Not Colon Cancer

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 acknowledgment 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.

Davis Liu, M.D., is a practicing board-certified family physician and author of the book, Stay Healthy, Live Longer, Spend Wisely – Making Intelligent Choices in America’s Healthcare System. He graduated summa cum laude and Phi Beta Kappa from the Wharton School of Business at the University of Pennsylvania. He received his medical degree from the University of Connecticut School of Medicine. Follow him at his blog, Saving Money and Surviving the Healthcare Crisis or on Twitter, davisliumd.

On Labor Day Costs of Care asked doctors and patients to send us anecdotes that illustrate the importance of cost-awareness in medicine, as part of a $1000 essay contest aiming to shine a national spotlight on a big problem: doctors and patients have to make decisions in a vacuum, without any information on how those decisions impact what patients pay for care.  Two months later we received 115 submissions from all over the country – New York to California, Texas to North Dakota, Alaska to Oklahoma. We feel these stories are poignant because they put a face on some of the known shortcomings of our system, but also because they unveil how commonplace and pervasive these types of stories are. According to essay contest judge Dr. Atul Gawande, a surgeon and staff writer at the New Yorker, “These [stories] are powerful just for the sheer volume of unrecognized misery alone.”

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22 replies »

  1. CEA is NOT indicated. It’s very handy to know the standard of care in cancer treatment when your wife is a practicing oncologist!
    I believe that what failed here wasn’t standardization (it is clear that the order set was standardized that my mom received CEA testing regularly and inappropriately) but rather the absence of a feedback loop and accountability to ensure it was the right thing to do. Aviation and other organizations that provide highly reliable processes do the latter as well as the former.
    Will the oncologist change the system or do more of the same? It is also unclear how many other patients were also impacted and if they were aware of the error or simply shrugged and paid the bill. If so, then that is the real tragedy.
    Fortunately, mom wasn’t ill enough to require case managers which is likely the majority of patients. So again, who will look out for this group?
    Thanks for the thoughtful comments and feedback everyone!

    Davis Liu, MD
    Author of Stay Healthy, Live Longer, Spend Wisely: Making Intelligent Choices in America’s Healthcare System
    (available in hardcover, Kindle, and iPad / iBooks)
    Website: http://www.davisliumd.com
    Blog: http://www.davisliumd.blogspot.com
    Twitter: davisliumd

  2. The original post is unclear. The author states that his mother got an insurance bill. I would think the bill came either from the lab or the oncologist. It’s the ethical responsibility of the doctor to either clean up the mess or eat the charges.

  3. This is not my area of specialty, but I assume we all know the CEA is not indicated? There are some references indicating it may be useful in monitoring patients with metastatic breast cancer, which I assume does not include the author’s mother. So it has no utility in non-metastatic disease?
    Otherwise, I agree with everyone’s observations; the doc should eat this one if s/he is not willing to modify his/her system for ordering the test.

  4. “I would rather aim for personalized medicine, where the physician would see that this test is not appropriate for this patient.” I would respectfully ask you to consider, would you ever get onto an airliner again if the FAA and appropriate entities left aviation / flight plans / maintenance manuals / air traffic control to ‘personalized aviation’ without standardization, regulation, and information-sharing?

  5. It’s tragic that when patients are going through the trauma of cancer they have the added stress of worrying whether a trusted physician is taking advantage of them. This is a good lesson for all of us in this current healthcare climate.

  6. A 2nd doctor advice is very helpful. Unfortunately it places burden on patient to figure out who is right. Someone gone into psychology into why patients believe in doctors so much and not have their own insticts?

  7. “the doctors, to develop a standardized approach to medical practice”
    Isn’t standardized medicine what caused the problem here? This oncologist obviously orders routine CEAs whether they’re indicated or not. I would rather aim for personalized medicine, where the physician would see that this test is not appropriate for this patient.

  8. You bring up excellent points – but I would emphasize it is our COLLECTIVE duty as physicians, as a profession – not individuals. The practice of medicine in the current information era is literally impossible: if any physician claims (s)he never cuts corners, it is a lie or a delusion. But it is equally unrealistic to place the responsibility on patients to keep up with everything. Assuming the fact that medicine is a complex system, the ONLY possible approach is standardization, such as Atul Gawande elegantly shows in ‘Checklist Manifesto’. Let us be about this sacred business immediately – no more time or wasted effort placing blame. It’s up to us, the doctors, to develop a standardized approach to medical practice – just as the commercial aviation industry has, and lands thousands of planes every day with virtually no fatal errors!

  9. Many insurers do provide case managers for severe chronic illnesses and cancers. I’m surprised it hasn’t come up yet, since I would think there are thousands of case managers nationwide doing just the sort of thing Dr. Liu’s mother lacked.

  10. “…my family felt like we needed some type of patient advocate…”
    This is the missing link. Every family in the country has a story like this, or they just never discovered it.
    No meaningful cost controls will happen without this role. The PCP’s have apparently decided it is not them.
    Meanwhile, the liberal social engineers, in a typical stroke of genius, write 10,000 word articles explaining why an unelected Federal bureaucracy is a perfect patient advocate for 300 million patients.
    It will suck, but we (the health profession) will deserve it. In the same way the Russian people deserved the apparatchniks.

  11. Can a phlebotomist order lab tests with out a doctor? That sounds odd to me. Seems there are too many “standing orders” and they ought to be reviewed by the doctor. From my perspective the oncologist is responsible for his/her errors in ordering lab tests.

  12. “medical oncologists were to be reimbursed for providing evaluation and management services, making referrals for diagnostic testing, radiaiton therapy, surgery and other procedures as necessary, and offer any other support needed to reduce patient morbidity and extend patient survival”
    I.e., the work that none of the rest of us get paid for, either. Color me not sympathetic.

  13. “Curiously, have any physician readers voluntarily paid a patient’s cost for a test that was performed by mistake?”
    Yes, I have. If the doc asks the lab to bill herself instead of the patient, she’ll pay a very small fraction of what the patient would have. It’s the only ethical thing to do.
    I think someone needs to come down a little harder on the oncologist here. And I also would be very interested to learn if the oncologist uses an EMR.

  14. Under the new Medicare modernization act of 2003, medical oncologists were to be reimbursed for providing evaluation and management services, making referrals for diagnostic testing, radiaiton therapy, surgery and other procedures as necessary, and offer any other support needed to reduce patient morbidity and extend patient survival. In other words, medical oncologists were supposed to be taken out of the retail pharmacy business and allowed to be doctors again and “managers” of cancer patients. The fact that medical oncologists received no reimbursement for providing this service had been the principal barrier of medical oncologists doing this service. However, as Medicare tried to do this, private insurance plans may not go along with this management reimbursement protocol.

  15. Your post is surprisingly familiar. My mother survived colon cancer 10 years ago and saw many doctors over the course of her treatment. Not long after her initial diagnosis my family felt like we needed some type of patient advocate: someone who understood what all the doctors were doing; someone who translated the medical terminology so we understood; someone who explained tests and timing of treatments; someone who knew how to ask the right questions. A person with this job would catch the unnecessary tests that your mother ended up paying for. Her primary care physician was great but couldn’t fill this role.
    If can hire someone to help me navigate the myriad of financial options as I plan for retirement, why can’t I hire someone to help me navigate the medical system when I am sick?

  16. Yes, for Medicare the physician is on the hook for the cost of a test that was not linked to a (published) “approved” diagnoses, unless a waiver is signed.
    However, approved diagnoses (in the eyes of the insurance company) are not published for non-Medicare insurers. Many physicians will use waivers even in non-Medicare situations if they suspect the possibility of nonpayment by the insurance company. If not prevented by contract, patients will often be billed for the noncovered tests.
    If the individual disputes the appropriateness of a test performed, it unfortunately becomes his or her burden to discuss with the physician.
    On the other hand, if the physician recognizes that the test was inappropriate, such as an error, would it not most appropriately be the responsibility of the physician to rectify?
    Curiously, have any physician readers voluntarily paid a patient’s cost for a test that was performed by mistake? Or further still, paid the pharmacy cost of a patient’s medication that was prescribed incorrectly?

  17. I am not going to defend the surgeon, but one has to consider that our medical culture strongly encourages test ordering ( usually covered by 3rd party payors) – a test duplicated is rarely a problem, while the test that was of uncertain indication A PRIORI which was not done – but potentially helpful – is a problem (not to mention potential legal issues). And when I say culture, it includea patients and physicians alike. From residency, I remember many rounds with attendings during which some very unlikely to be beneficial invetstigations that were suggested by trainees were tolerated or encouraged … but not ordering tests that the attending found helpful was always treated as a deficiency. Conclusion: just err on the side of ordering more.

  18. You state your mother is still working, so she’s probably not on Medicare?
    With almost all non-Medicare insurance, the dx has to be appropriate for the lab test, or payment is denied. The patient would not be responsible for the lab charges. There may be a wrong dx code floating around somewhere in your mother’s medical record that could be corrected. If she’s on Medicare, unless she signed a waiver, she also would not be responsible for the charges.
    In any case, if the oncologist ordered the incorrect test (either before or after the office visit), it is HER responsibility to clean up this mess, and pay for the tests if necessary.