Narrative Medicine

Narrative Medicine Monday: Bill of the Month

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NPR’s recent “Bill of the Month” highlighted a Montana man’s kidney dialysis that landed him with a bill of half a million dollars. The story describes how Sovereign Valentine, a 50-year-old personal trainer, discovered he was in kidney failure and in emergent need of dialysis. After discharge from the hospital, he and his physician wife returned to their small town in Montana and were told he’d need dialysis three times a week, with two options for treatment centers about 70 miles from their rural home.

They chose a center in Missoula, but soon after the outpatient treatments started, they were contacted by “an insurance case manager…warning them that since Fresenius was out of network, they could be required to pay whatever the insurer didn’t cover. The manager added that there were no in-network dialysis clinics in Montana, according to [his wife’s] handwritten notes from the conversation.”

Valentine’s physician wife attempted to get a quote on how much the dialysis might cost, but was unable to get a specific, or even rough, estimate. The NPR story highlights a law from 1973 that “allows all patients with end-stage renal disease like Sov to join Medicare, even if they’re younger than 65 — but only after a 90-day waiting period. During that time, patients are extremely vulnerable, medically and financially.” The outpatient dialysis center billed them $524,600.17. The NPR story notes that because of the law, there is “an incentive to treat as many privately insured patients as possible and to charge as much as they can before dialysis patients enroll in Medicare.”

Part of what is so disconcerting (and relatable for me personally) about this particular patient’s situation is that his wife is a physician, a person who would presumably have an advantage in navigating the system. She “knew it was important to find an in-network provider of dialysis.” Even with her extensive practical knowledge, she found herself and her loved one in an untenable situation.

Eventually, the patient’s wife contacted the state insurance commissioner and learned that there actually was an in-network dialysis clinic that had not turned up in other searches. Through this experience, Valentine discovered new insight into her patients’ challenges: “It’s very, very frustrating to be a patient, and it’s very disempowering to feel like you can’t make an informed choice because you can’t get the information you need.”

Writing Prompt: Have you had a time you were surprised by a medical bill, or found yourself ill and needing treatment when you didn’t have any health insurance? How did you feel? Consider writing a letter in second person to the insurance company, to the hospital, to yourself at that time, to the healthcare system as a whole. If you’re a medical provider, think of a time you tried to help a patient navigate the system regarding a medical bill. What was the experience like? Did anything surprise you? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: The Insulin Wars

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Dr. Danielle Ofri’s opinion piece in the New York Times last week outlines “The Insulin Wars.” As a primary care physician who cares for hundreds of patients with chronic diseases, including diabetes, I could relate to Ofri’s frustration and outrage on behalf of patients and providers.

Ofri describes how her patient’s insurance company keeps changing the insulin that is preferred and therefore covered. This can be challenging for both the patient and the prescriber to keep up with, and there can be serious health consequences if there is a gap in use of this critical medication.

Ofri notes that “[b]etween 2002 and 2013, prices tripled for some insulins.” She offers several reasons that this is the case, but highlights that insurers use “pharmacy benefit managers, called P.B.M.s, to negotiate prices with manufacturers. Insurance programs represent huge markets, so manufacturers compete to offer good deals. How to offer a good deal? Jack up the list price, and then offer the P.B.M.s a ‘discount.'”

The end result for patients who can’t cover the costs of this vital medication may mean self-rationing, fluctuating blood sugar levels, and rejected prescriptions. For physicians, “it’s an endless game of catch-up.” It’s also a “colossal time-waster, as patients, pharmacists and doctors log hours upon hours calling, faxing, texting and emailing to keep up with whichever insulin is trending. It’s also dangerous, as patients can end up without a critical medication for days, sometimes weeks, waiting for these bureaucratic kinks to get ironed out.” There can be dire consequences for a diabetic patient to have short or long term uncontrolled diabetes.

In trying to get her patient’s insulin switched to an acceptable alternative, Ofri discovers that the insurance company “now had no insulins on its top tier. Breaking the news to my patient was devastating.” Ofri realized that the insurance company had found a way to place the burden on physicians and patients: “Let the doctors be the ones to navigate the bureaucratic hoops and then deliver the disappointing news to our patients. Let patients be the ones to figure out how to ration their medications or do without.” This piece highlights a sobering fact too common in modern medicine: the system often gets in the way of the best interest of the patient. We can, we must, find a better way.

Writing Prompt: Have you encountered a similar issue with insulin, either as a patient or as a physician? Have you seen other vital medications involved? What frustrates you most about the situation? How does this issue affect the patient-physician relationship? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Jefferson’s Children

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We get a glimpse into both the patient and the physician’s perspective of a manic presentation in Maureen Hirthler’s “Jefferson’s Children“. Her dramatic opening (“If you don’t do something right now, I’m going to hurt my children.”) inserts the reader into the mindset of the patient, desperately asking for help to make sense of her racing and disturbing thoughts. As the emergency physician enters the scene, the narrative shifts and the reader becomes the provider, trying to make a definitive diagnosis and determine an appropriate treatment plan. 

The physician feels the patient should be admitted for psychiatric evaluation and treatment but is unable to find a bed for her and meets resistance from both the patient and her superior. Can you feel her frustration? Have you ever been in a similar situation?

The lack of appropriate, affordable and available psychiatric treatment has been discussed and debated much in recent years. What are the barriers you’ve noted to getting yourself, your loved ones or your patients the mental health care they need? If you could create the ideal mental health system, what would that look like?
Writing Prompt: Try writing from the first person perspective of a manic patient first arriving at the hospital or clinic. What about a severely depressed patient? A very anxious patient? Now write the same scene from the perspective of the medical provider (physician or therapist). How does the scene change?

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