Cost Awareness Anecdote: The Cost of Apples

The following anecdote is by Samuel Yang, a patient from Maryland.

Up until last May, my experience of medical costs was limited to the $100 per month premium I contributed towards my employer-sponsored insurance and the nominal co-pays associated with well-child checkups and generic prescriptions. There was never any hesitation in seeing a doctor or filling a prescription. That all changed when went I back to school.

I blindly signed up for the school-recommended family insurance and naïvely assumed myself, my wife, and my two young children would receive whatever health care we needed at a relatively small co-pay. The upfront premium of $10,000 was high, but I believed that this would cover whatever life threw at us. However, two experiences woke me up from my ignorance: my wife's endoscopy and a visit to the pediatrician.

In July, my wife was sent by her doctor to get an endoscopy to determine the cause of her stomach pain. In the weeks following her procedure, we started receiving statements from our insurance company. The statements declared that we were responsible for the full amount. We received the following explanation from our insurance company, “We don't cover preexisting conditions.” As we argued with the insurance company, the hospital bills started trickling in: $1200 from the outpatient center, $200 from our family physician, $400 for the anesthesiologist and $200 from the lab. We received six bills demanding $2600 for one procedure. As I examined the bills I was shocked by the redundancy—why is the cost for the anesthesiologist not included in the outpatient center bill? Why do I need to pay my family physician twice (the initial visit and the follow-up) for a procedure she ordered us to do? Besides feeling hung-out-to-dry by my insurance company, I felt taken advantage of by the medical system. It seemed as if everyone in that hospital wanted to include something for our visit. After fighting tooth and nail to get our insurance to cover my wife's endoscopy, they finally relented. Still, we were left with $700 to pay. For an unemployed student, $700 is not a small co-pay.

I studied the coverage booklet put out by my insurance, and I still do not understand what is covered and what is not. What I found was something similar to how we were billed for my wife's endoscopy: the procedure itself is covered one way, labs are handled another way, and prescriptions are an entirely different matter. How am I supposed to know what labs or prescriptions are associated with an endoscopy?

Compared to my wife’s endoscopy, my daughter’s first visit to the pediatrician should have been straightforward. A fever that lasted three days followed by a rash was a simple diagnosis for her experienced pediatrician. What is not simple is the billing and insurance struggles we are facing. Our insurance company decided that my daughter's fever was a preexisting condition, and as we fought with them to fulfill their responsibility, the pediatrician's office contacted us that the $115 fee is actually $321. Again, the feeling of being taken advantage of is overwhelming. It could be that our doctor's office is honest in their error, but I have never received services or products charged to me like this. In other words, when I go to the store, I know exactly how much a pound of apples will be long before I get to the cashier—and there are no “preexisting” conditions that add hidden costs at the register.

I've learned a lot about medical cost of care; that is, care costs a lot and it's not straightforward what the cost is. I know that we have paid $11,021 for an endoscopy, a visit to the pediatrician and spotty coverage for the rest of the year. It’s not merely that medical care is expensive, it’s also that I have no estimate of what my costs will be. Getting new brakes on my car is expensive, but the mechanic is very careful to give me an itemized estimate before the repair is made. Recently, my wife, after a particularly exhausting week, started experiencing pain in her chest and a tingling sensation in her arm. Being a nurse, she knew exactly the tests that would be ordered if she went into the hospital.

Despite my attempts, she refused to go to urgent care knowing that the cost of the visit, even if our insurance company cooperated, would be enormous. There's now a hesitation to use our medical resources that was never there before.

Cost-awareness anecdote: Ultimate Sacrifice

The following anecdote is from Dr. John Maa, Assistant Professor of Surgery at the University of California, San Francisco

An estimated 60% of American bankruptcies result from overwhelming medical costs. My uncle’s tale illuminates the dual tragedy of suffering catastrophic illness and being uninsured.

The 2008 recession claimed my uncle’s job, health benefits, and assets, except for a small inheritance. By 2009 he found work (but not health coverage) as a consultant.

One day he noticed that his eyes were yellow. He emailed a photograph, and I immediately recognized jaundice. I calmed him by suggesting benign causes such as hepatitis, gallstones, or liver cirrhosis. But I secretly dreaded a liver or pancreas cancer, given his recent weight loss and itching.

Laboratory and x‐ray tests, which he charged to his credit card, all suggested cancer. His doctor in New Jersey indicated urgent surgery was necessary. An appointment was unavailable for weeks at the county hospital, and private surgeons wouldn’t see him without a cash deposit. Time was ticking. Cure was already unlikely, and delays were allowing the tumor to grow. He decided to travel to the West Coast to expedite surgery.

My uncle arrived around midnight, glowing yellow; he had worn sunglasses to avoid frightening other airline passengers. He was immediately admitted to undergo a procedure to identify the site of blockage and insert a plastic stent to drain bile externally. While awaiting the outcome, I had a premonition that the worst was yet to come. The doctors brought dreadful news that a massive tumor, too large to remove surgically, lay centrally in the liver. The remote possibility existed of a benign condition masquerading as cancer. The aggressive option was upfront chemotherapy and radiation to shrink the tumor, for possible surgery afterwards. But several surgeons deemed the case hopeless, and estimated my uncle had only 6 months to live. They recommended hospice, and a more comfortable internal metal stent. My family chose not to share these findings with my uncle until he recovered from anesthesia.

The crushing blows continued. Within 36 hours, my uncle lapsed into a coma from kidney failure induced by bile toxins. Knowing the costs, we refused transfer to the ICU. Dialysis was necessary, but the nephrologists regarded the situation futile and refused treatment, comforting us that dying from kidney failure was painless. Miraculously, he rallied. Seeing improvement, the nephrologists started dialysis. We could finally share with my uncle the difficult choices ahead.

He responded “It’s hopeless. Why risk money that could provide my daughters’ education?” He asked to be made “do not resuscitate”, and declined surgery. Two weeks of recuperation made transfer to less expensive skilled nursing care possible, but here I learned it takes money to save money. Ambulance transport was mandatory, costing $1700. As I read the dispatcher my credit card information, I wondered if I could have driven him myself.

In the following days, we tried everything to minimize costs. My uncle had a fever, but refused evaluation in the ER, and was treated with blankets and oral antibiotics. His fever broke, as did the stitches on his stent, which I re‐sutured at the bedside.

In the end, my uncle made the ultimate sacrifice for his daughters by rationing his care. Death came swiftly, only 72 days after he became jaundiced. He never received metal stents, or saw New Jersey again.

His final medical bills totaled over $250,000. Charity care was denied, and MediCal unavailable since he was from out of state. After receiving a 20% discount for paying in a lump sum and in cash, we negotiated a final 40% discount.

The costs of his care can be translated as follows. Each session of dialysis equaled a month of private college tuition. Each day’s blood work would have provided a year of textbooks. The daily hospital room charge would pay for a half‐year in the dormitory. The anesthesia fee would have purchased a full year’s meal plan.

My uncle’s cause of death remains unknown. Weeks into treatment, his tumor markers came back normal. Surgery might have been curative, or confirmed a hopeless situation. The cost to know with certainty would have consumed his inheritance. The World Health Organization recognizes this universal tragedy worldwide: “The poor are treated with less respect and given less choice of providers. In trying to buy health from their own pockets, they pay and become poorer.”

Whenever someone faults the medical system for the epidemic of bankruptcies, I ask instead: My uncle was 59, and for decades had contributed to the system by paying health insurance premiums while employed. Did the system treat him fairly when he needed care?

Cost-awareness anecdote: Getting an estimate

The following story is from Monte Jaffe, an accountant and patient from Massachusetts.

A couple of years ago my primary care physician suggested that I have a colonoscopy at the age of 47. My father died from Hodgkin’s disease at 34 and my mom survived breast cancer in her 40’s. I suffer from irritable bowel syndrome so she suggested that I have my colon checked out just in case. She recommended a very experienced gastroenterologist at a major Boston hospital.

My insurance would not cover the procedure because I am younger than 50, so I called the hospital to investigate how much it would cost me to have the procedure. Their first answer was that they did not know because no one had ever called in with that question before. This is a hospital which probably does more than one thousand of these every year.

I was transferred to someone else who was more helpful. She said it would depend quite a bit on what they discovered while I was undergoing the colonoscopy, but gave me a range of $2,000 to $4,500. I asked if there would be other charges and she said that the physician screening could cost $770 or more.

I asked if there were other charges. She then mentioned that there would be a fee for an anesthesiologist, but they didn’t know how much that would be. I asked whether I should call that office, but they said that they use several different anesthesiologists and there is no way in advance for them to know which one will be there for the procedure. Finally, they mentioned that there may be several other charges as well. I asked for something in writing about the various charges, but she said they did not have anything like that.

That’s the point where I gave up. We were already potentially over $5,000 and it was going to take some time to figure out an estimate for the anesthesiologist. Also, I had no confidence that we had gotten to the bottom of all of the potential charges. I was not going to get an estimate before agreeing to do this procedure.

I liken this experience to hiring a general contractor for a recent major home improvement. I received three estimates from three different general contractors which included all of the costs including the electrician, masonry, disposal, painting, etc. Sometimes there are unexpected costs with construction, and sometimes there are unexpected costs with colonoscopies. However, the inability of our medical system to even identify all of the costs, or to even appreciate that this is an important element to making the decision, was emblematic to me of a much deeper problem.

I will celebrate my 50^th birthday in less than 2 months and will let the insurance company sort this all out while I focus on the procedure.

Cost-awareness anecdote: Cruel Shoes

The following story is from Dr. John Henning Schumann, a primary care doctor at the University of Chicago. He blogs @ http://glasshospital.com

A thirtysomething friend of mine, let's call her Sally, started running last year in an effort to get in better shape.

As often happens in these scenarios, Sally developed some foot pain. So she went to a "foot" doctor (I'm not sure whether she meant a podiatrist or an orthopedic surgeon specializing in feet).

Reasonably enough, the doctor ordered an x-ray of her foot. The official reading showed no fracture, but there was a "questionable" finding on the edge of one of the midfoot bones such that the doctor couldn't rule out some more insidious process. A stress fracture, perhaps? Those can be awful, and take a long time to heal.

So, again in reasonable fashion, the doctor ordered a CT scan of Sally's foot. This is the logical next step if a plain old x-ray is abnormal. Heck, a lot of the time, even when an x-ray is normal, we still order the CT scan looking for something that we can't see on the x-ray.

And though I said this was a reasonable choice, if you really think about it, was it so reasonable?

I mean, did Sally really need a $1000 test to see what was causing her foot pain? If you're Sally, you sure might think so. You want to know what the heck's wrong. You want to know why you're having pain when you run. You want to keep running. After all, as a primary care doctor, I LOVE it when a patient tells me that they're serious about exercise. Aside from not smoking, that's the best thing I can hear from a patient.

But Sally hadn't traumatized her foot. She hadn't dropped a bowling ball on it. She probably had an overuse syndrome. A repetitive stress injury. A running "tweak."

The x-ray showed that, for heaven's sake. We knew there was no broken bone. No smoking gun. [I told you, we hate smoking.]

So a week after sitting for the CT, Sally still didn't know the result of her scan. She called the doctor's office to no avail. She was put off by the staff, even told by a nurse she'd have to come in for an appointment to discuss the results with the doctor.

By this point, she's worried. "Is there something terrible that he's waiting to tell me?" she wondered. "Do I have foot cancer?"

Sally adjusts her schedule, dutifully shows up for the appointment, to hear the doctor tell her that her CT is normal. Did she really have to wait a week and have an office visit to find this out? That is one shoddy patient experience in my book.

Nevertheless, she reasonably asks the foot doctor what she should do about her pain.

Physical therapy? Low impact exercise (use an elliptical trainer, perhaps, or bicycling)?

She doesn't get much of a concrete answer.

She decides to buy some new shoes.

She goes to a local shoe store that caters to runners. Let's call it Fast Feet.

There, they measure her feet. No charge. Lo and behold, her feet have grown a whole size.

Sally was running with shoes that were too small! That was the source of her pain. No CT was needed. In fact, probably even an x-ray was unnecessary. And the $300 orthotics that she' been prescribed.

Now, this story shows how when a patient comes to see a doctor, we often go right to diagnostics. We want to get you an answer, after all. We're not shoe salesmen, for heaven's sake. We don't even have those thingie-dingies that measure feet. [Do foot doctors?]

Next time someone comes in complaining of foot pain, I'm going to ask them when they last had their feet measured.

Cost-awareness anecdote: A Medical Student's Dilemma

The following story is from Libertad Flores, a first year medical student at the Alpert Medical School of Brown University

I remember joking with Dad about how he'd outlive us all. He had gone vegetarian 10 years before I was born, never smoked, took vitamins, and asked for a designated driver after his annual Heineken at the neighbor's Christmas shin-dig. He flossed, wore a seat belt, and looked forward to annual physicals. If I tried leaving our Michigan house in the winter with more than 3 inches of skin exposed, he would follow me to the door yelling “It's no fun being sick!” We were always working class, but both my parents had union jobs with solid benefits and therefore we were covered by two health plans. Despite our attempts at persuasion, he refused to drop his coverage–the Rolls Royce of health plans, as we dubbed it–in favor of my mother's plan. “I don't want to worry about bills” he said, and only dug his heels in after retiring.

Nevertheless, on his 64th birthday my father had an endoscopy, after which the physician looked stricken. Later I saw images of the adenocarcinoma that spread like a hand around the top of his stomach and into his liver. He was supposed to have 3 months without treatment, but things were looking up after a few rounds of chemotherapy. He was tolerating the treatment well, and the spots on his liver shrank. Thank God he stuck to his guns about the insurance, I thought. It was one less thing to worry about.

Just after Christmas, my father caught a minor infection but was hospitalized for a week. Listening outside the curtain in the emergency room as he had a Foley inserted was a low point, but I did not know then about the insults left to come. He pulled through, but decided to stop chemotherapy the following month. Around March, Mom mentioned that collections notices had started coming to the house, and that dad had tried to hide them. I wanted to help, but she had no idea what the bills were for, and couldn't understand how there could be a bill when we had two good health plans. Mostly what I gleaned was that she was scared. She was trying to get him to his appointments on time, make sure he took his medications, feed him and generally cheer him on. I remember ending these calls with a pit in my stomach about where this could lead, but we had to prioritize. One crisis at a time, my mother would say.

The woman unflinchingly emptied buckets, changed diapers and slept in a folding chair next to my father toward the end, but she was not built for the business aspects of illness. So in the week following Dad's death I called the insurances, the hospital, and the collectors to let straighten out the mess. Despite having wading through those bills, I still could not say what his treatments cost. As to what they were worth, there are still no words.

I used to wonder what went wrong, or what I would advise others to do to avoid this kind of stress, short of never getting sick. I have only gratitude for the doctors with regard to his treatment, and for the manufacturers of the treatments that extended his life. But how exactly do you put a price on these that still give allows patients access? Quality costs, and I do not envy the people charged with that task. Should health care providers routinely ask patients about their financial concerns as it relates to care? In our case, when I think of my sick father hiding away bills, I don't think it would have hurt. I am left with hope, but no answers for the millions without coverage. What should they do? When I am a physician, what can I do?

Cost-awareness anecdote: a $1000 coding error

The following story is from Michaela Dinan, a PhD student in health policy and management at the University of North Carolina

As a graduate student in the health field I often get phone calls from various family members and friends asking what I happen to know about different drugs, procedures, and devices. I was having one such conversation with my younger sister last spring. She had just completed her undergraduate education, started a new job, and was very proudly financially self-sufficient for the first time.

We were talking about birth control. Her yearly exam was coming up and she was considering the therapeutic and cost efficacy of different forms of contraceptive. I had recently attended a class where the intrauterine device had been discussed as a cheap, effective form of contraceptive that is underutilized in the United States. A few strokes of the keyboard and my sister and I were able to find that with no insurance, the hormonal IUD costs $843.60. We quickly calculated that at 20 bucks a month for the pill, after 5 years, the IUD would end up being significantly cheaper - even before taking her insurance in to account.

A few weeks later my sister excitedly told me that she had discussed the IUD with her doctor who had informed her that it would only cost around $200 with her type of insurance. She had already scheduled her appointment to have it placed.

While the procedure itself went off without a hitch, the next phone call I received was of a decidedly different tone. She had just received her bill in the mail – a bill for $1100!

“How is it possible that it cost so much more than they said it would?”

“I don’t know!"

“Did you call the insurance company?”

“Yes. They covered some of it, but the $1100 left is for me to pay.”

My sister was frantic. As a new graduate just entering the workforce, she was living pay check to pay check. There was no way she could come up with an extra $900 at the drop of a hat.
But something didn’t add up. How could this device and the procedure cost so much more than all the information had said it would? “Let me talk to them for you,” I said.

After weeks of unreturned phone calls and department transfers, I was finally able to secure a billing inquiry. The inquiry itself took months. By the end of the process my sister was fending off collection calls from the hospital trying to explain that we were disputing the charge. In the end it all came down to a coding error on the part of the physician. The visit had been erroneously coded as an inpatient procedure. The amount of the correct bill? One hundred and fifty dollars.

While it would be easy to chalk this up as a happy ending, I think the moral here is a bit different. My sister did everything right. She researched the procedure on her own, discussed it with her doctor, and called her insurance company when the bill was different than she expected. I am not sure many of us could claim to be that involved in our own healthcare and yet had circumstances been even slightly different, she would have ended up paying $900 more than she was supposed to.

I, like most Americans, didn’t even know what medical coding was or how it worked until I started working in the field. Yet when I go to the grocery store, or buy plane tickets online, I know exactly how much it is going to cost me before the sale is final. It seems to me that if providers, patients, and payers all had access to the same cost information up front, it would drastically improve communication, reduce the potential to overlook errors, and better allow patients to play a more decisive role in their own health care.

Cost-awareness Anecdote: Not Colon Cancer

The following story is from Dr. Davis Liu, a primary care doctor from California and author of "Stay Healthy, Live Longer, Spend Wisely: Making Intelligent Choices in America's Healthcare System"

My mother's oncologist ordered the blood test, carcinoembryonic antigen (CEA), to check for the recurrence of colon cancer. The good news was that there was no evidence of recurrence. The bad news was that she didn’t have colon cancer.

She had breast cancer.

Though she was feeling better, the chemotherapy and radiation had taken its toll. For the past couple of months, she had experienced constant nausea and vomiting. During and after treatment, her hands and feet felt like they were on fire. Many times she wanted to give up and quit. Yet she persevered and felt emotionally stronger after the ordeal. She started to feel like herself again. Life began to have some normalcy. Until an insurance bill appeared asking for hundreds of dollars.

Apparently over the past year, her oncologist had routinely ordered the CEA test multiple times as part of her cancer follow-up. When she called to contest the charge, the insurer told her to talk to her doctor. She didn’t know this test was unnecessary until the bill. And until she called me, her son, a primary care doctor.

She asked her oncologist about the repeated blood tests. He simply shrugged. No apologies. No explanation. No acknowledgement of the error. Didn’t he get the lab results of the CEA? Shouldn’t he have been aware that the test was not relevant for her care?

It didn’t matter. In the end, she paid the hundreds of dollars. There was no other choice.
Perhaps the oncologist’s response should not have been surprising. His office was set up so that patients always met with the phlebotomist first for blood work before ever seeing their doctor. As a result, he might never know that a colon cancer test had been repeatedly ordered for a breast cancer patient. His error now would be completely borne financially by the patient. There would be no recourse or appeal.

But perhaps he was an outlier in her treatment of breast cancer.

Although she regularly saw her oncologist, my mother also trusted her surgeon for her cancer care. When she was first diagnosed with breast cancer, a young and enthusiastic solo practitioner successfully performed her lumpectomy. Moreover, her surgeon continued to see her for routine post-operative check-ups and additional follow-ups every few months for the next several years. Her oncologist did exactly the same thing.

Listening to her doctors’ advice, my mother took time out of her day, paid the increasingly expensive co-pays, and went to the oncologist and the surgeon. Her life was busy enough running a home business in addition to her part-time job. She wondered if it was necessary to go to both doctors.

My wife wondered exactly the same thing. As an oncologist, her experience has been that surgeons are happy to hand off patients when the surgery and post-operative care are completed. She could not think of a compelling medical reason why the surgeon would also need to see my mother on a regular basis. In general, oncologists oversee the chemotherapy, radiation treatment, and hormonal therapy for breast cancer, not surgeons.

Despite our concerns, my mother continued to see her surgeon for many more months. She felt guilty when the surgeon’s office kept calling her when she missed follow-up appointments.
She finally stopping going after the surgeon seemed too busy to see her. The few minutes she spent with the surgeon was no longer worth the drive, time off work, or cost of care.
Frankly, I never believed my mother received any medical benefits from these additional visits. She just received an extra bill to pay.

As the only doctor in my family, I viewed my mother’s experience with increasing concern. During her breast cancer treatment, my ill mother had only one focus – getting better.
Like the vast majority of patients, she trusted that her doctors would make the right choices both medically and now increasingly financially. She did not want to be the expert on determining which blood tests were appropriate or the number of post-operative follow-up appointments needed for her cancer treatment. Yet it is apparent that this is the new role patients are asked to play.

It is simply wrong to ask them to do our job. As doctors we are the experts on determining the value of treatments and interventions truly worth our patients’ time and money. Our training and social responsibility must reflect that we are not only healers but also thoughtful stewards of our patients’ financial resources. It’s a new mindset we must accept.