More ’empowered’ patients question doctors’ orders

Source: www.usatoday.com
Author: Mary Brophy Marcus

In the past, most patients placed their entire trust in the hands of their physician. Your doc said you needed a certain medical test, you got it.

Not so much anymore.

Jeff Chappell of Montgomery, Ala., recalls a visit a couple of years ago to a Charlotte emergency room, near where the family used to live, with his wife, Jacqueline, who has adrenal failure.

“I blew up loud enough for everyone in the ER to hear me explain that while we were insured, an MRI was about a $1,000 co-pay,” Chappell says.

The couple knew her symptoms well (primarily stomach pain), knew that an MRI was not necessary under the circumstances and knew that a cortisone shot was what she needed.

“The doctor walked off in a huff,” Chappell says, but later came back and “compromised” by agreeing to give his wife the shot, but not before taking an abdominal X-ray to rule out other problems first.

Many physicians say an increasing number of patients are getting involved in decisions about their medical care, including medication choices, whether they need a specialist, and especially whether they need expensive diagnostic tests, which some health economists say are driving up the cost of health care.

‘Shared decision model’
“There have been big changes,” says Patrick McManus, residency director of family and community medicine at Thomas Jefferson University in Philadelphia.

“Some of my older patients are still more deferential, but more and more, we talk with patients now about the shared decision model — looking at costs and benefits and risks.”

Though some doctors find the newer “empowered” patients taxing, others, including McManus, welcome involvement and questions, especially since they recognize more patients are ponying up for larger co-pays or are uninsured and covering entire medical fees themselves.

And when it comes to medical testing, some of the newer, more invasive tests can have risks a patient should be aware of and discuss, too, he says.

“It’s so important for patients to know what they’re getting tested for — the risks and limits of testing. And to know how sensitive the test is: how likely it is not to miss disease if you’ve got it, and how likely a positive result is actually a true positive,” McManus says.

In her new book, The Empowered Patient (Ballantine Books, $15), CNN senior medical correspondent Elizabeth Cohen says doctors’ offices are often chaotic and disorganized, so patients need to stay on top of their care before and after testing. And they should double-check questionable lab reports.

Q&A: Elizabeth Cohen’s tips on being a medical advocate

When her obstetrician received a test result during one of her pregnancies, Cohen says, “he stabbed the paper with his index finger and said ‘If this number was right, you’d be dead.’ ”

Is it OK or not?
It’s common for some patients to not know what they’re getting tested for.

“I meet a lot of people, new patients, who don’t know what tests they’ve been given,” says Carrie Burns, an assistant professor of medicine in endocrinology, diabetes and metabolism at the University of Pennsylvania School of Medicine.

In fact, Burns says, she has had longtime diabetes patients come in who don’t know what an A1C is — it’s a commonly ordered blood test given several times a year to monitor average blood glucose levels — or whether they’ve had one.

Some patients just don’t ask questions, Burns says: “It may be because they don’t want to know all the information. They just want to know if it’s OK or not. Maybe they were raised in a time when medicine was more paternalistic.”

But she says she appreciates those patients who ask what a test is all about.

“Being empowered is important,” Burns says. “Ask for copies of your testing, make sure you get test results back from your doctor, and call if you do not.”

Everyone is wary
Other doctors say they could live without the scrutiny.

“When these empowered patients walk in, it’s really tough,” says David Metz, associate chief of gastroenterology at Penn, who does a broad range of tests.

“People walk in sometimes and say, ‘I’m recording this discussion.’ On the doctoring side, it’s not that easy. I say, ‘You can do whatever you like, but I’m going to give you a letter at the end of this reiterating everything you need,’ ” Metz says.

“We do a lot of testing for a lot of conditions,” he says, including blood tests, endoscopic studies, including those where a camera is swallowed, CT scans, MRIs, barium X-rays, nuclear medicine tests and breath bacterial tests.

Though some assertive patients can be problematic, Metz says, the root cause of their behavior and overtesting is the health care system, which he says is broken.

Payment is unequal
For example, Metz does routine colonoscopies on patients he never meets until the morning of the colon-cancer-screening procedure. The patients are sent to him by their primary care physicians for their baseline screening at age 50. Insurance does not cover a pre-procedure visit.

He says that sometimes creates risks because, though the patient sends in a health form before the test, not everything is always conveyed ahead. Patients show up with complications that sometimes make it difficult to do the procedure, he says.

Health economists also growl about medical testing costs and the way they’re managed.

“There’s a ton of overspending. We’ve created a system where overspending is rampant and built-in,” says Tom Getzen, executive director for the non-profit International Health Economics Association, which was formed to increase communication between health care economists.

He says medical testing is rife with what’s referred to as “cost-shifting.”

“You might go in and get an X-ray that costs $10, but someone else without insurance is paying $500. But it doesn’t cost $500 every time you put a person through that machine,” says Getzen, who explains that the insured patient got the lower rate because his employer swung a bulk deal with the testing company.

“At least at the ballpark, I know what I’m gonna get. I’m paying 5 bucks for a burger, and so is the next guy,” Getzen says.

He says hospitals are huge overtesting culprits. They take big losses, and tests help pay the bills, he says.

Other specialties witness overtesting and overspending, too.

“Newer, sensitive imaging tests will pick up nodules and cysts that result in a huge work-up, and then it ends up being benign,” says Brett Fenster, an assistant professor of medicine at National Jewish Health in Denver.

“The time that patients are worried about having the ‘big C’; the expenses incurred for further testing; the potential that something will land in their chart that keeps them from getting insured in the future; the worry and concern their family and they go through while waiting for results — losses all around.”

No news isn’t good
In her book, Cohen concedes that she sometimes has a hard time speaking up.

“Don’t worry about what your doctor thinks of you, either,” she says. “Tell him you didn’t like that it took him two weeks to get back to you on test results and ask, ‘How can we do this better next time?'”

For financial and health reasons, Fenster says that before any test, patients should ask, “How is this going to change what happens to me down the road? Is it going to give me a prognosis and impact my treatment, or will this be a dead end?” If it’s the latter, maybe the test could be skipped, he says.

Another reason to question before testing: Tests don’t always offer black-and-white answers, says Jefferson’s McManus.

He says he orders routine body mass indexing and cholesterol and blood pressure screenings every day in his office. Tests such as cardiac catheterization, to see whether arteries are clogged, colonoscopies and genetic tests should be discussed with more care with patients because false positives or negatives can occur. Mammograms also have a higher rate of false positives, he says.

When it comes to genetic testing, patients should be given information about the test and have an opportunity to ask questions, both before it’s ordered and after the results are in, says Erin Miller, a certified genetic counselor at The Heart Institute at Cincinnati’s Children’s Hospital Medical Center.

“The risks and benefits of testing are unique to each patient and family,” Miller says.

Chappell, who says he had a positive ER visit at the same hospital after his son wiped out at a skatepark a few months later, says every patient should be his or her own advocate, and it helps to have a spouse or family member be one, too, whether you’re in your doctor’s office, the ER or the hospital.

“Someone needs to know what’s up,” Chappell says, “and needs to be watching out for your care.”

Tips on how to be a bad patient:

• Women have an especially hard time speaking up, Cohen says. Trust your gut if something feels off.

• Don’t assume everything’s hunky-dory if you never hear back about test results, she says. One out of 14 times you have an abnormal test result, doctors will fail to let you know, according to Archives of Internal Medicine research out last year. Cohen says it shouldn’t take more than a day or two for simple lab-work results, a week or more for complicated tests.

• If you experience pain during a test or a medical technician seems out to lunch or begins running a test you don’t think was ordered, “Say, ‘Let’s stop for a moment, what are we doing, can you explain?’ ” says University of Pennsylvania endocrinologist Carrie Burns.

• If a tech can’t give you answers you need, ask to talk with his supervisor or your doctor, says Peter McGough, chief medical officer for University of Washington Medicine Neighborhood Clinics in Seattle.