As she adjusts her sunglasses, Mary squints to protect her sensitive eyes from the sun. Four years ago when lymphoma threatened her life, doctors gave her a 5 percent chance of survival.
“I really should be dead right now,” she states casually. A bone marrow transplant gave this patient a new lease on life, allowing for the treasured opportunity to mother her 8-year-old son. The transplant has been successful, but her body is riddled with graft versus host (GVH) disease, a reaction that has attacked her skin and eyes, resulting in pain and disfigurement.
Mary has survived the grueling experience with not only her life, but also an intimate knowledge of the medical system. Without any formal medical training, she has learned to ask the right questions, be direct with her caregivers, and persistent when she does not understand.
“My favorite thing to hear from a doctor is ‘I don’t know.’” This statement signals a humility that is necessary to entertain all possibilities regarding her rare disease and treatment, and an honesty that allows for a deeper trust of her physician. However, despite all she has been through navigating the treacherous waters of cancer treatment and GVH disease, the one obstacle she battles routinely is determining what charges are submitted to her medical insurance company.
“I used to get an itemized receipt from the hospital, but now it is more difficult,” Mary says.
She recalls that when she was originally diagnosed in 2011, it used to be common practice to receive an itemized bill, but this is no longer the case; she now has to make a specific request. She has gotten into the habit of reviewing charges following visits, and finds on numerous occasions a bill for tests and lab work that were never performed. Mary believes these billing mistakes are “good faith errors,” a result of providers and staff being overwhelmed by the volume of patients and number of tests. Without a medical background, patients may find these charges difficult to recognize, and the prevailing attitude by billing departments seems to be, “Why do you care? Your insurance company pays for it, not you.” (This was an actual statement made by a billing representative to another friend of mine when she called inquiring about a charge.)
“It can be a full-time job to review and check all these items,” Mary observes. “The ones who most need help are the elderly, those physically and mentally challenged for whatever reason or folks who are simply unaware that these errors take place. Even if each is ‘small’ they can add up over a period of many years with chronic illnesses of all types.”
While talking to Mary, I was reminded of my own experience following a steroid injection of my spine. Not a fan of the sedating effects of benzodiazepines, I requested a face cloth to bite on and only a local anesthetic. I was shocked when I saw a charge for “anesthesia” on an itemized list of submitted charges from the surgical center provided to me by my insurance company. Would a patient not trained in the medical field know the difference between a local anesthetic and anesthesia? Probably not.
I have no idea how prevalent the practice of erroneous or fraudulent billing is, but my guess is that it is the result of providers and hospital systems adapting to a climate of ever decreasing reimbursements and inexplicable denials for payment by insurance companies for valid services. It is a simple yet brilliant concept of survival of the fittest that Darwin, I’m sure, would never have dreamed would involve medical billing. As long as this battle continues, costs will rise, ethics will crumble, and patients will suffer. Medical bills are the leading cause of personal bankruptcy in the U.S. And patients don’t even know or understand what most of these medical charges are.
Keeping consumers out of the loop regarding medical billing allows the system to run unchecked. I’m no economist, but I would guess that any process that allows for payments to be made by a third party without any involvement by the consumer is breeding ground for fraud. Similarly, without a robust insurance market to shop from, consumers are unable to use their spending power to lower costs by choosing options that are more economically feasible.
Just as lawyers provide counsel to clients regarding legal matters that, in most cases, are too complex for most non-lawyers to understand, perhaps the time has come for patients to seek medical counsel to guide them through the medical system. Doctors, inundated with the increasing burden of endless documentation to get paid, have less and less time to actually talk to patients.
Private medical advisers could advocate for the patient by explaining their care, assuring proper charges were submitted, and fighting inappropriate denials by insurance companies. Many would argue that patients would not want to take on this increased financial cost; but how many defendants would want to show up to court without a lawyer? It is a new concept that has yet to take hold, but as the Darwinian battle continues, the situation may get bad enough that patients recognize the need for help.
Mary is back in the hospital, and I pray she has a speedy recovery. When she is discharged, among her list of challenges — including recuperation, mothering and trying to live a normal life — will be the colossal task of wading through the litany of charges on her specially requested itemized bill.
Aida Cerundolo is an emergency physician.
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