April Box couldn't see a way forward. Two surgeries failed to fix a disorder she had since birth that affected her ability to walk, and a doctor told her she would never get around again without crutches.
She couldn't accept that.
So she sought other opinions. She had more procedures done. Finally, three years ago, she underwent hip replacement surgery, allowing her to walk again without issues.
Most important, she learned how to advocate for herself as a patient. Today, more than 25 years later, she helps others do the same thing. Box is a professional patient advocate in Spokane, helping those struggling through the health care system achieve success.
"You're a consumer," she says. "It's one of the harder areas in our life to think of ourselves as consumers, because we just kind of take it as we see it, because insurance says, 'Go see this person.' They're in a position of authority. So you have to push back on that a bit and [advocate for] your own wishes and desires."
The business of medicine is changing, and patients must now take more responsibility for their own medical treatment. But navigating the complex health care scene can be daunting for patients. In order to avoid a potential disaster, they need to know things like how to protect themselves in the hospital, or how to understand their medical bill.
Robin Shapiro is co-founder and president of Washington-based Allied Health Advocates, a company that encourages people to be active participants in their health care.
"Nobody," Shapiro says, "teaches us how to be a patient."
GETTING A BETTER VALUE
It used to be simpler. Doctors would examine a patient, then recommend treatment without patients having much say. That's changing, says Shapiro.
"It's evolved into a shared model, where the doctor will use his or her background and skills, and also incorporate value and what [the patients] want," she says. "Together they can come up with treatment."
Part of the reason for the change has to do with the Choosing Wisely campaign. Choosing Wisely is a national initiative of the American Board of Internal Medicine that encourages physicians and patients to discuss necessary treatment based on evidence-based recommendations. It recommends, for example, that doctors cut down on prescribing antibiotics for upper respiratory infections, or reduce the frequency of certain unnecessary procedures.
Ideally, it results in patients spending less for more effective treatment.
Reducing unnecessary treatment will reduce costs of medical care for everyone, says Carl Olden, a physician at Pacific Crest Family Medicine, a clinic in Yakima. However, convincing patients to avoid a treatment they may not need can be difficult.
Olden is a member of the board of directors for the American Academy of Family Physicians, which partners with the Choosing Wisely campaign. He gives the example of administering a CT scan. Many patients who come see him for a headache may want a CT scan, on the off chance something is seriously wrong. But often, the risk of a CT scan outweighs any potential benefit. It's a challenge explaining to patients that they don't need it, Olden says.
"That takes a long time to have that discussion. It's easier to say, 'Let's go ahead and get it,'" Olden says. "We have to fight against that."
Olden says one of the challenges of implementing Choosing Wisely recommendations is that the system is set up against it. Providers generally get paid more if patients are repeat customers. Olden says health care reimbursement needs to change, incentivizing quality, evidence-based practices over quantity of visits.
"That's wishful thinking," Olden says. "But that's where we need to get if we want to bend cost curves and improve outcomes."
That means giving physicians more incentive to provide quality care.
Kelly Stanford, Group Health's vice president of clinical operations and market integration, says that physicians now largely are compensated every time they do something — perform a procedure or order a test — a "fee-for-service" system. But for the amount of money we're spending nationally on health care, the results of the current system are lacking, she says.
According to a 2015 analysis by the Commonwealth Fund, the U.S. spent almost 50 percent more on health care as a percentage of Gross Domestic Product than the next highest spender, France, and almost twice as much as the United Kingdom. But the report notes, "Despite spending more on health care, Americans had poor health outcomes, including shorter life expectancy and greater prevalence of chronic conditions."
Stanford says that Group Health, soon to be part of Kaiser Permanente, a nonprofit that refers to itself as an "integrated managed care consortium," has always paid attention to health care value because it operates under a system in which care is integrated with the patient's coverage.
"We need to fundamentally change the system to align what people are paid for and what they're working on," Stanford says.
The Choosing Wisely campaign and a value-based approach both ultimately depend on patient cooperation. If patients know they have some control in making decisions, they may take more ownership and be better informed, Stanford says.
"I think it's key in making this shift to value-based care," she says. "You have to have the patient engaged and involved."
MISTAKES WILL HAPPEN
One of the benefits of being an informed customer, Shapiro says, is that it helps avoid hospital mistakes.
"Your doctor or surgeon is really a partner in care, and it's not a 'me vs. you' scenario," she says. "The doctor is a professional, but nobody is more informed about an individual than that particular individual."
In many cases, both patient advocates and health care professionals say that hospital mistakes may be prevented if patients know the right questions to ask, aren't afraid to advocate for themselves, and have someone at their side to help out.
Medical care, by nature, is imperfect, says Richard Cook, an anesthesiologist and research scientist studying patient safety at Ohio State University. New treatments and new surgical procedures are always being developed, meaning that improving patient safety is a moving target.
"We try and reach as far as we possibly can and get the best results for people we can, knowing we are going to fail, knowing we are not going to have good results for some people," Cook says. "That's not reassuring for the patient."
Hundreds of thousands of people in the U.S. acquire infections during treatment in a health care facility each year, and tens of thousands of people die from those infections, according to the Centers for Disease Control and Prevention. Additionally, 400,000 people experience an error in medication each year at a hospital, according to a report from the Institute of Medicine.
Io Dolka is a founding board member of the Washington State Health Advocacy Association and patient advocacy organization GreyZone. As a patient, Dolka experienced errors in surgeries to remove brain tumors twice within a span of five years. In 2010, following the first surgery, she had to go back to the hospital because of a complication that dropped her blood sodium level down to a dangerous level. Protocols were in place, but the signs that could have predicted the issue went unnoticed.
Following the second surgery to remove a separate benign tumor, Dolka found out she had a specific condition that could lead her to experience a severe, life-threatening allergic reaction if given blood. But nobody ever told her about it; she had to find it on her own.
"If it wasn't for me looking for it, this would have slipped through the cracks," Dolka says.
For Dolka, these experiences illustrate the fact that medicine is an error-prone art and science, and that some errors are harder to avoid than others. While more vigilance could have caught the drop in blood sodium levels, Dolka says it "went from point A to point B so fast" that it would have been difficult. But the second error — not notifying her about a condition that could have put her in danger — was something that the medical team is fully responsible for, Dolka says.
Either way, she says it's better if patients are active in their own care.
"We all, as patients, need to know that no matter what you do, mistakes will happen," Dolka says. "All you can do is be extremely prepared for it."
UNDERSTANDING YOUR BILL
Dianne Walkup, a patient advocate based in Tacoma, helps catch errors in people's bills for a living. From her perspective, too many bills have some kind of coding error that could cost patients, except that patients usually don't catch them.
"They're deliberately written so that you can't understand them," Walkup says.
After any sort of medical procedure, patients will receive a few things. First, as you leave the hospital, a list of services that were performed. This is not a bill. Later on, you'll receive an explanation of benefits from your insurer. This also is not a bill; it explains how insurance benefits were applied to that claim.
In between, you'll probably receive the bill from your provider, with a list of charges for each service. Often, there's more than just one bill. Why? Renu Sinha, a thyroid surgeon with Inland Surgical Associates in Spokane, says it's because the doctors who see patients are not always a part of the hospital bill. An anesthesiologist, for example, might be part of a separate bill. Hospitals also sometimes outsource specialties like pathology and radiology.
"Sometimes even the blood work that you have done at hospitals is going to be sent out. So you might get a bill from somewhere in California if that's the place that gets the lab," Sinha says.
Walkup says a common error is duplicating charges. If a patient gets a lab test done, sometimes the billing office will bundle all of the charges from one test. But sometimes you'll get charged again for each different test.
"Those are excess charges, and most people don't even catch them," Walkup says.
Sinha says all patients should be checking their bills for accuracy. Errors can be as simple as a provider, like Sinha, simply missing a number when inputting the code.
"There's clerical errors that cause a lot of this from the provider end, and also from the coding end," she says. "And I think we have to remember that, as patients, we have to watch out for this. Just like when a Visa or MasterCard bill comes, you should look at it."
While insurance companies should catch some errors, they won't catch all of them. Melanie Coon, spokeswoman for Premera Blue Cross, says Premera processes nearly 15 million claims per year. Of those, 86 percent are never touched by a human. She says the system is configured to catch potential errors. The other 14 percent get stopped for some kind of edit — a member hasn't paid their bill, or there's some sort of error.
But the insurance company would have no way of catching a scenario in which a patient is billed for a procedure they never received. That's up to the patient to find.
Becky Reith, director of operations for Premera Blue Cross, says that medical insurance has changed in the past 20 years. Consumers, she says, didn't need to understand their benefits decades ago. But now that deductibles are increasing, and more people have insurance who never had it before, it's become more necessary for patients to learn how to understand their bills.
That means not only understanding the hospital bill, but also what your plan covers. Reith says she would hope that people start to understand their medical insurance coverage like they do their car insurance.
Adds Coon, "The more savvy people are, and the more they understand what they're getting, that helps bring down the cost of care for everyone."
TAKE THEIR ADVICE
Although no one wants to exaggerate an illness or run up a big bill, Cook, the anesthesiologist and research scientist at Ohio State University, says it's better to get to the hospital before you are critically ill, if possible.
Once at the hospital, he says, patients need to ask questions and make sure they understand what is going on; the American College of Surgeons (facs.org) has a detailed questionnaire you can refer to, and Cook advises people to be as honest and complete as possible about all the medications and substances they're taking. Patients should also ask providers what the procedure will cost.
You can research your hospital ahead of time, too. Word of mouth can be helpful, but there are more vigorous assessments available. The Leapfrog Group is a national nonprofit whose volunteer expert panelists produce a Hospital Safety Score each year (hospitalsafetygrade.org). More than 2,500 hospitals received letter grades in 2016, including the hospitals of the Inland Northwest. And Medicare just released its own star-based hospital ratings in July (medicare.gov/hospitalcompare).
If you are going in for surgery, Shapiro recommends taking time to choose a surgeon. Ask the surgeon how often they perform the surgery. Generally, the more times a surgeon does a procedure, the more proficient he or she becomes at it. Surgical errors can range from a dangerous object left in a patient's body to a relatively harmless accidental cut. Ask about the surgeon's complication rate for the surgery you are undergoing. The public interest journalism group ProPublica calculated complication rates for eight common surgeries and published those results in July 2015. Patients or prospective patients can search ProPublica's "Surgeon Scorecard" database online at projects.propublica.org/surgeons.
Though each surgery is different, Shapiro, of Allied Health Advocates, says a few safety tips apply to most medical procedures or hospital stays. Stay alert about the medications you are being given. If you're hooked up to an IV, Shapiro says you should ask the nurse to remind you what's going in the bag and write it down. Be on the lookout for the potential of acquiring an infection; make sure anybody coming into the room has washed their hands. And it never hurts to have another set of eyes and ears. Ideally, someone should stay with you, especially overnight to make sure an accidental fall doesn't occur.
After a procedure, collect all the bills and a list of any medications. Keep track of what's been done to you, maybe even have a notebook handy, and then compare that to the bills you collect, Shapiro says. If there's an error on the bill, go to the billing source. There are databases online where you can look up billing codes, so use those to your advantage. And it might be a good idea to have someone, anyone, help you go over the charges.
"I think an informed consumer is the best consumer of anything," Shapiro says. "And nowhere is that more important than our health." ♦