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.