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My Experience as a Chronic Illness Patient in a Failing Rural Hospital

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For decades, the issue of rural hospital closure has been a nationwide issue long before the pandemic exposed the cracks within the fragile system. In 2019 records were broken with 19 hospitals closing that year, bringing the decades total to 120.

From an outside perspective, these closures have impacts across large portions of many states, making it so that millions of people lack access to care. It forces people to have to drive very far for care. South Carolina, for example, is a state where some residents have to travel to a different county to receive OB/GYN care; 14 of the 46 counties as of last summer did not have an OB doctor.

Rural hospital closures directly result in poorer health outcomes for communities, but also can destroy local economies due to the vast numbers of jobs the hospital systems supported.

Until I moved to an area serviced by rural hospital systems, I had only really been aware of the issues above, and knew that the continued closures and lack of investment across rural healthcare would be harmful. Now living in an area dense with rural hospital headquarters that service huge swaths of the surrounding state, a different perspective arises: what it’s like to be a patient in a hospital that is financially struggling.

My first time coming to the local hospital clinic was very early on in the pandemic. It was a large building with a central landing area for patients to check in to one of the dozens of specialty offices, complete with an urgent care, pharmacy, lab, large imaging centers, and what looked like a once functioning food court. The halls were lined with shiny new posters introducing new primary care doctors — one of them being mine — new children’s doctors, and other inviting things like large scale plantings throughout the hallways and in the waiting rooms.

Seating in waiting rooms appeared to have been relatively new with more modern fabrics. Even the online patient portal looked as if someone actually had an ounce of care when they were considering the patient experience while navigating things online.

Of course during this time some factors were perhaps concealed and the collapse less visible to me as a lot of people were postponing care. I was able to get in quickly to meet my new primary care doctor. I was able to get in within about two months for a rheumatologist referral. I could get bloodwork and most tests within the same day, often the same week.

Within a few short months of moving I was able to get successfully established with my primary care doctor and three different specialists across two locations that were equal distance from my house.

Between late summer of 2020 and fall of 2022, the hospital system and the quality of care I received took such a drastic turn much of it became a blur.

From an obvious visual perspective, one day all of the beautiful plants were gone.

Hidden behind walls, much of the staff was also gone.

Early on, I had to make the choice to travel about an hour away to continue my care with my OB/GYN who relocated to a different practice. In that same time frame, I discovered that in the largest city in our area we didn’t actually have a rheumatologist permanently on staff and instead relied on locum rheumatologists. I had three of them in this time frame.

Relying on locum practitioners — a doctor working on a temporary few weeks to few months contract basis filling job openings and then moving on to the next job location — has a huge negative impact on continuity of care and for a major hospital location is a poorly thought out strategy for such a major specialty.

Just as a reference point, the average age where I live is about 38 years old, compared to Milwaukee which is 31 years old. Our population skews older, which is relevant to the rheumatology department as rheumatic diseases are often associated with aging populations. Diseases dealt with in this department do not have cures, they do not go away, and it becomes something that is managed between the patient and the healthcare professional. For someone my age (25), disease management looks a little different and the support of my care team is incredibly important to keeping my arthritis under control.

Disrupting this kind of care has meant that although my first rheumatologist was absolutely wonderful, the others did not want to provide me with any care. I simply was not their patient, the problems I encountered with my meds were not their problem, and as each one would get closer to fulfilling their own short-term contract they used that to push me off to the next doctor.

This kind of behavior is only further worsened by stigmas around age; in my case I shouldn’t be sick because I am so young, despite psoriatic arthritis often developing between the ages of 15 and 30 and my bloodwork confirming the disease. Having to constantly re-establish your care every two to three months with a new doctor when your care plan isn’t working or when your health condition is flaring is incredibly difficult and results in repeatedly traumatizing experiences and worse health outcomes.

Why do we remain stuck in the locum cycle? As a talkative patient who asks questions as to why I can’t get quality care, other healthcare providers have given me that answer: our hospital system cannot afford to pay competitively and our surrounding community does not offer the kind of perks as hospital systems with more urban settings do.

The revolving door of locum doctors however, is not the only point of interrupted care.

The rest of the doctors are also on a revolving door.

Because I was unable to receive the care I needed with rheumatology, my research aided by other community members online lead me to seek out a less intrusive medication (low dose naltrexone) — something that only our pain clinic would prescribe. Our pain clinic remains one of my favorite parts of our hospital system; these are just really great people with the ability to really teach us about our conditions in ways that non-physicians can understand.

But you see, I have had a new pain doctor each year. I remember being devastated when I got the letter that my pain doctor was leaving. He had taught me so much about arthritis and disease management and got me connected with a physical therapist who could really continue that education. I worried after having faced such horrendous care from new rheumatologists if that fate would be the same with the new pain doc.

The replacement doc, however, wasn’t a replacement; it was someone from the main hospital campus an hour away who ended up splitting their schedule so they could see patients at our location. She was actually the department head. She was wonderful, she didn’t really question any of the current context of my care, but came prepared with new research and new information for me to read to consider adding some supplements to maximize the effectiveness of my treatment — and not just for the arthritis but for other chronic conditions taking a full body approach to my care.

This interaction made me excited to follow up with her this last summer at our yearly appointment because I wanted to bounce questions I had regarding a different supplement I was having success with off of her and hear her opinions on the research points. But two weeks before our appointment? She decided the commute to our campus was too much, my appointment was pushed and I’d be meeting my third doctor.

The third doctor was really nice but she definitely didn’t have anything to say about the new supplement other than “it’s great this is working, keep taking it.” The appointment was mostly somber with all energy I’d normally have spent once again going over my full health profile — something that is not built in to the 15 minute follow up appointments — and quietly asking if she’d be sticking around. She said she would be, but my hopes aren’t all that high.

My primary care doctor has also left. The new primary care doctor doesn’t really want to be my doctor, so I’ll be looking for my third doctor in that arena as well.

The issue with all the other doctors leaving on such a continuous basis is that I should be able to fall back and depend on my primary care doctor to fill the gaps. But she simply doesn’t want to, isn’t available to, and never so much as sufficiently read my chart and notes from my previous doctor to continue ordering proper bloodwork that I need to monitor some of my higher-dosed vitamins.

I cannot get in to see my primary care doctor for acute illness or injury, which leaves me having to rely on urgent care.

In the past year I had to go to urgent care for treatment of an arthritis flare since the pain clinic doesn’t prescribe steroids — a gap in care I have to accept since the rheumatology department isn’t serving me — but because my primary care doctor decided she wasn’t comfortable prescribing the standard arthritis flare treatment, despite my pain clinic literally referring me back to her. So urgent care had to pick up my care. Which is deeply inappropriate for urgent care to have to do.

I again had to go to urgent care this Fall when my primary care doctor didn’t have any available appointments for weeks when I had an acute muscle injury. I didn’t have a broken bone that was sticking out requiring immediate emergency or urgent care; injuries and illness are things my primary care doctor is supposed to be able to manage. They are supposed to have timely appointments. If I have an infection and need antibiotics, waiting weeks isn’t viable. So I had to go to an urgent care full of very ill people to get a referral since my PCP couldn’t provide it.

This of course is reflective of a broader issue that is only compounded by being in a rural hospital system: staff shortages. Longer wait times, waiting weeks to be seen, and less doctors to go around has grown out of the pandemic — there are many articles on this so I won’t expand further than acknowledging the problem being larger than rural healthcare.

But what happened next in my saga of muscle injury, reflects back precisely on our failing rural hospital doing everything in it’s power to cut costs at every corner in order to remain open, with little consideration of the actual patient experience and quality of care being provided.

There was no one to schedule my appointment with the orthopedic surgeon.

They have relocated the once friendly greeters from the front landing spot of the building to be in front of each respective office, leaving a gaping sad hole in the front of the building, so you now check in at each office. Check in ladies have taken over the check in responsibilities and everything else that used to happen there.

And the appointment line doesn’t get answered.

The note sent up to the office to contact me for scheduling gets put on a pile where a greatly reduced staff makes their way through constantly behind and playing catch up.

I called relentlessly as instructed by urgent care to get my appointment as even they knew the actual referral calls were backed up. I was able to get in for my appointment immediately.

Anyone can get in for an immediate appointment in this department; my doctor pointed out that I was her only patient for the entire afternoon because the people in charge of the hospital were making so many changes that they neglected to care about a key position: appointment coordinators. My doctor was visibly distressed at the idea of how many of her patients — especially older patients who cannot simply show up to the hospital or know how to use the online messaging system — get stuck on an indefinite hold because there’s no one to answer the phone.

She had room for half a dozen more appointments and instead spent a lovely partial afternoon with me, giving me top tier medical care well beyond the scope of her traditional practice, and making herself available as a point of contact because she is there. She wants to be practicing medicine.

She has the time.

My new pain doctor said something of a similar variety.

These two doctors have made themselves fully available to not only answer my questions related to the specific reason I see them, but to research other odds and ends, to reach out to other doctors, to help if another doctor is being a jackass.

That isn’t normal.

Half of my care team shouldn’t be scrambling and making me manage prior authorization appeals on my own because they’re too swamped while other parts of my care team have so much time on their hands that they’re volunteering to help in other ways.

This is a result of resources being put in the wrong places. Of jobs being consolidated. Of the people in charge who are money focused not listening to doctors and nurses and patients when it comes to what we actually need, what will actually improve our care and streamline the efficiency to which we receive it.

And one might say, can’t you just go elsewhere?

I have tried. I’ve only succeeded once.

Rural healthcare often means only one option, but since I live in a “city” hub we do have two health systems.

I’ve tried to get in to the other hospital for rheumatology, that was over a year-long wait. And when I chose to postpone care because of a covid surge, my existing year-long wait had another nine months tacked on to it. I abandoned my search for a rheumatologist.

I was able to get a dermatologist with a private practice onto my care team. My once rather available dermatologist now has a six to seven month wait list and even as an existing patient will not provide any care through the message portal. I took the six month appointment I was offered but got in within a month at a private clinic and the skin issue I had is now completely resolved. I canceled my appointment and won’t go back.

I have a skin condition, but what if you have a mole that looks a little weird? Waiting six months isn’t OK.

And I lucked out that the private practice even took my insurance. That kind of thing could very easily keep most people stuck within one of the hospital systems that is falling apart around us, and for many folks serviced by these systems seeking out alternative care means traveling more than 30 miles to the next facility.

The bottom line is that being a patient in this environment is like getting stuck in one of those automated rotating doors and someone closed off the exit, so you’re stuck in these circles until either you or the hospital collapses.

Lacking any kind of continuity of care means that I get sicker, it means that I have to take on all of the extra burden to try and squeeze the parts that do function out of this health system to get even something that remotely resembles success. In doing so, I know that my time spent in urgent care takes away from other sicker patients who have more appropriately urgent care, and it adds to the strain on urgent care doctors, nurses, and staff since they’re picking up everyone else’s slack.

Even with some good doctors in the rotation, there’s the constant looming threat that they’ll leave or relocate just too far for me to travel. And there are a lot more prejudiced doctors in my experience, so when the good ones go every single patient has to face on a yearly basis the risks for discrimination and subpar care. For patients who have chronic, recurring health needs the risk of already having trauma due to past medical neglect is pretty high, and the revolving door means that if we choose to continue to seek the care we need we have to reopen ourselves to the potential for more trauma on a yearly basis.

A lot of people make the choice to not come back. To go without care.

And with less patients, comes less money and more hospital closures perpetuating the cycle until the infrastructure at large finally gives out.

Getty image by Mumemories

Originally published: February 24, 2023
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