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.

Essay Contest Winners Announced!

On behalf of the Costs of Care team, Governor Michael Dukakis, Dr. Tim Johnson, Secretary Michael Leavitt, Dr. Atul Gawande, and Dean Jeffrey Flier, we are excited to announce the $1000 prize winners of the 2010 Costs of Care contest.

Tarcia Edmunds-Jehu, a nurse midwife from Boston, MA, beautifully captures how the current health system leaves some patients struggling desperately to pay bills - and providers feeling terrible that their well-meaning care is to blame.

Brad Wright, a graduate student from Durham, NC, articulately describes his experience as a savvy patient who did everything possible to avoid expensive and unnecessary care, but got saddled with a large bill anyway.

All of the finalist submissions have been published, including the stories of hardworking, responsible Americans falling through the cracks, getting a $11,000 bill for indigestion, a $10,000 bill for pre-approved surgery, a $1000 bill for birth control.

And the stories don't stop there. Starting January 1st, we will post a new incredible story here every week. Our hope is to shine a national spotlight on the lack of price transparency in our health care system, and illustrate importance of cost-awareness in medical decision-making.

Happy holidays and see you in the new year!

Cost-awareness anecdote: Between the Cracks (contest finalist)

The following story is from Kelly Cheramy, the wife of a man with a chronic illness from McFarland, WI

Between the cracks is a frightening place to be.

During the course of trying to improve our family’s financial stability, my husband and I were blind-sided by one hidden detail: We’d face $10,000 in costs to continue my husband’s serious medical treatment because we found ourselves unexpectedly without coverage for 30 days.

This was money we simply did not have. We had been prepared to foot the full bill for good health insurance, but that wasn’t even an option, thanks to the circumstances of our career transitions and my husband’s health.

I was leaving my job of 10 years to begin a satisfying new position that came with excellent health care coverage. It was a beneficial move that would offset my husband’s impending loss of insurance as his employer downsized and prepared to go out of business. We knew the end result, but we didn’t know the timing. It just so happened that his coverage ended the same month that I began my new job, leaving a gap of one month before my new coverage would begin.

With this routine employment-benefits formality before us, we knew we’d have to purchase coverage. We had hoped to buy a Cadillac COBRA plan, given the circumstances that require very expensive care. But we learned that an out-of-business employer is not obligated to offer COBRA, and our plan to continue the same level of coverage at our expense was not available.

I then checked with my previous employer, whom I had left just two weeks earlier, to weigh my options. I had none, because, at the time of my resignation, I hadn’t been enrolled in that employer’s plan. At my new job, I had already initiated my flex plan withholding so I was too late to set aside pre-tax dollars to help ease the burden.

Because of my husband’s serious pre-existing condition, we were almost certain we wouldn’t qualify for insurance anywhere, and if we did, the price would likely be out of this world. With billing statements in hand, we began to panic about the outrageous price of care and the irony of trying to improve our lives through better jobs—a situation that led to our falling through a nearly invisible crack in the health care system.

The decisions before us were scary: suspend treatment for one month, potentially jeopardizing my husband’s health and setting us back even further in the long run, or find a way to pay $10,000 for his medications, hormone injections, lab work and doctor visits. We chose the latter.

Luckily, our doctor knew of some possibilities that might help. One was to enroll in a medical study that would cover all expenses as part of the research. Unfortunately, an additional health condition made my husband ineligible to participate. The doctor also told us about our insurance company’s conversion plan, which guarantees coverage (albeit less of it, with no drug benefit). The company charges a higher premium in exchange for the forfeiture of underwriting. Though the coverage was greatly reduced, we decided to purchase this nominal safety net for my husband while I took the chance on my own health by not buying coverage for that one month. (As luck would have it, I then contracted pneumonia. A purposeful delay in diagnosis and treatment happened just as I was beginning my employer-provided coverage.)

Finally, the doctor knew of a pharmaceutical company’s program that provides free medication to those who cannot afford the treatment. We applied, slogged through the red tape, waited with wringing hands, and received word that we were accepted. That was a godsend. Today, my husband’s health is nearly perfect and we are back on track to providing everything our family needs, including health care coverage.

When we slipped through the cracks in the health care system, we were emotionally taxed at a time when we could scarcely handle any more stress in our lives. Of course, we’re grateful for the excellent care and the help we had to patch together a plan of action we could afford, but we were taken by complete surprise when we viewed the costs from deep inside the crack.

Cost-awareness anecdote: Sticker Shock (contest finalist)

The following story is from Dr. Grayson Wheatley, a cardiovascular surgeon from Phoenix, AZ

It was supposed to be a routine office visit for my patient. Unexpectedly, it turned into a real-world health economics lesson for me, the treating physician. The old adage “listen to your patients; they will always give you the answer” became exceedingly true in this case, even when it dealt with an issue beyond a medical diagnosis, such as lack of transparency regarding insurance coverage for medical procedures.

My patient had recently undergone an interventional procedure to treat severe peripheral vascular disease in order to improve his leg circulation. Usually, patients like him don’t seek treatment for vascular insufficiency until the discomfort associated with activity, or claudication, is severe enough to interfere with their regular rounds of golf. That is the real motivator for these patients. The procedure was a success and a few days following the procedure he was back to his normal activities and was pleased that his leg no longer bothered him as he motored around the golf course.

My patient calmly waited until after I checked his pulses, reviewed his medications and gave him a plan for follow-up before he expressed his real concern, and it certainly wasn’t about whether he could now get an extra 20 yards on his tee shot as a result of the new strength in his leg. Despite my office obtaining all the necessary private insurance pre-authorizations for the interventional procedure, he still had received a bill for approximately $10,000 related to out-of-network charges. I was baffled and my patient was disgruntled about this mix-up. After reviewing with him in the examination room the numerous sheets of paper he had received from his insurance company, it became clear what had happened.

A magical alignment of stars needs to occur for an elective procedure to be pre-approved. Emergency services are covered through a separate and more straightforward mechanism. First, the provider, or surgeon in this case, needs to be within the patient’s insurance network. Appropriate professional credentialing and outcome data are submitted to the insurance company, and if acceptable, the provider can participate in the company’s insurance plan. This tedious process needs to be repeated for every insurance plan in which the physician wants to participate. Second, appropriate medical record documentation needs to be submitted to the insurance company demonstrating medical necessity for the procedure. Third, the intended hospital where the procedure is being performed needs to be in-network, which is completely independent of the provider’s status.

Pre-authorizations in this patient’s case were obtained for both the surgeon’s fee and hospital charges. The particular anesthesiologist utilized for this patient’s procedure – a member of the medical team for which insurance companies don’t require pre-authorization – was out-of-network. It is not customary to obtain pre-authorization for anesthesiologists since almost always the anesthesiologist is in the same network as the physician and hospital. We assume, incorrectly, that if an anesthesiologist is working in an in-network hospital and with an in-network surgeon, that they also have in-network status.

The challenge in this process is the lack of transparency surrounding patient choice regarding anesthesiologist assignment, which is often made by the operating room staff moments before the procedure. Despite the anesthesiologist meeting the patient in the holding area before the procedure, no one informed the patient about his upcoming out-of-network charge related to anesthesia services or gave the patient an option to choose another anesthesiologist who was within his insurance’s network.

Fortunately, the out-of-network anesthesiologist worked with my patient to drastically reduce the cost of his services and they agreed upon a much more reasonable charge and associated payment plan. Subsequently, my office has modified the process to ensure that the anesthesiologist assigned to a patient’s procedure is pre-authorized.

This patient’s case was an eye-opening experience for me and helped me better understand the complex maze of healthcare reimbursement. It also enabled me to see things more clearly from my patient’s perspective. I am thankful that this patient took the time to speak-up and share his financial situation with me. How many other patients have I operated on were put in this situation and suffered financially in silence? I have always prided myself on making sure my patients have a thorough understanding of their disease and upcoming procedure. Now, I take the time to make sure they also have a clear understanding of the reimbursement process. As a physician, it is not enough to relieve the physical pain of a medical problem, it is also our responsibility to help patients avoid preventable financial jeopardy.

Cost-awareness anecdote: $978 American Dollars (contest finalist)

The following story is from Jessa Hartford, a social worker and substitute teacher from Sacramento, CA

On 4/29/10 I received a Mirena IUD. I thought about this a lot; I read forums and articles on the device and its side-effects. I decided that because I already have a beautiful son who is 2 years old with my wonderful boyfriend of 7 years and we do not need any more children at this point in our lives, that it would be a good idea. You see, we both have been unemployed for a little over a year now. And while on Unemployment we made too much to receive Medi-Cal for any members of our family. So, while on Unemployment I was paying about $300/month out-of-pocket in premiums for medical insurance for my son and myself. (My boyfriend thinks his body can heal itself.) Anyway, after paying $75 for the visit and only being in the appointment for about 30 minutes, and another $75 for a mandated follow-up appointment, I received a bill on 8/18/10 for $978. (That is 978 American dollars, just to clarify.)

As I stated, while I got this device I was paying out-of-pocket for my insurance premiums because I could not be approved for Medi-Cal. A couple months after getting the IUD both of our Unemployment checks stopped coming. We had no income. Zero dollars a month coming into our home. So I instantly went down to the DHA and applied for pretty much anything I could. I started receiving Medi-Cal for all 3 of us. (This was all before I got the bill, or knew how much it was going to be.) When I went to Kaiser’s Customer Relations Department they informed me that Medi-Cal would take care of whatever cost the IUD would be, but now that I have gotten this bill and spoken to them again, they are saying that they were mistaken when they told me that because I was not receiving Medi-Cal during the time I got the IUD.

After receiving the bill I decided I would just return it for a full-refund. Apparently there is a no-refund policy for IUD’s, but they did not state this at any point during the appointment or have any postings on the walls. I even asked if I could possibly return the IUD for some sort of hospital-credit or gift card maybe for a surgery later in life, but they would just not work with me.

In all seriousness, I do not know how I am going to pay for this bill. My boyfriend and I are now getting Unemployment checks again, which you would think would be a good thing. But, this means that when we have to report how much money we got in the last quarter, in the next week or so, I am fairly certain that our Medi-Cal will be discontinued, since we will again be making too much. That means that I will be stuck once again, with out-of-pocket monthly medical insurance premiums, on top of this $978 bill.

I appreciate any help in this matter, even if it’s just information about how I can get help paying for this. I am trying to find work substitute teaching, and am really just trying to make it work for my family. We thought we were being responsible adults and citizens by looking at our place in life and deciding that adding another number to our household would not be good idea, but this is the cost (quite literally) of making that decision. You would think the government would want to help keep the Unemployed from pro-creating – I’m just saying.