This student story was published as part of the 2025 NASW Perlman Virtual Mentoring Program organized by the NASW Education Committee, providing science journalism experience for undergraduate and graduate students.
Story by Alex Chou
Mentored and edited by Laura Dattaro
President Trump’s signature legislation, the One Big Beautiful Bill Act, will reduce access to quality end-of-life care for people with terminal illness currently on Medicaid, experts say.
Hospice, a form of medical care for patients with a life expectancy of less than six months that prioritizes comfort through pain management, is often paid for by private health insurance, as well as the public programs Medicaid and Medicare. Trump’s bill, signed into law on July 4, is estimated to lead to $1 trillion in cuts to Medicaid and imposes work requirements for Medicaid beneficiaries. These changes raise questions about what end-of-life care will look like for communities that rely on the program, including low-income and disabled patients.
Losing coverage and care
Changes to Medicaid in the legislation include patient eligibility for coverage. Starting in 2027, most Medicaid patients will be required to work at least 80 hours per month and provide documents verifying their hours every six months to receive benefits. Currently, there is no formal work requirement to receive Medicaid, even though 92% of adults on Medicaid are working or are unable to because of caregiving responsibilities, illness or disability, or school attendance, according to 2023 data from the Kaiser Family Foundation, a health policy research nonprofit.
The administration claims it aims to reduce fraud, waste, and abuse through these new rules. But health policy experts suggest they may pose a burden for patients already struggling to meet the administrative demands of documentation requirements.
The bill does “nothing to cut waste,” and its Medicaid work requirements are impractical to administer, said Alan Sager, a health law and policy professor at Boston University.
Two states have tried such work requirements. Georgia’s has been in effect since 2023, but Arkansas’ requirement was discontinued by a federal court less than one year after its implementation in 2018, after more than 18,000 adults lost coverage.
Instead of increasing employment rates, the laws caused residents — many of whom already met the work requirement — to lose Medicaid coverage because they were unable to meet the documentation requirements, said Julie Robison, a professor of medicine at the University of Connecticut.
“There's going to be lots of people like that,” Robison said. “People are just going to lose their Medicaid coverage. They won’t have health insurance, and so then they won’t have coverage for anything, including hospice.”
Loss of coverage may lead patients to avoid getting care, which ultimately results in more emergency department visits and a delayed disease diagnosis, at which point there are fewer effective treatment options, said Ellis Dillon, a professor at the University of Connecticut who studies hospice.
These patients are resistant to hospice care if other options like treatment have not been attempted first, which delays or reduces the chances of pursuing end-of-life care that focuses on comfort, Dillon added.
Hospice typically aligns with the preferences of the overwhelming majority of patients by enabling them to spend the entirety of their remaining time at home. Hospice also enables improved pain management, minimizes suffering, and maximizes time spent with loved ones, experts say.
Uninsured people also face more fragmented care, as they may leave the emergency room after being treated for a serious illness only to return after realizing they can’t afford their medications without insurance, said Rachelle Bernacki, a geriatrician and palliative care clinician at Brigham and Women’s Hospital.
More uninsured people means more terminally ill patients will stay in the hospital, Bernacki added. “We can’t discharge someone who’s actively dying or in the process of dying without the proper care.”
As these patients fill hospitals instead of moving to home hospice or comfort-focused facilities, health care practitioners will find themselves facing “even more of a capacity crisis,” Bernacki said. “How we’re going to manage that, I don’t know. It’s really scary.”
Bill hits seniors at nursing homes
While the work requirements largely target low-income adults, the bill may also impact end-of-life care for seniors.
Many nursing homes are heavily dependent on Medicaid payment rates, and even with those payments, many homes already lack sufficient revenue to fund safe and dignified end-of-life care, Sager said. Some states may respond to Trump’s bill by cutting rates further.
Patients who qualify for and receive coverage from both Medicare and Medicaid typically rely on the former to pay for hospice services. But Medicaid often covers living space, meals, and daily care in nursing homes for these patients — where, Sager says, about a quarter of Americans die each year.
Even so, nursing home beds have been “few and far between” since the pandemic, Bernacki said, raising questions about where dual-eligible seniors will go if beds are even more sparse.
“That’s already a difficult process to find a bed that’s Medicaid eligible for a hospice patient, but I think that will become even more challenging than it is currently,” Bernacki said.
Ultimately, the bill deepens disparities in an already stratified system of end-of-life care by targeting the same groups that are less likely to use hospice or to use it for a shorter time, Dillon said.
Black patients generally receive less hospice care than white patients, according to a 2024 study published in the Annals of Palliative Medicine. And people with low incomes are less likely than higher-income people to be able to access the resources to die comfortably at home, a 2013 study in JAMA Internal Medicine found.
Moving forward, individual states will likely opt to take on varying degrees of responsibility in addressing the coverage gaps set by the bill, Bernacki said.
She said she hopes her own state will find ways to fund care for patients impacted by the bill but worries other states might not do the same.
“There’s a moral imperative, right, for us to take care of our most vulnerable,” Bernacki added.
Top image: Changes to Medicaid will impact those seeking hospice and nursing home care. Credit: Kampus Production.
Alex Chou
Laura Dattaro is a freelance science journalist and the administrator and communications manager for the Council for the Advancement of Science Writing.
The NASW Perlman Virtual Mentoring program is named for longtime science writer and past NASW President David Perlman. Dave, who died in 2020 at the age of 101 only three years after his retirement from the San Francisco Chronicle, was a mentor to countless members of the science writing community and always made time for kind and supportive words, especially for early career writers.
You can contact the NASW Education Committee at education@nasw.org. Thank you to the many NASW member volunteers who lead our #SciWriStudent programming year after year.
Founded in 1934 with a mission to fight for the free flow of science news, NASW is an organization of ~2,600 professional journalists, authors, editors, producers, public information officers, students and people who write and produce material intended to inform the public about science, health, engineering, and technology. To learn more, visit www.nasw.org.
