End-of-life care changes are coming — We want to hear from you about their effect

By Bernadette Nunley
Chief Legal Advocacy Officer
Compassion & Choices

When President Donald Trump signed the “One Big Beautiful Bill Act” (H.R. 1) into law on July 4, it reshaped Medicaid in ways that will deeply affect end-of-life care. Combined with the law’s failure to extend Affordable Care Act subsidies, the harmful effects on end-of-Life care will be devastating.

Medicaid serves over 71 million people, including the poorest and most vulnerable, as well as many with disabilities. Now, steep cuts are coming to every state to offset lost tax revenue and new spending priorities. These cuts will increase burdens on patients and caregivers, reduce provider options, and lower care quality — ultimately leading to more suffering at life’s end.

According to the Kaiser Family Foundation, hospital and nursing facility payments will drop in most states. Even if you don’t rely on Medicaid, the facilities you use likely do. Reduced funding means fewer staff and diminished care for everyone.

Fifty-five rural hospitals face immediate deficits and closure. Another 380 independent rural hospitals are at serious risk. For rural residents, accessing end-of-life care will become even harder.

Medicaid covers care for 6 in 10 nursing home residents. With 1 in 4 nursing homes potentially closing, families will be forced to find alternatives or provide care themselves.  Long-term care is costly. Medicaid covers a lot of long-term care for some, but it does not cover all costs for everybody. Family caregivers already spend over $7,200 annually on medications, supplies, and other expenses, according to AARP — not to mention lost wages. Further, Affordable Care Act subsidies could expire by the end of year, causing premiums to rise by an average of 75%.

The law also introduces a new $35 co-payment for Medicaid services that were previously free. For those needing frequent care, this added cost could be a barrier to receiving necessary treatment.

Older adults are at risk of losing coverage due to provisions that would block implementation of two rules that were intended to streamline the enrollment process for Medicaid, especially for older adults and people with disabilities. Starting in 2027, states must conduct eligibility checks every six months for Medicaid expansion enrollees. This adds administrative strain for those already relying on caregivers.

The Congressional Budget Office estimates that these changes could result in 7.6 million people in the U.S. losing their health insurance by 2034, and another 8.2 million are at risk of losing coverage if ACA subsidies expire by end of year. Hospices that accept all patients, regardless of ability to pay, will struggle. Coverage losses will hit older adults living in rural areas, dual eligibles (people eligible for Medicaid and Medicare), and those in Programs of All-Inclusive Care for the Elderly (PACE).

The CBO also projects nearly 100,000 more hospitalizations annually and 1.6 million people delaying care — leading to worsened health and more complex needs at the end of life.

In total, the Medicaid cuts in President Trump’s domestic policy bill could result in more than 1,000 additional deaths every year, according to a report published in JAMA Health Forum.

Long-term care and dying are already expensive. Healthcare costs average $80,000 in the last year of life and $155,000 in the last 3 years. Out-of-pocket expenses are substantial and will rise with these changes. Conditions like dementia often require services not covered by insurance, leaving families with enormous financial burdens.

Hospice, palliative care, and nursing homes are all at risk. We must ensure adequate funding and enforce care standards. As a nation, we should strive to offer peace and dignity at the end of life — not more financial and administrative burden.

We’ve heard from many supporters that the recent expiration of Affordable Care Act healthcare subsidies and Medicaid cuts are drastically impacting the cost of their healthcare, especially at the end of life. We want to support you and understand exactly how deeply these cuts are affecting our advocates. Using our simple form, please share how cost increases and cuts are impacting your access to healthcare. We’ll be in touch with how these stories can help advocate for better and more affordable access to care.

About the Author: Bernadette Nunley, JD leads the Compassion & Choices Legal Advocacy & Policy Team. Together with staff across the organization, the team develops federal and state policies and leads litigation to authorize, ensure access to, protect, and improve the quality of end-of-life care and the full range of end-of-life options.