Health care’s four-letter word

A nurse midwife’s encounter with a patient struggling to pay a $1,400 bill and the sabotage of a graduate student’s effort to be a smart consumer have been chosen as the winners in a national essay contest about health care costs.

The writers, Tarcia Edmunds-Jehu and Brad Wright, will each receive $1,000, along with the knowledge that the personal experiences they’ve shared have helped put a human face on the abstract thing known as the cost of health care.

It’s the first time, as far as I know, that an essay contest like this has been held. I hope it won’t be the last. The sponsor, a nonprofit Massachusetts organization called Costs of Care, is working to make health care providers more aware of how their clinical decisions can affect the patient’s ability to pay. If you think patients are in financial control, consider this: According to Costs of Care, health care providers “ultimately determine how 90% of healthcare dollars are spent.”

One of the great things about essay contests is their power to illuminate real-life stories about the collision between patient care and the cost of providing that care. Reading each of these entries made me think hard about this issue. Some observations, in no particular order of importance:

- We talk a lot about the cost of health care – so much so that it has almost become one word, “thecostofhealthcare.” Yet we remain ambivalent about what it actually means. Many, if not most, consumers know health care is expensive and they recognize the need to be cost-conscious, but they don’t always connect these dots when it comes to their own care, nor do they realize how rapidly the costs can mount. Once Mike and Susan, the couple featured in the essay titled “From pain to poverty,” decided to call an ambulance and go to the emergency room, it triggered an inevitable cascade of high-cost services. How many consumers truly understand that if they show up in the ER with chest pain, they’re going to get the full monty, with all the expense this entails?

- There’s often a squeamishness over the fact that money needs to change hands when services are rendered. Many providers don’t discuss it openly with their patients, either because they don’t know how, they think it’s too sensitive, or it just doesn’t occur to them. Patients, for their part, can be reluctant to tell a provider they can’t afford a prescription medication or a CT scan. The conversation also is sometimes complicated by a belief that providers are greedy for wanting to be paid. But the math is simple: It costs money to provide health care and it costs money for consumers to receive it.

- Why are the uninsured billed the full price, while those with insurance can take advantage of the discounts negotiated by the their health plan? In Minnesota most hospitals now charge the uninsured the same rate as the largest commercial plan with which they do business, so they can receive a discount. This isn’t the case in most other states, though. The practice of charging full freight for the uninsured seems akin to Victorian-era debtors’ prison, in both cases penalizing those who are least able to pay.

- Much of the discussion about cost tends to focus on how consumers use (or overuse) health care services, how much they’re charged, and the need for price transparency. Less is said about in-network and out-of-network providers and how hard it can be for consumers to figure this out. Brad Wright, who submitted the winning essay titled “Blood test surprise,” tried to do everything right. He had health insurance and he was persistent in researching costs ahead of time – but he still got tripped up by the intricacies of in-network vs. out-of-network services. He writes, “My mistake was assuming the lab was in-network because the in-network internist I had just seen worked in the same building and referred me to the lab.”

- Although we’d like to think consumers can make rational decisions about health care spending in the same way they make decisions about buying a car or a pair of shoes, they often don’t. Emotion can enter into it, as in Mike and Susan’s case: He complained of indigestion and wanted his wife to drive him to the hospital but Susan, alarmed and fearful, insisted on calling an ambulance. If the couple had evaluated the situation more clearly, they might have realized the risk of a heart attack was probably low. But in the heat of the moment, how were they supposed to know? Which brings me to the next point:

- There’s often an enormous disconnect between the perspective of health care professionals and that of the lay public. It’s easy to criticize Mike for incurring unnecessary costs. Heart attacks are rare among 29-year-old men and a couple of antacid tablets would probably have relieved his symptoms without an expensive trip to the emergency room, or so the argument goes. This assumes, however, that Mike has the same knowledge as many health care professionals and can accurately assess his risk level, interpret his symptoms and take appropriate action. More than likely he can’t; he’s a layperson.

Ditto for some of the online reaction to Tarcia Edmunds-Jehu’s winning essay about the pregnant woman who had to pay for extra, and possibly unnecessary, ultrasounds. Some readers took the position that if the patient agreed to the additional ultrasounds, it was because she chose to do so. It’s a simplistic interpretation that ignores the possibility that the patient didn’t know, or didn’t understand, that the extra ultrasounds might be optional or that the patient may have felt pressured because the ultrasounds were recommended by a provider. And that brings me to another point:

- Patients can be held hostage in subtle ways to the whims and quirks of providers and the system. Mike was willing to go home from the hospital after it was determined he was unlikely to be having a heart attack – but he was told that if he did, it would be against medical advice. Because it was a weekend, he was forced to stay in the hospital until he could have a stress test on Monday. Then because of an equipment breakdown, he had to stay yet another day. He was billed for all of it, even though he had no control over when the test was scheduled.

Or take the case of “Sticker shock,” a finalist entry in the essay contest that describes how a patient ended up with $10,000 worth of out-of-pocket expenses for a surgery because the anesthesiologist turned out to be out of network. Dr. Grayson Wheatley, the author of the essay, writes that patients rarely are given any say over who their anesthesiologist will be. “Despite the anesthesiologist meeting the patient in the holding area before the procedure, no one informed the patient about his upcoming out-of-network charge related to anesthesia services or gave the patient an option to choose another anesthesiologist who was within his insurance’s network,” he wrote.

- If the patient’s out-of-pocket expenses are relatively small – and by “small” I mean a couple thousand dollars or less – the perception can be that this is no great hardship. But as the two winning essays clearly demonstrate, this is a false assumption. For Edmunds-Jehu’s patient, $1,400 worth of medical bills meant she had to choose between paying the bill and buying food for her family. It took Wright six months of economizing to pay the $478 he owed for an out-of-network blood test.

- There’s often a lack of creativity in developing ways to help reduce the cost to the patient. If you show up at an emergency room with chest pain, your choices are typically the full barrage of treatment or nothing. Whatever happened to a reasonable middle ground for patients whose chest pain is unlikely to be a heart attack? Here in Willmar, Rice Memorial Hospital created a pathway for these lower-risk patients, ensuring they’re appropriately evaluated and monitored but not subjecting them to aggressive, expensive and possibly unnecessary care. More hospitals ought to follow this example.

- The public dialogue about health care costs often focuses on consumers, as if they’re somehow to blame for all of it. The health care system itself has contributed significantly to the problem, however, and providers need to recognize the role they’ve played in the escalation of costs.

The conversation launched by Costs of Care isn’t over yet by a long shot. Starting the first week in January, a new story will be posted on the Costs of Care blog each week for the rest of the year. Information, links and updates also will appear on the organization’s page on Facebook. Is it too much to hope that at some point, “cost” will stop being health care’s unspeakable four-letter word?

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.

Uninsured and out of options

For the past couple of years I’ve been following the story of Jeannine. We belong to the same online discussion group. Jeannine is in her late 30s, lives in Los Angeles and works as a medical records transcriptionist. Five years ago she was diagnosed with marginal zone lymphoma in one of her salivary glands. It’s slow-growing and was treated in 2004 with radiation.

A few months ago, problems started to develop with her other salivary gland. For most people, this would mean a visit to the doctor, a referral to an oncologist and some diagnostic work such as a PET/CT scan and a biopsy.

Not for Jeannine, because she’s been uninsured for the past four years. 

It has truly been eye-opening to watch her perspective unfold. When I read her posts (she doesn’t post often, perhaps only once or twice a month, and there’s no reason to think she’s a fake or an Internet troll), the strongest impression I get is of someone trapped in a corner with no way out. Here’s something she posted earlier this year, worrying about whether she’d be able to pay out of pocket for a PET/CT scan:

My CT/PET in 2005 while I had insurance was about $5,000. Now I don’t have enough on my credit cards to pay that, will they allow me to make a deposit of say $100 or so and bill me for the rest? Or will they demand full payment up front before they’ll even do the scan?

She ended up putting the cost, around $2,500, on her mother’s credit card. And she had to make the full payment up front.

More recently she’s been having problems with her teeth, at least partially due to the radiation to her neck and jaw. She writes, "I consulted with 3 dentists here in LA and none will see me pro bono and they had no connections or solutions… I am completely tapped as far as credit."

There’s sometimes an assumption that the uninsured either aren’t trying hard enough to find coverage or just don’t want to pay for it. What I’ve been learning from Jeannine’s story is that even when help is available, it often comes with eligibility guidelines and many people simply don’t qualify. Jeannine writes that she’s single and child-free and earns about $20,000 a year. "I apparently do not qualify for anything at all," she writes. "I am stuck in the middle. The poverty level in CA is $14,500 a year."

If she lived in Minnesota, she might be a candidate for MinnesotaCare, the state’s subsidized program for the uninsured. But she wouldn’t automatically be eligible; she would have to live in Minnesota for a minimum of six months and be uninsured for at least four months, and she couldn’t work for an employer who offered health insurance and covered 50 percent or more of the premium. She might also be a candidate for the Minnesota Comprehensive Health Association, the state’s high-risk pool for people who are otherwise uninsurable. Here again, however, she’d have to qualify. And state laws allow MCHA to charge a higher premium than the rest of the marketplace – a premium that many people might not be able to afford.

Even these types of programs for the hard-to-insure are not a sure bet. Many of them in fact are under fire, often because of runaway costs. TennCare, for instance, was at one time lauded for helping Tennessee achieve nearly universal coverage, but the state eventually had to rein in the program and cut people from the rolls, leaving them uninsured once more.

Jeannine has tried to buy health insurance on her own, but because of her health history she’s either turned down or quoted a price there’s no way she can afford. She’s looked into the possibility of joining a clinical trial but there’s nothing at this point for which she’s eligible. Someone pointed her in the direction of a nonprofit cancer organization that offered financial support in the form of a one-time check for… $150. No, there is not a missing zero or two in that figure.

Although we’d like to think that nonprofits and charity organizations are helping to meet some of the needs of the uninsured, the reality is that they’re overwhelmed with demand. A couple of months ago Jeannine attempted to get into a free eight-day clinic being held in Los Angeles for the uninsured. She reports:

I waited in line for many hours before being told they had reached their max amount of people that they could help and was turned away – I only had one day off that week to do this, yet the demand was so great that I was too late, and this was only on day 2 of the event. They had already reached their full capacity, they came out and told everyone they could wait, but the likelihood of someone not showing up was probably zero, so don’t waste your time.

There’s a belief that the uninsured are clogging up emergency rooms across the United States because ERs are one of the few places where they won’t be turned away. In reality, they’re not among the majority of emergency-room users; the most recent estimate puts those without insurance at about 20 percent of all emergency-room patients. Most of the time they aren’t using the emergency room as a substitute for regular medical care; usually they’re there because a chronic or non-urgent problem has gone unattended and has mushroomed into something acute.

I think the biggest lesson I’ve learned from Jeannine is how it feels to be uninsured:

… I am holding off far too long for medical care because of not just the fear of large bills but the absolutely unbelievable feeling of shame that comes attached to it. The looks and reactions I get are that somehow it is my fault, that I must have been irresponsible and somehow I deserve to be uninsured.

She has been MIA from the discussion group for a couple of weeks so I don’t know right now how she’s faring. She seems smart and savvy, and I can’t help wondering how someone could fall so completely through the safety net. One of these days her cancer will likely progress to the point of needing treatment, and I have no idea how she’ll be able to manage it.

The hurting middle class

Who is your neighbor? For most of us, it’s probably someone in the middle class – employed, maybe with a couple of kids and a dog, and increasingly likely to be uninsured or to struggle with paying out-of-pocket health care costs.

The middle class arguably has been squeezed the most by the rising cost of health care, says Jay Kieft.

Kieft, who is the director of Kandiyohi County Family Services, recounts the story of a local family who couldn’t afford employer-sponsored health insurance so they bought cheaper, high-deductible coverage instead. Then one of their children was severely hurt. Swamped by the resulting medical bills, this family ended up losing their home.

If you canvassed your neighborhood, you could probably find similar stories of ordinary people struggling to keep up with their health care expenses, Kieft told an audience today at Bethel Lutheran Church. It was the second in a month-long series of guest speakers on health care reform, organized by Bethel’s social ministries group to invite local conversation on how to fix health care.

There was so much food for thought in Kieft’s presentation that it would be impossible to cover it all. So instead I’ll share some of the highlights:

- There’s a safety net for the poorest of the poor, but the middle class – those earning a gross annual income of $44,000 to $88,000 – can generally expect little if any help paying for their health care coverage or health care expenses. Virtually none of them are eligible for assistance if they turn down employer-sponsored coverage because they can’t afford the premium.

For more context, consider this: Two-thirds of all jobs in Kandiyohi County pay less than $15 an hour. Health care premiums are rising at a faster rate than wages.

- The middle class is becoming uninsured at an accelerated rate. This report by the Kaiser Family Foundation found that nearly 25 percent of the non-elderly uninsured in the U.S. are from middle-class households. "To me that’s kind of an appalling number," Kieft said. "Where are their supports? How are they making up for the loss of health insurance?"

- As employers opt for higher deductibles and co-payments to rein in the cost of providing health coverage for their workers, how much of this burden can middle-class employees be expected to assume? Many working-age households are spending a growing proportion of their income on health care needs, especially if they are chronically ill.

- A growing number of people are skipping or postponing needed care because of the cost, Kieft said. When he asked for a show of hands on how many people in the Bethel audience had ever done this or knew of someone else who had, some hands were raised. "This is the United States of America. This is hard for me to accept," Kieft commented.

- Can we accomplish health care reform by tinkering at the margins rather than seeking wholesale change? Kieft’s opinion: Probably not. "It needs to be reform. It can’t be just a tweak here and a tweak there. We can’t complacently accept the status quo," he said.

- American attitudes about the health care system also need to change. People need to take some responsibility for the decisions they make, and not expect to pick and choose "like they’re in Wal-Mart," Kieft said. "We’ve got to examine that attitude if we want health care reform to work."

The next event in the Bethel series is at noon Wednesday, Aug. 19. It will feature Chris Conry of Health Care for America Now, with an overview of the health care reform bills under consideration by Congress. The last speaker on Aug. 26 will be Gary McDowell, administrator of Family Practice Medical Center in Willmar, on what this local clinic is doing to meet the challenges of the current health care environment.