The handbook of hard-luck tales

Ever since Costs of Care announced a national essay contest for people’s personal stories about their health care bills, I’ve been eagerly checking the website to see how the contest is faring.

The wait is almost over: Winners will be announced next week. In the meantime, six finalists – three clinicians and three patients – have been chosen. Entries are being judged by a distinguished panel whose members include author and essayist Dr. Atul Gawande; Jeffrey Flier, dean of Harvard Medical School; Michael Leavitt, former U.S. Secretary of Health and Human Services; and Michael Dukakis, former Democratic nominee for president of the United States.

It would be hard to think of an organization better suited to something like this. Costs of Care is a nonprofit organization focused on creating greater awareness, especially among doctors, of how everyday clinical decisions can have an enormous financial impact on patients.

Of the stories that have been posted on the website so far, what mostly comes through is frustration, mixed with no small amount of sadness for everyone who’s caught up in a system that ought to be cost-conscious but seldom is.

There’s the story of a 41-year-old pregnant woman, an immigrant with a low-paying job who no longer has enough money to buy food. What tipped her over the edge? Three ultrasound bills, only one of which was covered by her insurance. Tarcia Edmunds-Jehu, a nurse midwife from Boston who submitted her story to the contest, writes that two of those ultrasounds probably weren’t even necessary and wouldn’t have made any difference on the outcome of the pregnancy – but because of the mother’s age, they were ordered as a routine precaution.

Edmunds-Jehu sums it up:

We almost never think about what a test costs or whether it is paid for. Trying to find out the cost of a test is sometimes almost impossible. We almost never stop to think if a test is really indicated, or if the results will change the course of their treatment.

As providers we order tests because they are there, or because it’s easy, or because everyone gets them, or because we are scared if we don’t we’ll be sued, or because of arbitrary protocols. Sometimes we order tests because it’s the best thing for a patient.

No one orders tests thinking we might be taking food out of the mouths of our patients and their families, but sometimes that is exactly what we are doing.

Another finalist entry comes from Brad Wright, a graduate student with a $3,000 deductible. When he developed a sinus infection, he was sent for a CT scan and a blood panel. What he didn’t know, until the bill arrived a month later, was that the laboratory was out of network – even though it was in the same building as the doctor’s office. The cost: $478. He writes that the experience “taught me a lot about our fragmented health care system, how little patients or providers know about the real cost of health care, and how hard it is for patients to make price-based decisions when the system isn’t designed with that in mind.”

To my mind, one of the most disturbing tales is this one, which comes from Dr. Steve Sanders, a primary care doctor in Tulsa, Okla. It’s the story of “Mike,” a 29-year-old unemployed, uninsured truck driver who wound up with a bill for $11,000 after going to the emergency room with chest pain. I’d urge you to follow the link and read the whole story to get all the details.

Many of these stories, especially Mike’s, have sparked some heated online discussion here, here and here.

How do clinicians balance between what’s necessary and what isn’t? When does reasonable care turn into defensive-medicine overkill? Should clinicians know the price for each service and recommend what the patient can afford, or should they recommend what’s best for the patient regardless of cost? Do patients need to be more assertive? Or should they just suck it up and pay the bill without complaining?

Clearly patients have to take some responsibility. Consider the case of Mike, who “forgot” to get on his wife’s health insurance plan after losing his job and ended up being uninsured, then told his doctor he would have to file for bankruptcy because he couldn’t pay his $11,000 ER and hospital bill. For one thing, forgetting to sign up for health insurance – especially if it’s available and affordable – is a pretty huge lapse of judgment. For another, why not first try to work out a payment plan with the hospital before filing for bankruptcy?

But the other side to this is that patients are often held hostage by a system that lacks transparency and gives them little control. The pregnant immigrant probably had no way of knowing whether additional ultrasounds were beneficial, one commenter wrote at The Health Care Blog: “She probably was too intimidated to even ask or question the doctor. A consumer-friendly health care system would have provided her the right information (in a manner she could understand) to help her make the right decision.”

Some commenters bashed Mike for going to the emergency room via ambulance for what turned out to be indigestion. Sure, it was expensive, but “the system delivered what was asked of it,” one online commenter wrote. “Health illiteracy at its finest” was the assessment of one of the commenters on the Costs of Care blog.

Others pointed out that the patient couldn’t have known the diagnosis ahead of time – and that when he wanted to leave the hospital, he was warned it would be against medical advice. “In most developed countries an ER doc would take responsibility for telling the guy to go home, but to come back if certain symptoms appeared/became worse,” wrote a commenter at Kevin MD. “This has little to do with tort reform and everything to do with being a physician.”

What’s the answer? I wish I knew. Unfortunately stories like this are common. I’m only surprised the Costs of Care essay contest received 115 entries rather than 1,150. Stay tuned for the announcement next Wednesday of the winner.

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