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Living With Cancer

The Strategic Lies of Oncologists

Is it ethical to break cost-controlling rules for a patient’s benefit?

Credit...Eleni Kalorkoti

“We’ll have to invent symptoms,” the doctor said. Since this physician was a paragon of integrity, the patient gasped. With what words could she thank the doctor for such a breach of insurance rules?

Many have fulminated against oncologists who lie to patients about their prognoses, but sometimes cancer doctors lie for or with patients to improve our chances of survival.

Here’s the back story in this case. The patient, a woman in her early 50s, was given a diagnosis of endometrial cancer. After three infusions of chemo, she was supposed to start radiation, but imaging for it detected tumor growth. In other words, her disease was so malevolent that malignancy progressed during treatment. Yet physicians successfully altered the regimen, which she weathered. While some women with gynecologic cancer can use the CA125 blood test as a marker for recurrence, for others it does not work at all; they need scans. This patient is in that category, so she and her oncologist agreed to rely on a CT scan every nine months.

However, the insurance company refused to pre-certify the patient’s scan on the grounds that she had no symptoms of recurrence. Both she and her oncologist were baffled. Three specialists had warned that her cancer would probably return. Umpteen forms, filled out and submitted, failed to change the verdict; the oncologist fumed at insurance representatives on the phone, but to no avail. The doctor then coached my friend to fabricate cramping or bloating — symptoms that the insurance company might see as justification for the scan.

“A shell game,” she tells me, suspecting that her doctor must hate the lie as much as she does: “How humiliating for this consummate professional.”

My friend’s account reminds me of a youthful colleague with a family history of lethal colon cancer. His doctor made up blood in his stool to obtain insurance coverage for a colonoscopy. Precancerous polyps, found and removed, justified future surveillance.

What does the scant literature on the phenomenon of falsification tell us? A 1999 study, “Lying for Patients: Physician Deception of Third-Party Payers,” argues that it has characterized medicine, inside and outside cancer care, for some time. The authors document doctors’ willingness to dissemble in areas ranging from coronary bypass surgery to mammography screening.

“Many physicians sanction the use of deception to secure third-party payers’ approval of medically indicated care,” they wrote.

Physician subterfuge, the article concludes, reflects friction between “the traditional ethics of patient advocacy and the new ethic of cost control that restricts patient and physician choice in the use of limited resources.”

Is it ethical to break cost-controlling rules for a patient’s benefit? At a fork in the road, the doctor must make a decision worthy of the Greek heroine Antigone. Should the patient’s best interest be paramount or the requirements of the system? Distress over the conflict between lawbreaking patient advocacy and law-abiding cost control intensifies with a life-threatening disease.

Dr. Rick Boulay, a gynecologic oncologist, describes the “peer-to-peer” phone consultation that constitutes the final step in the process of trying to get services covered for patients with metastatic disease. He recounts prescribing and defending a (more expensive) PET scan because an earlier CT had produced a false negative. Denial of coverage leads Dr. Boulay to conclude that his patient “may pay with her life for the insurance doc’s inability to look beyond policy.”

Not wanting patients to pay with their lives, how many physicians break or bend health care regulations in order to gain access to reimbursement and therefore to care? For without coverage of pricey drugs or procedures, most patients cannot afford them.

“You will never find it publicly discussed, but it happens; in unique situations, the rules need to be tweaked,” one oncologist-acquaintance confided on the condition of anonymity (because of the fines and sentences associated with insurance fraud). While contending with the mounting burden of electronic medical billing, physicians may encounter problems with the financial gatekeepers of insurance companies. Denials of coverage are made by insurance doctors who may not be specialists or, in some circumstances, vigilant adjudicators.

Earlier this year the former medical director of Aetna for Southern California admitted under oath that he did not review patients’ medical records before approving or denying appeals for insurance coverage. Renata Louwers, the widow of a bladder cancer patient, was especially outraged at this revelation because of the hours she spent on hold as insurers refused to pay for an off-label drug that shrank her husband’s cancer; the couple paid for it themselves until they won an appeal.

Insurers use the periodically updated National Comprehensive Cancer Network Guidelines to determine coverage for a specific regimen for a specific type of cancer. “If the prescribing doctor chooses to go outside” the list, my oncologist-informant explained, “the plan is often delayed or denied.” The network has not yet established detailed guidelines for some of the newest and most expensive targeted therapies. Delays in cancer treatment can be as deadly as denials.

Skyrocketing health care expenses certainly require regulations, most of us realize. And unfortunately oncologists have been known to put money in their own pockets by over-testing and over-treating in practices that do not help patients but could bankrupt our society.

The solution? The oncologist I spoke with suggested that partnerships between clinical care providers and insurance providers could prioritize patients’ well-being while keeping costs as low as possible. The authors of “Lying for Patients” argue that “Alternatives to deception include broadening existing appeal processes on behalf of individuals and political advocacy for health care reform.”

That professionals in the arduous field of oncology feel tempted to lie — in order to care for their patients — must take a psychological toll. Lying may finesse the system for the good of one, but it does not change it for the good of all.

The pressure on the system will only increase as detection tools generate predictions of cancer and genetic analyses produce personalized treatment plans. To facilitate prevention and to obtain proper care, insurance protocols must be made more flexible. Oncologists need to be free — without worrying that they will harm their patients — to speak truth to power.

Susan Gubar, who has been dealing with ovarian cancer since 2008, is distinguished emerita professor of English at Indiana University.

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