Informed Care is Better Care
A Doctor’s Perspective on Being a Patient in the Conventional Health System
I can hear the audible tick, tick of the unnumbered clock perched on the wall of that pristine waiting room. Though it’s only been a few minutes, time isn’t behaving properly today, so it’s felt like hours. My wife is holding my hand. The nurse steps through the threshold, calls my name, and ushers us into a small exam room where the doctor will see us.
I’m in my fourth year of medical school, amazed that my training doesn’t somehow grant immunity to clammy palms and nervous sweat as I try to gather myself in the Endocrinology office. The nurse smiles, takes my vitals, and tells me the doctor will be in soon, as she leaves.
A few months prior, I had volunteered to be the standardized “patient” for a physical examination review course for our medical school. There, I had sat on an exam table near the podium, at the front of a large auditorium brimming with hurried medical students in short, white coats. They, like myself, were anxious for the looming licensing examination to be a distant memory long behind them.
The attending physician that day, beloved among the student body for his dry humor and famous cowboy hat, approaches the raised platform next to me, and begins demonstrating for the class the intricacies of the full head-to-toe physical examination.
I look over at my wife, and we decide that day to schedule an appointment.
With practiced hands, he moves sequentially down each body system, starting with the scalp and eyes, and moving methodically to the nose, mouth, and ears, narrating aloud for the class.
He stops at my neck.
“Hmm, that’s a little firmer than usual,” he notes softly to me.
I look over at my wife, and we decide that day to schedule an appointment.
The labs had come back mildly abnormal, and now, instead of being a standardized, pretend patient, I am a real one. My initial visit with a provider from the local clinic a week later was brief, anonymous, and forgettable. Somewhat disappointed, I left with a slip for an ultrasound, and drove to the nearby hospital imaging center.
The automatic doors greet me with a burst of cool air and the wafting scent of fresh coffee as I sidle through the atrium and follow the signs to Radiology. I peer through the adjacent emergency room doors to my left into the bustle where Christina is completing a shift. I manage to catch her eye.
We head down the dimly-lit concrete hallway together and arrive at the front desk. The office clerk asks for my ID and insurance card, and then slides a paper to me. The page is practically engulfed in a sea of fine print. It states that I agree to pay for whatever amount of the ultrasound insurance doesn’t cover.
“Okay, but how much would that cost?” I ask, curious.
“I have no idea,” the clerk replies. “That depends on your insurance.”
“Sure, but is there a ballpark price?”
“It just depends on your insurance,” she says. “We’ll need a downpayment on this today as well.”
A second layer of anxiety having nothing to do with my neck began to take hold of my thoughts. Immediately, I suppressed it.
I glanced at Christina, seeing the subtle tells on her face of worry and frustration. The year prior, with no medical problems, we had elected for a high-deductible “catastrophic" insurance plan, with a $400 per month premium each, and out-of-pocket costs up to $10,000. We had been lucky enough to never need to use our health insurance before.
With such a high deductible, we knew that whatever the mysterious cost of the ultrasound was, we would be paying for it in its entirety. A second layer of anxiety having nothing to do with my neck began to take hold of my thoughts. Immediately, I suppressed it. Worry about the money later, I thought. I just needed an answer as soon as possible.
“Okay, let’s just get this over with,” I said, reaching for the pen with one hand as I fumbled for my wallet.
After putting off this new patient appointment off for a few months, my worries have surged again and I’m eager for the consultation. The exam room door opens. I shake the hand of a kind and polite Endocrinologist, and nervously crack some truly awful jokes to hide my apprehension of what might come next. His name had come at Christina’s recommendation; by a stroke of luck, she had just completed a rotation with him.
He asks me some questions, reviews my labs, and examines my neck. Unfortunately, the CD I bring from my prior ultrasound doesn’t interface with his computer. When we try to bring up the actual images, all we see is the general text report detailing some nonspecific thyroid enlargement.
“I don’t feel any true nodules there,” he states, “but it might be worth getting a repeat thyroid ultrasound. We can do them right here in the office, if you’d like.”
I say yes. I’d like to know as soon as possible what’s going on. He takes me to a procedure room, where I lie back, and shiver slightly as the cold gel squirts onto my neck. The ultrasound relegated to the corner of the room begins to wake with a purring, electric whine.
As a patient, I had been hard on myself for not knowing how to navigate the system, when in reality, I should have been asking, how could anyone?
I feel the gentle pressure of the probe fan back and forth over my neck as I wait, my eyes nervously taking stock of every detail of the ceiling above. The doctor leans into the screen, and calmly points out the relevant features to me and my wife.
“See those changes right there, with the vessels?” he explained, knowing that I’m a medical student. I crane my next to get a better view of the screen. “That’s classic for this type of thyroid disease. No need to do any advanced procedures today.”
Not a nodule, not cancer. Good news. I sigh in relief as I sit up, wipe the gel from my neck, and get dressed. We discuss the different treatment options and make a plan, with some follow up testing and a visit in a few months. I leave reassured, like a weight has been lifted off my chest.
But somewhere lurking in the background, an anxiety about what would come next still lingers.
Weeks later, I step back inside the house with a letter in my hand. I had just been out for a trip to the mail. Christina looks up from her computer, reads my face, and understands. This is the big one. It’s clearly the bill from the insurance company, and I have no idea what I’ll find. I hesitate. Is this going to wipe us out? What are the next few months going to look like? Slowly, I tear open the envelope and orient myself, scanning the tables and fine print for any semblance of the bottom line. My eyes fixate on the final number. I’m floored. When you add in all of the costs for the visit—the doctor’s bill, the labs, the imaging—it was more than $500.
In retrospect, I hadn’t been a great advocate for myself as we stumbled through the economics of the health system…I felt like just one, small person.
How did it happen? I mean, I do remember that part. A doctor told me it was a good idea and I said yes. I said yes to all of it. Looking back as a doctor now, I agree with everything he did, and I’m truly grateful for it. I wasn’t disappointed with the doctor; I was disappointed with myself. In retrospect, I hadn’t been a great advocate for myself as we stumbled through the economics of the health system. I’d love to imagine that after this, I fumingly called up the insurance company asking for an explanation, tenaciously going through each item line by line. But I already knew none of that would happen. The system felt gargantuan, complex, and daunting. I felt like just one, small person.
I still had the bills from the initial workup too. I didn’t know that getting labs and an ultrasound from a hospital carried a much higher fee than if we went to a clinic. I thought a lab was a lab. They don’t teach that, even in medical school.
So, I just shrugged my shoulders with a mix of frustration and shame.
By all accounts, it certainly could have been worse. I’m glad that, medically, things went well. But I couldn’t help feeling that I traded one anxiety for another that day.
Our lives depend on our car’s brake pads working properly, every single day. If they start to wear down, I can call three different auto shops before the end of the day to get quotes on labor and parts, before I sign on the dotted line. As my friends can attest, I know literally nothing about cars, but because I get to compare prices, I can make a solid, informed decision, and plan ahead for the expense.
If you don’t know how much something is going to cost until after the bill arrives, how could you ever plan for it?
Despite this standard in almost every other industry, in medicine, hidden pricing is the status quo. A lack of transparency is one of the main challenges still afflicting the modern health system, and the patient is worse for it. If you don’t know how much something is going to cost until after the bill arrives, how could you ever plan for it?
The doctors aren’t to blame; they're just practicing the medicine as they were trained, and honestly, they don’t know the price, either. You may agree on a plan with your doctor about needing that imaging, but then wonder (and fear) how much it’s actually going to cost. Or, like me, you may just try to ignore it altogether for a while and hope for the best. There’s little to no opportunity to easily shop around, which means facilities can charge whatever they want. Is a CT scan from Location A twice as good? Then why is it twice as expensive as Location B? Wouldn’t it be nice to have that information ahead of time?
All of the little steps in between, from going to the lab to worrying about the bill, are potential obstacles to effective care.
Looking back at as both a doctor and a patient, I can see that the path from symptom to diagnosis to treatment isn’t always as clearcut as a medical textbooks suggest. All of the little steps in between, from going to the lab to worrying about the bill, are potential obstacles to effective care. As a patient, I had been hard on myself for not knowing how to navigate the system, when in reality, I should have been asking, how could anyone?
Direct primary care is powerful precisely because it is so transparent. By cutting out the middleman, DPCs are able to negotiate directly with vendors and offer deeply discounted rates on medications, labs, and imaging. We know things cost less with us because we called each company and we negotiated the better deal. We know which facilities charge less for their imaging, and that means you do, too. In addition, most procedures and in-office labs are included in the membership. Best of all, we get to put those prices upfront, where you can see them. It’s one more way that we get to deliver value to our patients.
If we want the cost of health care to decline, then we need to know how much things cost before we pay for them. As doctors and patients, Christina and I have seen the aftermath of our current health system, and we believe fixing this truly matters. Transparency is at the core of making health care affordable and accessible, and direct primary care doctors as advocates for health are making that attainable, even in a broken system. When patients are informed consumers of health care, they can make better decisions, and get better care.
—KJM
