they accept. Increased HCBS funding (like Biden’s efforts) can encourage more facilities to participate in Medicaid if rates become more viable.

·      Medicare’s Influence via Beneficiaries: While Medicare doesn’t pay ALFs, most residents are Medicare beneficiaries, so Medicare policies that affect seniors’ health status or finances can have a ripple effect. For instance, Medicare Advantage plans offering extra home support benefits could delay entry into assisted living by keeping someone at home longer – or could supplement services for someone already in AL, improving their care. Another example: if Medicare were to cut home health coverage or therapy, an ALF resident might deteriorate faster, needing a higher level of care or hospitalization. On the flip side, if Medicare’s emphasis on preventive and chronic care management under Biden continues, seniors might remain healthier longer in assisted living. In short, Medicare sets the health context for ALF residents, even if not paying the facility directly.

·      Regulation and Quality: Assisted living is primarily regulated at the state level. Federal policy doesn’t dictate ALF quality standards (except minimal rules when Medicaid waivers are used, such as HCBS “settings” rules that require ALFs to be community-like and not institutional). The Trump administration delayed enforcement of some Obama-era HCBS settings regulations (pushing the deadline to 2022/2023), giving states and ALFs more time to comply with requirements like offering privacy, choice of schedule, etc. The Biden administration allowed further extensions due to COVID but generally supports these quality rules taking effect. While not directly funding, these regulations ensure that if Medicaid pays for assisted living, the facility truly offers a community-oriented experience. Compliance might impose costs on some facilities (e.g., physical environment changes), which is an issue if Medicaid payments aren’t high enough to cover them. State-level anomalies exist here too: some states have very robust oversight of ALFs, while others have light regulation. This can affect service quality markedly – for example, Georgia has been noted for issues in some assisted living homes due to limited regulation, whereas Arizona (which has many ALFs) developed stricter rules after some high-profile problems. If federal officials tie any future Medicaid funding to quality outcomes, ALFs might eventually see more standardized expectations.

·      COVID-19 Impact: A brief note – the pandemic hit assisted living hard as well, though they were not as much in the federal spotlight as nursing homes. Trump administration actions did allocate some Provider Relief Funds to assisted living in late 2020, recognizing their revenue loss and PPE costs. That was a one-time infusion. The experience has prompted discussions about integrating ALFs more into public health and emergency funding frameworks. Going forward, this might mean greater inclusion of ALFs in federal programs (for instance, being part of the National Healthcare Safety Network reporting, eligibility for certain Medicare demonstrations if they partner with medical providers, etc.). While not a direct policy yet, the trend could be that assisted living, historically outside the federal remit, becomes more recognized as part of the continuum – which could eventually lead to more consistent funding support, especially as the population in ALFs grows.

 

In summary, assisted living funding from Medicare/Medicaid remains limited but is slowly evolving. The biggest determinants are Medicaid HCBS policy and state innovations. Individuals planning for assisted living should be aware that Medicare won’t cover housing costs, and Medicaid help depends on state programs (which may expand if pro-HCBS policies continue, or contract if funding is cut). Providers in this sector should watch Medicaid trends closely and engage in state-level advocacy, as that’s where most opportunities for funding support arise.

 

Home Health Care

 

Home health care provides skilled nursing, therapy, and aide services to individuals at home, often after an illness or hospital stay, and is a critical service for many at the end of life (sometimes as a precursor or complement to hospice). Medicare is the largest payer for home health, covering seniors and disabled adults who are homebound and need part-time skilled care, while Medicaid and state programs cover some long-term home care (like personal care assistance) for those who qualify. The period from 2017 to 2021 and beyond saw important changes:

 

·      Medicare Home Health Reimbursement: The shift to PDGM in 2020 (described earlier) fundamentally changed Medicare’s payment calculus. By removing incentives tied to therapy visits, PDGM addressed concerns of overutilization but created new concerns that agencies might underserve therapy needs. Indeed, early surveys found many for-profit agencies planned to cut therapy by >20% medicareadvocacy.org. For patients, this could mean fewer therapy sessions to help regain function after an illness, unless clinically critical. PDGM also introduced a case-mix system sensitive to clinical factors and whether the patient had a recent hospital stay. Patients coming “from the community” (no prior hospitalization) now bring in lower payment medicareadvocacy.org, making long-term/chronic patients (for example, someone with heart failure who hasn’t been hospitalized recently but needs ongoing nursing visits) potentially less attractive to agencies financially. Coupled with the rule that home health episodes are now 30 days, agencies might be more inclined to discharge after one or two 30-day cycles if improvement plateaus, whereas before they might have continued a third 60-day episode. This is particularly relevant for end-of-life care: some patients with progressive illnesses need continuous home health services to monitor conditions and prevent deterioration, but PDGM’s structure may limit agencies’ ability or willingness to keep them on service for the long haul medicareadvocacy.org. The Biden administration has been monitoring PDGM outcomes; if data show access problems, there could be adjustments. Also, Medicare’s home health benefit has no built-in cost-sharing (no copay), and proposals to add one (floated in some budgets for deficit reduction) have not advanced – keeping the benefit free at point of use is crucial for patient access.

·      Home Health Volume and Spending: Interestingly, Medicare home health spending dropped in the late 2010s (partly due to prior rebasing cuts and then PDGM changes). In 2020, home health experienced disruption from COVID – some patients refused visits initially, and hospitals used waivers to send patients home sooner, which increased need for home health in some cases. Overall, the recognition of home health’s value grew during the pandemic, since it can keep vulnerable patients out of hospitals and nursing homes. Both administrations responded: Trump’s CMS allowed more telehealth and remote monitoring in home health on an emergency basis; Biden’s policies have looked at making some of those flexibilities permanent (e.g., allowing occupational therapists to start care, which was changed by law in 2021). The result is an opportunity: home health is poised to play a larger role in post-acute care models. For providers, this could mean more referrals and possibly stable funding if they demonstrate reduced hospital readmissions. For patients, increased use of home health means more can recover or be maintained at home, which is generally preferable.

·      Medicaid and State Home Care Programs: Many end-of-life patients, particularly those who are frail but not eligible for hospice or who want curative treatment alongside support, rely on Medicaid personal care or state programs for daily living assistance. These services often complement Medicare home health (which is time-limited and focused on medical needs). Under Trump, as discussed, no new federal boost was given to these programs, and some policies (like potential Medicaid caps) threatened them. Under Biden, ARPA’s funds and potential future initiatives aim to strengthen these. For example, with ARPA’s 10% HCBS FMAP bump, some states gave raises to personal care aides and expanded hours of care for clients. The continued push for HCBS could greatly benefit home health agencies that also provide Medicaid services or private home care companies participating in Medicaid programs. It’s worth noting that several states have moved to managed long-term care for Medicaid (where insurers manage home care and nursing home services for Medicaid recipients). This trend started pre-2017 and continues. For home health agencies, dealing with Medicaid managed care means negotiating rates with health plans, which can be challenging if plans try to keep payments low. A possible future scenario, especially under conservative governance, is more states adopting managed care and expecting cost savings. This would put pressure on home care providers to do more for less, but it might also integrate services better (for instance, one entity coordinating a patient’s home health, home care aide, and even hospice when needed).

·      Hospice and Home Health Intersection: Though hospice is a separate benefit, many home health agencies are also hospice providers or coordinate with them. Changes in one affect the other – for example, when the hospice carve-in to MA started, some MA plans formed partnerships with home health and hospice providers to create seamless palliative programs. Also, if future policy encourages palliative care programs (home-based) before hospice eligibility, home health providers might take on that role. We already see some of this via advanced illness management programs. The policy environment (especially under Biden’s Center for Medicare Innovation) is supportive of testing such models. This could open new funding streams for agencies that diversify beyond traditional home health into broader serious-illness care management.

 

In conclusion, home health care funding is in flux but trending toward greater recognition of home-based care as essential. The main Medicare payment overhaul (PDGM) reduced some utilization and revenue in certain areas (notably therapy-heavy care), but the drive to care for people at home has only strengthened, especially with lessons from COVID. For patients, maintaining Medicare’s robust home health benefit and ensuring agencies remain solvent and staffed to serve them is vital. For providers, succeeding in the future may require adapting to new payment incentives (focusing on outcomes, catering to both Medicare and Medicaid managed care, and possibly providing a mix of medical and non-medical services). Policy will continue to balance cost control with access needs for home health, with very different philosophies in play depending on the administration.

 

Hospice Care

 

Hospice is specialized end-of-life care focused on comfort for those with terminal illnesses, typically in the last six months of life. Medicare is the predominant payer for hospice, covering it under Part A for beneficiaries who elect the hospice benefit, and it accounted for roughly 92% of hospice patient days in 2021 healthpivots.com. Medicaid and private insurance play a smaller role (Medicaid hospices mainly for non-Medicare populations, like children or younger adults). Hospice policy and funding have seen some important developments:

 

·      Stable Core Funding with Annual Updates: Throughout 2017–2021, Medicare hospice payment rates received small annual increases (market-basket updates minus productivity adjustments, roughly 1–2% most years). There were no major cuts or dramatic changes to the hospice per diem rates under the Trump administration. Hospices did benefit from the temporary suspension of the 2% sequestration in 2020–2021, but that was a short-term boost. The payment structure (routine daily rate, etc.) remained the same. Thus, at a national level, Medicare hospice spending steadily grew as more people enrolled in hospice and for longer durations. By 2021, Medicare hospice expenditures reached $23.1 billion nhpco.org, nhpco.org, up from about $20.9 billion in 2019. This reflects moderate growth and suggests that funding, in aggregate, kept pace with the growing utilization. From a provider perspective, hospice margins for Medicare patients have been reasonably healthy on average (MedPAC often reports hospice margins in the 10% range for Medicare). However, those averages mask differences – some smaller or rural hospices struggle, whereas large for-profit hospices may have higher margins. Neither Trump nor Biden admins have enacted broad hospice payment reforms (the last big change was in 2016, before Trump, when Medicare differentiated rates for early vs late days in a hospice episode). The Biden administration continued the routine of small annual rate updates, although hospice advocates keep an eye on any talk of payment reform (e.g., MedPAC has sometimes suggested no updates due to margins, but Congress/CMS have given updates anyway).

·      Hospice under Medicare Advantage (The Carve-In Demo): A significant Trump-era initiative was testing hospice coverage within Medicare Advantage through the VBID model. Starting in 2021, participating MA plans in certain areas have taken on the risk for hospice services. Early reports suggest that under these plans, hospice providers negotiate rates (some at or even below standard Medicare rates) and MA plans can offer additional palliative care concurrently with hospice or expanded support. The ongoing effect is being watched: if this model expands after the test, it could fundamentally change hospice funding – moving from guaranteed fee-for-service rates to potentially contracted rates and networks. Under the Biden administration, the demo is still running (extended through 2024 and likely beyond). If successful, a future administration (Trump or otherwise) might decide to make hospice a permanent part of MA, given the broader trend of moving Medicare benefits into managed care. For providers, this is a double-edged sword: it could bring opportunities to innovate (like offering hospice earlier or integrating with curative treatments for a while), but also financial challenges if MA plans drive hard bargains. From the patient perspective, it might improve coordination (one insurance entity for all needs) or, conversely, limit choice of hospice provider if plans use networks.

·      Regulatory/Quality Initiatives: Hospice experienced some regulatory attention in both administrations. In 2019, HHS OIG released reports highlighting hospice deficiencies – for example, instances of poor care and lack of oversight. In response, bipartisan legislation (Hospice Act) was enacted at end of 2020 to strengthen surveys. The Trump CMS set in motion the rules for more frequent inspections and the Special Focus Program (SFP) to crack down on the worst hospices. By late 2023, the Biden CMS had not fully launched the SFP, temporarily pausing its implementation amid industry feedback and logistical issues homecarehospicenetwork.com. This indicates a cautious approach to avoid overly punitive measures without proper design. In the future, we can expect increased oversight of hospice providers – likely realized through SFP eventually, public reporting of survey results, and possibly additional quality measures (CMS has been adding hospice quality reporting requirements, like the Hospice Care Index introduced in 2022). Enhanced oversight doesn’t directly change funding levels, but it can influence which providers thrive. Hospices with good compliance and quality scores may stand to gain (reputation, referrals), whereas those with poor performance might face sanctions or exclusion from networks. The hospice cap (an aggregate payment cap per provider) is another funding constraint to note – it’s been in place for years to prevent excessively long stays or enrolling patients not truly end-stage. That cap is indexed to inflation; neither administration changed it substantially, though hospice growth in some regions (especially with a lot of long-stay patients) has meant more providers bumping against the cap. Future policy might tweak the cap or how it’s calculated if hospice lengths of stay keep increasing.

·      Integration with broader care models: There’s a growing movement to integrate hospice with upstream palliative care and other healthcare systems. Biden’s CMMI has signaled interest in a serious illness care model that, for example, could allow concurrent curative and hospice-like palliative services. If such a model rolls out nationally, hospices might diversify funding by providing pre-hospice palliative consultations (possibly billed to Medicare as an alternative payment model). Under a returned Trump administration, one might see more emphasis on privatized approaches like encouraging for-profit innovation or allowing more participation of hospices in Medicare Advantage and ACOs. In fact, one could imagine a push for “Medicare Personal Choice Accounts” or other ideas where beneficiaries get a budget for care – hospices would have to market their value directly. These are speculative, but not far-fetched given some conservative think-tank proposals lean toward giving patients more control and making providers compete on cost and quality.

·      State Medicaid and Hospice: It’s worth noting a state-level nuance: Medicaid is required to cover hospice for children and covers hospice for adults in many states (though it’s optional for adults). Typically, dual-eligible patients (Medicare and Medicaid) have hospice paid by Medicare, but Medicaid may cover room and board in nursing facilities for hospice patients and certain drugs not in Medicare formulary. If Medicaid funding is cut or restricted, hospices could see reduced support for those ancillary pieces, or in non-Medicare cases (like younger disabled patients on Medicaid), states might limit hospice benefit usage. Conversely, if states value hospice, they might invest more (as hospice can be less costly than hospital or nursing home care). This again ties back to how each state prioritizes its Medicaid dollars.

 

In essence, hospice care funding has been relatively steady and insulated compared to other sectors, thanks to the strong Medicare hospice benefit. Both Trump and Biden administrations maintained this benefit’s structure. The main differences have come in how hospices are being folded into new systems (MA demo) and how they are monitored for quality. Future funding risks for hospice could arise indirectly – for example, if Medicare overall faces cuts or if too many bad actors cause a backlash leading to payment reforms. Opportunities lie in the growing recognition of hospice and palliative care as crucial; there is bipartisan appreciation for hospice (few want to slash a benefit associated with compassionate end-of-life care), which is a strength for advocacy. Patients planning for end-of-life can be cautiously optimistic that hospice benefits will remain available and funded, though they should stay informed about whether their Medicare Advantage plan is part of any new model that might affect how they access hospice. Hospice providers should continue demonstrating high-quality care and adaptability (working with MA plans, participating in quality programs) to secure their funding in whatever system emerges.

 

State-Level Variations and Case Studies

 

While federal policy sets broad parameters, individual states often chart different paths in financing and regulating end-of-life care. These state-level anomalies can either cushion or amplify the impact of national trends. Here are a few notable examples that diverge from federal trends and significantly affect funding or service quality:

 

·      Medicaid Expansion vs. Non-Expansion States: The divide between states that expanded Medicaid under the ACA and those that did not has had downstream effects on end-of-life care. Expansion states (which increased Medicaid eligibility for low-income adults) saw larger increases in Medicaid enrollment, including many people in their 50s and 60s gaining coverage. This meant, for instance, a 60-year-old with no insurance in 2016 might have Medicaid by 2018 in an expansion state, allowing them to manage chronic conditions and potentially access home care services before turning 65. By contrast, in non-expansion states, many such individuals remained uninsured until they aged into Medicare or became impoverished enough for traditional Medicaid. This often led to delayed care and worse health by the time they reached end-of-life. A case study: Texas, a non-expansion state, has one of the highest uninsured rates. Its safety-net hospice providers report that patients often come to hospice with more advanced disease and less support, straining charitable care resources. On the other hand, Louisiana, which expanded Medicaid in 2016, saw significant gains in coverage for low-income adults; one study found better access to home and community care in expansion states as Medicaid could cover more people jamanetwork.com, fiercehealthcare.com. When the Trump administration encouraged non-expansion and approved work requirements (briefly in states like Arkansas), those states experienced coverage losses (Arkansas’s 18,000 disenrollments kff.org), whereas some expansion states took creative steps to maintain coverage (e.g., Montana had work requirements approved but never implemented them before they were voided). The Biden administration’s push for full expansion (including a provision to let nonprofits cover the gap in holdout states, which didn’t pass) shows federal swings, but ultimately states control this decision, leading to very different landscapes for end-of-life care access across the country.

·      Tennessee’s Block Grant Experiment: Tennessee provides a key state-level case study. It sought and obtained (in Jan 2021, under Trump’s CMS) a unique waiver called “TennCare III,” often referred to as a modified block grant. This waiver capped federal funding growth for much of the state’s Medicaid program in exchange for added flexibility and the ability for the state to share in any savings if they spent below the cap ccf.georgetown.edu, 80m.beehiiv.com. Importantly, the waiver excluded core services for traditional Medicaid populations (like nursing home care for elders) from the cap – those remained open-ended. However, other services and populations (including expansion adults, since Tennessee hasn’t expanded Medicaid, it targeted other groups) were under an aggregate cap. Had this model proceeded unchanged, it could have set a precedent. For Tennessee’s long-term care providers, the immediate funding didn’t change for nursing homes, but there was concern that if the state hit funding limits elsewhere, pressure could come to trim optional benefits or provider rates broadly. The Biden administration revisited this waiver – in late 2021 and 2022, CMS signaled it would require adjustments. By mid-2022, federal officials directed Tennessee to remove contentious features like the closed drug formulary and to revert certain funding formulas tennesseelookout.com. Essentially, the block grant idea was defanged. This back-and-forth illustrates how a state’s path (trying an aggressive funding cap model) collided with a new federal philosophy. For other states, Tennessee’s experience is a cautionary tale: there is innovation space in Medicaid, but politics can change the game. If a future Trump-like regime invites block grant waivers again, states might try similar plans – but we now have an example of the legal and practical challenges (including likely court battles and advocacy pushback).

·      State Medicaid HCBS Innovations: Several states stand out for proactively bolstering end-of-life relevant services, independent of federal moves. Washington State, for example, implemented the first public long-term care insurance program (WA Cares Fund) in 2022, financed by a payroll tax. While not Medicaid, it aims to provide residents a lifetime benefit that can be used for home care, assisted living, etc., reducing future Medicaid dependency. This state-led funding stream for long-term care is a significant divergence aimed at filling gaps that federal programs haven’t addressed. California is another noteworthy state – through its CalAIM initiative (started 2022), California is leveraging Medicaid to provide whole-person care, including transitions to hospice and additional services like medically tailored meals for seriously ill enrollees. California also used state funds to expand Medicaid to otherwise ineligible groups (such as undocumented seniors), meaning more people can get coverage for nursing home or hospice care under Medicaid. These actions show that even if federal policy is static or restrictive, states can expand access by putting their own money or flexibilities to work. Not every state has the budget or political will to do this, which is why we see divergence.

·      Quality Regulation Differences: States also differ in how they regulate and monitor care quality, which in turn affects service delivery. For instance, New Jersey and Florida both have a high number of assisted living facilities, but New Jersey’s regulations on staffing and training are stricter, often resulting in higher operating costs (and usually higher private-pay prices), whereas Florida’s lighter regulations have led to a more market-driven range of quality (some excellent facilities and some subpar). When federal oversight relaxed under Trump, states with weaker regulations did not compensate, and issues in some facilities grew. Conversely, when federal pressure increases under Biden, states like New Jersey are already aligned, while others must catch up. Georgia’s hospice industry offers another case: Georgia experienced a boom in new hospice providers (especially for-profits) in the late 2010s due to lenient licensing and certificate-of-need rules. This led to concerns about fraud or low-quality providers. Federal policymakers (OIG and MedPAC) highlighted Georgia in reports about hospice abuses. In response, Georgia began tightening some rules in 2021–2022. This is an example of a state reacting to a problem somewhat later than the federal observation. If federal rules like the hospice SFP come in, they’ll especially impact states that had looser oversight.

·      Rural vs Urban Disparities: State averages can hide disparities. Rural areas in many states face particular challenges: fewer providers, lower economies of scale, and often heavy reliance on Medicare/Medicaid. A state anomaly here is how some states supplement rural providers. North Dakota, for example, has used some state funds to support rural nursing homes at risk of closure. Texas, noted earlier, has seen many rural nursing home closures in the last decade due to low Medicaid rates and population shifts. Federal base rates are uniform (with some rural add-ons in hospice and home health), but state Medicaid policies cause variation. If a federal policy (like a funding cut) comes in, rural providers in states that don’t backfill funds may be more likely to close, leaving entire communities without local end-of-life services. This happened in Kansas and Nebraska where several rural nursing homes closed around 2018–2019. The state response can vary: some increase payment rates or offer subsidies, others do not.

 

Key takeaways: State-level differences mean that the experience of end-of-life care can be very different across state lines, despite the same “Medicare” and “Medicaid” names. Individuals and providers should understand their state’s policies: Does Medicaid cover assisted living? Are there wait lists for HCBS waivers? How robust are state nursing home inspections? These factors might matter as much as federal policy in the short run. Over time, federal standards (like a possible national nursing home staffing rule) could level some differences, but funding realities (state budgets and choices) will continue to drive divergence. End-of-life service providers often engage in state advocacy – for example, state hospice organizations lobby for higher Medicaid hospice per diem rates, state nursing home associations lobby legislatures for Medicaid funding increases, etc. Some positive case studies: states like Minnesota and Oregon have very high proportions of long-term care funding going to community-based care and consistently rank high on measures of long-term care services and supports (LTSS) performance. This is tied to decades of policy choices favoring such systems. Those states serve as models showing that with sustained investment and innovation, the outcomes (and costs) for end-of-life care can improve – fewer people in institutions, more in home-like settings, and often at similar or lower per-person cost. Federal policy can incentivize others to follow, but ultimately each state’s commitment is crucial.

 

Conclusion

 

Planning for end-of-life care – whether as an individual or a provider – requires navigating the intertwined Medicare and Medicaid systems and staying attuned to policy changes. The Trump era (2017–2021) brought significant shifts aiming to contain costs and decentralize decisions: new payment models (PDPM, PDGM) changed incentives in skilled nursing and home health, attempts were made to restrict Medicaid via waivers, and regulations on providers were relaxed. These moves had tangible effects: SNFs and home health agencies adapted care delivery in response to payment changes, and although major Medicaid cutbacks were largely prevented (thanks in part to legal challenges and Congress), the uncertainty alone forced contingency planning in many states. The Biden era so far (2021–2025) has largely reversed the restrictive approach to Medicaid (leading to expanded coverage and a large infusion of funds for home care) and kept Medicare on a path of gradual reforms with an emphasis on quality and access (e.g., promoting staffing in nursing homes, expanding value-based purchasing). For end-of-life care, the ongoing legacy of Trump-era policies can still be felt in the systems providers now use (PDPM/PDGM) and in the state policy experiments launched (like work requirements, which some states still pursue politically, or block grant ideas that may resurface). Meanwhile, Biden-era policies have provided short-term funding boosts and a roadmap for a more supportive role of government in long-term care.

 

Looking forward, those involved in end-of-life care should prepare for multiple scenarios. In a scenario where Trump-era policies (or similar philosophies) return, we might anticipate tighter public budgets for care, more pressure on states to shoulder costs, and a need for providers to demonstrate cost-efficiency or find alternative funding (such as partnering with Medicare Advantage or private insurers). In a scenario of continued Biden-like policies, we might see expansions of programs like palliative care, more sustained funding for HCBS, and stricter quality mandates that providers must meet (with help from increased funding). In either case, the trajectory of demographic change is unavoidable – more Americans will need end-of-life care in coming years, and the systems will have to adapt.

 

For individuals planning their care: it’s wise to stay informed about your state’s Medicaid options (like what it covers for assisted living or home care) and any changes in Medicare (such as your Medicare Advantage plan’s benefits or network for hospice). For providers: diversifying payers, engaging in policy advocacy, and focusing on quality will be key. As one expert noted, an “existential fight about Medicaid’s future likely lies ahead” cbsnews.com, cbsnews.com, but there is also strong coalition support for robust funding among states, providers, and advocates who “will be highly motivated to push back” on draconian cuts cbsnews.com. This push and pull will continue to shape the funding landscape.

 

In summary, Trump-era policies set significant changes in motion, some of which have been course-corrected by the following administration, but all of which highlight the importance of federal and state policy in sustaining end-of-life care services. Providers and patients alike should remain vigilant and involved in these policy discussions – the dignity and comfort at the end of life depend on it. By understanding the past and present policy environment, we can better prepare for the future, seizing opportunities to improve care while mitigating risks to funding and access.

 

Additional Sources:

Rudowitz, R. et al. “What Administrative Changes Can Trump Make to Medicaid?” Kaiser Family Foundation, Nov. 8, 2024 kff.org

kff.org. (Discusses Trump Medicaid waiver policies: work requirements and block grant options)

Musumeci, M. “Disability and Technical Issues Were Key Barriers to Meeting Arkansas’ Medicaid Work and Reporting Requirements in 2018.” KFF, June 11, 2019 kff.org. (Reports that over 18,000 people lost Medicaid in Arkansas due to work requirements)

Galewitz, P. “Trump’s return puts Medicaid on the chopping block.” KFF Health News/CBS News, Jan. 13, 2025 cbsnews.com, cbsnews.com. (Highlights Republican plans to shrink Medicaid, including rolling back expansion and work requirements)

Center for Medicare Advocacy. “Potential Impacts of New Medicare Payment Models on SNF and Home Health Care.” Oct. 31, 2019 medicareadvocacy.org, medicareadvocacy.org, and medicareadvocacy.org, medicareadvocacy.org. (Explains PDPM’s incentives to provide less therapy in SNFs and PDGM’s impact on home health therapy and community admissions)

• LeadingAge. “MedPAC Recommends Medicare Rate Cuts for SNF.” Dec. 13, 2021

leadingage.org, leadingage.org. (Notes Medicare is ~17% of SNF revenue and that PDPM was not budget neutral, with MedPAC considering payment reductions)

National Hospice and Palliative Care Organization (NHPCO). “NHPCO Facts and Figures, 2023 Edition.” (Data on hospice spending: Medicare hospice spending was $23.1B in 2021, up 2.8% from 2020 nhpco.org. Hospice utilization and provider growth trends)

Lambrew, J. “Health Policy for Older Americans: Better Under Biden than Trump.” The Century Foundation, July 9, 2024 tcf.org. (Comparative data showing Biden’s $36.8B increase in Medicaid HCBS funding vs. $0 under Trump, and the effect on Medicare Trust Fund solvency tcf.org)

• CMS Newsroom Fact Sheet. “Medicare FY2019 Payment & Policy Changes for SNFs.” July 31, 2018 cms.gov. (Announces PDPM implementation in 2019, focusing on patient conditions over service volume)

CBS/KFF Health News. “Trump’s return puts Medicaid on the chopping block.” Jan. 2025 cbsnews.com, cbsnews.com. (Medicaid enrollment hit record high under Biden; GOP plans entail big Medicaid cuts, with advocates warning of coverage losses)

• KFF. “Medicaid Waiver Tracker: Approved and Pending Section 1115 Waivers.” (Background on various state waivers including Tennessee’s block grant and others, as context for state case studies)
• Additional data from MACPAC, MedPAC reports, and state-specific sources as referenced in the text. (Used for general statistical context on spending and utilization)