The only time I’ve ever been admitted to a hospital was when I was diagnosed with Type 1 diabetes back in 2009. In the 22 years before then (besides being born), I’d never had any reason to visit a hospital. I’d never had a broken bone, an allergic reaction, or injuries sustained from sports (except for the one time I caught a softball with my bare hand or when I crashed into a teammate while trying to catch a ball in the outfield – she went to the hospital with a concussion; I iced my jammed thumb on the bench).
But upon reading one of the recent Narrative Matters essay from Health Affairs about a doctor’s perception of the emergency department as a patient, I was reminded of the two times I visited the emergency room due to diabetes and how I hope I will never have to return.
I used to date someone who worked in one of the many emergency departments in Cincinnati. I have a brief understanding of the chaos and stress the staff undergoes on a daily basis. I feel for them and have no complaints about how I was treated the two times I had a seizure as a result of hypoglycemia and was sent to the emergency room via ambulance.
But from a patient’s point of view, it was one of the most lonely and degrading experiences of my life, so much so that after my second seizure when the doctor wanted to admit me for further testing, I disagreed and persuaded him to discharge me. Besides the occasional vertigo, I didn’t sustain any injuries from the seizures, but that doesn’t mean I made the right decision.
For one, I didn’t want the extra costs, and two, I didn’t want to stay another moment in that hospital. Just like with the first seizure, the emergency medical technicians wheeled me on a gurney from the ambulance to the emergency room. There weren’t any available rooms so they put me in a hallway with a bunch of other sick patients. There, I waited for what seemed like hours before a friend would arrive to keep me company. Luckily, for the first seizure in Baltimore, I was only there a total of three hours, and eventually was put into my own room for the doctor to see me.
But after the second seizure in Florida, I was led to the bathroom to change into a thin hospital gown and then laid back on the gurney. For those of you who’ve been in hospitals, you know how cold they can be, and how thin those gowns are. Not only that, but they don’t provide much coverage, and here I was sitting in the hallway among strangers in a see-through gown without a blanket. I also felt sick to my stomach. The fall as a result of the seizure contributed to my nausea — there was also a huge baseball-size bruise on my forehead.
Fortunately, my long-distance boyfriend of the time wasn’t far from the airport when he received the call from the TSA official that I was being sent to the hospital. I had a seizure after going through airport security (another irony of my disease – the only time I’ve had seizures as a result of low blood sugar was at the airport). This was also before I had my insulin pump and continuous glucose monitoring (CGM) system. I feel these two technology advancements have helped immensely in preventing further complications and health care costs (if only insurance companies and Medicare would agree).
By the time my boyfriend had arrived and asked for some anti-nausea medicine, I was already puking (luckily, someone had supplied me with a plastic bag). I honestly don’t remember much after that. The doctor eventually consulted with me in the hallway on the gurney bed (I was never admitted or moved to a separate location). The doctor confirmed the seizure was a result of low blood sugar, which I already knew, but wanted to admit me just to make sure.
I’m sure he was doing what he thought best for my well-being, but at that point, I’d had enough of hospitals and gurneys. I politely declined. Then the doctor, probably middle-aged, turned to me and said, “Some insurance companies won’t cover your ER visit if you go against the doctor’s orders. You may want to check first.” I was too shocked to respond, and my boyfriend assured him we would check first.
“I can’t stay here,” I said. The back of my throat still felt like acid. I’d already paid my $250 co-pay for the ER visit; I couldn’t believe the insurance company would rather pay more for a night’s stay in the hospital than for an ER visit, but how did I know how billing really worked? Again, I’m sure the doctor was only looking out for my best interests, but for some reason, his words felt more like a threat.
And so it was decided. No matter the repercussions, I was vastly uncomfortable; I felt I could get better quality of care at my boyfriend’s place (since I was still out-of-state, having never made it on the airplane); and I didn’t feel like paying for anymore hospital bills. I’d had a seizure once before and knew how to handle myself post-event. So I accepted my discharge papers, and with my boyfriend supporting me, I hobbled out of the emergency room through the doors to the outside, where his friend waited to pick us up.
I haven’t been back to an emergency room. Luckily, since I acquired the insulin pump and CGM, I’ve been able to manage my blood sugar without the consequence of a seizure (and believe me, being in a long distance relationship for almost two years, my body had plenty of chances to act out). I have no desire to ever visit an ER again. And considering the rising health care costs of this country, this is not such a bad thing.
But should it be? Should my experience be justified? And it’s not just my quality of care that may have been tampered with – what about the quality of life for those in worse off situations? What about those who work behind the scenes? What kind of stress are they under? What kind of pressures are they dealing with? There’s much more to it than a bad ER story.
What do you think? What has been your experience as a patient or provider in emergency medicine? Any diabetes-related incidents? Feel free to share in the comments section below.