H.R.1 & Its Impact on End of Life Care

Myra
Jul 19
6 min read

Updated: Jul 25

The 24/7 news cycle has been talking about the One Big Beautiful Bill Act non-stop for months. We're all a little stressed. For the purposes of this blog specifically - how does this bill affect elderly citizens, those with disabilities & chronic illness, and low-income individuals (in all categories) at end of life? Let's talk about it.

It goes without saying that in end-of-life care we are surmounting a number of obstacles.

1) Access to care and resources, including availability,

2) access to facilities and caregivers, including availability,

3) affordability,

4) barriers to entry created by burdensome qualifiers, requirements, paperwork, and timelines,

5) the impacts of poor health or lack of community education and understanding on coping with all of the above, and

6) lack of support networks to help overcome all of the above.

And those are ASIDE FROM the demands that being in our final years require of our time, money, health, and emotional wellbeing. Some would say this is too much already. I agree.

The Big Beautiful Bill Act (H.R.1) is a sweeping spending bill which has the potential to be the largest transfer of wealth - from the U.S. populace to its richest citizens - in our entire history. But what are its impacts on the obstacles stated above? A key target of H.R.1 is Medicaid and it's where we'll focus for this article in order to find some answers.

First, some clarity. Medicaid & Medicare are government insurance programs, funded by taxpayer dollars, and administered by state & federal governmental bodies. They are not interchangeable and are two different programs entirely.

Medicare is available to citizens & lawful permanent residents over 65 in the U.S. Medicare includes multiple structured plans to choose from and has a prescription drug program as well. Medicare can exist & be utilized concurrently with private health insurance, as a secondary provider, if a person already has other coverage.

Medicaid is a health insurance program for "low-income adults, pregnant women, children, the elderly, and disabled persons." Medicaid is primarily administered by states with the help of federal government funding subsidies. For example, California has Medi-Cal, our version of Medicaid, and complies with federal government requirements to receive additional government funds. Depending on the state, immigration status may or may not impact whether you can receive Medicaid, and a number of rules & classifications apply before coverage is accessible. Medicaid exists to provide health insurance coverage for the most vulnerable populations in the U.S. Many people do qualify for both Medicare & Medicaid, depending on their circumstances - this is called dual eligibility. Okay, let's move on.

H.R.1 takes aim at Medicaid in the form of over a trillion dollars in budget cuts over the next 10 years (until 2034). Other items up for deep cuts include SNAP, which is food assistance to vulnerable populations, Medicare prescription drug programs, financial aid for higher education, etc. None of these programs exist in a vacuum so understanding that they all exist within a framework of care and resources for entire communities all over our country is important as we go forward.

This isn't the first time Medicaid has been subject to budget cuts, but it is the largest in scope and in our history. Because it's not the first time, we have a lot of information on what happens when we slice into Medicaid: everything gets harder and more expensive for everyone. You may be wondering how a program built for low-income people affects everyone else - aside from the question of morality, of course - and the answer is pretty straightforward. Reductions in Medicaid will lead to closures of local healthcare centers, hospitals, and providers across the nation. Especially in rural areas, these facilities rely on Medicaid funds to help keep their doors open. Low income individuals aren't the only people using the local health clinic or the city hospital. When these places close, access to healthcare is reduced, physicians and providers leave for areas that do have facilities, and options narrow significantly. These are not hypotheticals, they are based on data gathered over the years regarding previous cuts to government funded healthcare systems like Medi-Cal.

So, while the primary thing to know is that our most vulnerable populations will suffer most, it is of paramount importance to understand that this isn't good for anyone. When resources go away, they also historically stay gone or resume in a lesser form. For this reason, the Big Beautiful Bill Act has spiked fear and worry for millions, and rightly so.

Now, about vulnerable populations, specifically end-of-life clients: This includes individuals who are facing terminal illness, chronic illness, and permanent disability. Many of these folks are in hospice or long-term care, many are availing themselves of home health care options. In some cases, families are having to navigate these systems and in many cases a person facing their final years, months, or days is navigating these systems alone. These systems, facilities, resources, and providers are already pushed to their limits by budget issues, staffing issues, insurance compliance issues, and more. They are already dealing with more need than they can meet. Hospitals, hospices, rural health centers, and providers have come out en force to object to the Big Beautiful Bill Act. Citing closures and staffing shortages, as well as the H.R.1's new limits on higher education (which will exacerbate shortages in medical personnel such as doctors, nurses, etc) - these organizations have raised legitimate concerns for their communities. Again, when your local hospital closes because it relied on Medicaid funding to survive everyone suffers, but ESPECIALLY elderly, low-income, and disabled individuals.

So, the specter of our medical infrastructures crumbling is quite scary. It just is. There's no way to sugarcoat that. When our most vulnerable populations are destabilized by lack of access to food (SNAP) and healthcare, they are on a shorter timeline than our more stable populations. Even our more stable demographics in the U.S. are on shaky ground - more people are living paycheck to paycheck (and with no savings) than is sustainable in a country that is actively dismantling healthcare. In unhoused populations, it is normal to find people who lost everything due to medical debt and/or lack of healthcare, and homelessness is on the rise. So, for an elderly person on a low fixed income, the loss of their local healthcare facility or losing eligibility for Medicaid is a disaster. For a person with ALS, losing access to their testing facility or homecare program is a disaster.

What does it look like? When hospices close, doctors leave town, and the nearest hospital is 2 1/2 hours away? For someone who relies on public transportation? For someone who needs heart or diabetes medication, but those drugs are more expensive now or no longer covered? For a person with cancer who relies heavily on home healthcare and chemotherapy access? We know what it looks like. People don't seek treatment because they can't afford it - or they wait too long. When they do finally seek treatment, prognoses and outcomes are significantly worse. If a person with renal failure can't access healthcare, not only is lack of access and reduced coverage for worse benefits scary, it's a death sentence. We know what it looks like. And the timeline for these people is shorter - if we vote out politicians who support these policies and implement new (or restore old) protections, too much time will have passed. As of now, July 2025, it will realistically be early 2029 before many of these destructive changes can be addressed at all. That's 3 1/2 years at least. End-of-life patients don't have 3 1/2 years. They might have a year, but it's more likely they have months, weeks, or days.

How can we get through this? Well, long-term, we absolutely vote to support protections for healthcare and vulnerable populations, because those supports are good for us all, in fact. But in the short term, we must work within our communities to support our local healthcare infrastructures. We can:

talk to our vulnerable family members and community members and make sure they check their eligibility,
get important tests & appointments done now,
get extra supplies of important medications (if possible) & sign up for prescription discount programs,
and make sure they have access to resources and education regarding their options.

We can check in, follow through, and alleviate fear whenever possible.

Finally, this is the crux of death doula work & end-of-life care. Doulas can step into the breach and bridge gaps for providers and for clients. We can assist hospices and hospitals and long-term care facilities. A death doula is more than a person who assists the dying. Many of us are caregivers for end-of-life and disabled individuals. We can help people understand their healthcare options and assist them with paperwork and phone calls. We can provide companionship, comfort, and ease. We can step into the in-between spaces and offer our services.