Best-selling author of the Get What’s Yours series Philip Moeller takes on health care in his new book, Get What’s Yours for Health Care (Simon & Schuster, January), which explains how to make intelligent health care decisions, talk to your doctor and receive the best possible care. In this excerpt, Moeller discusses how too many tests, procedures and other care can lead to unneeded care and bad outcomes, as well as the costs of misdiagnoses from too little careâ€”and what steps you can take to get just the right level of care.
Overtreated and OverbilledC.J. Burton/Getty
Americans get too much care they don’t need and too little care they do need. These twin problemsâ€”unneeded and misdiagnosed careâ€”plagued medicine long before Hippocrates asked an Athenian to say “Aah” more than 2,500 years ago. They are fueled by doctors with the best of intentions and those who are not well informed or paying more attention to their wallets than their patients’ needs.
Whatever the causes, Americans consume too much health care, boosting the nation’s annual medical bills by $750 billion to $1 trillion. This waste is driven by health providers who encourage it and consumers who demand too much care, often because they don’t know the true cost of that care.
At the same time, millions and millions of Americans receive the wrong medical diagnosis. Their doctors either treat them for the wrong maladies or don’t uncover their true health needs and thus fail to treat them at all. Patients can be complicit here, failing to communicate effectively with their physicians. Whatever the causes, misdiagnoses are a huge, largely invisible medical problem.
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The Cheapest Care Is the Care You Don’t Need
The good news about unnecessary care, often called wasted care or low-value care, is that this problem has been solvedâ€”on paper. Beginning in 2012, the American Board of Internal Medicine (ABIM) began assembling recommendations from leading clinical groups and medical societies about low-value treatments. Today, its Choosing Wisely initiative has grown to encompass roughly 600 sets of low-value treatment guidelines from nearly 90 medical societies and other clinical experts. There is a smartphone app (search for “Choosing Wisely”) that lets people choose from 115 or so sets of common, low-value medical treatment situations that are explained in plain English. Unneeded tests and treatments for lower back pain are one good example of this.
Unneeded tests are often ordered for back painand are potentially counterproductive. The Choosing Wisely site discusses factors for consideration regarding imaging: it will not help you get better faster, there are risks involved and the tests are expensive. It also addresses symptoms that might be reasons for imaging.Tetra Images/Getty
Other partners, including state health groups, have been using real-world health insurance claims experience to help determine the incidence of unneeded care. Milliman, the actuarial consulting firm, developed the MedInsight Waste Calculator to help researchers identify promising areas to reduce wasteful medical spending.
In the real world, unfortunately, progress to reduce unneeded medical care has been slow. It can take years for new clinical guidelines and treatment protocols to become widely accepted by doctors, let alone understood by patients. Further, there are strong incentives for ordering tests and procedures. They are covered by health insurance, often demanded by patients and are perceived by many clinicians as a defense against malpractice claims.
We have been given little reason to question how much unneeded care we get or how to avoid it. It usually takes a wave of high-visibility media attention to change public perception. The national plague of opioid addiction, fueled by massive overprescription, is a sobering example.
A 2017 study reviewed the substantial research done since 2012 on the impact of Choosing Wisely’s efforts. It found three compelling reasons for low patient engagement with efforts to reduce unneeded care:
- “Most Americans remain poorly informed about the costs and benefits of particular treatments.”
- “Many patients still seek tests or treatment even when informed that they are unlikely to yield much benefit, because they have been conditioned to fear rare, life-threatening events.”
- “Many patients proceed with low-value treatment either because they distrust the evidence of its low value presented to them or because they suspect that the resources saved will only bolster an insurer’s or provider’s profit margins rather than benefit the public.”
“There’s a whole culture [change] that’s going to have to happen on the consumer side, of moving away from ‘more is always better,'” said Beth Bortz, head of the Virginia Center on Health Innovation. The center has researched low-value care using the Milliman tool.
“A lot of Americans think that more imaging, more testing, is always worth it,” Bortz said. “I think a lot of times consumers don’t understand the risks of unnecessary imaging, long term. You don’t want more CT scans than you have to have.”
Beyond the cost of an unnecessary test, she said, there is possible physical harm and longer-term cost and emotional impacts keyed to the results of that first unneeded test. Such “cascade” effects can occur when test results delay treatment, lead to other tests or reveal other possible health issues, setting off yet another round of tests.
A research study of internists found that nearly all of them had experienced cascade effects from incidental test findings and that twice as many patient encounters produced no clinical significance versus those with meaningful medical implications requiring further treatment. About a third of the tests might have been unneeded, the doctors told researchers.
“Most physicians reported that cascades had caused their patients harm (86.7 percent), including psychological harm (68.4 percent), treatment burden (65.4 percent), financial burden (57.5 percent), dissatisfaction with care (27.6 percent), physical harm (15.6 percent), disrupted social relationships (8.7 percent), and death (0.2 percent),” the study found.
Several states have used Milliman’s MedInsight tool to look at the percentages of specific medical procedures found to be unnecessary. Virginia and Washington studies looked at nearly 50 procedures and analyzed use patterns by examining millions of private health insurance claims filed by state residents.
“The two best health care tests in America are PSA [prostate specific antigen] and pap smears,” MedInsight product manager Marcos Dachary told me. “Then, with a straight face, you can say the two worst tests in America are the PSA and pap smears.” Interpretation matters here.
“Understanding the patient, the patient’s age, the patient’s prior conditionâ€”all of that nuance or context allows us to weigh in appropriateness” to help determine if a procedure was warranted or unnecessary. The procedures used in the Virginia and Washington studies, he explained, were those where the clinical nuances had the least amount of wiggle room for interpretation by providers.
The Virginia Center on Health Innovation study used six procedure categories and found that between 20 and 100 percent in each were unnecessary. The Washington Health Alliance has gotten similar results in its studies.
Unnecessary and expensive MRIs for routine health concerns top the list, accompanied by annual tests and screening procedures that produce little benefit, along with prescriptions of opioids and other powerful drugs for lower back pain, headaches and other normal aches and pains.
The incidence of low-value care is also widespread in Medicare, according to a 2018 analysis for Congress. “In 2014, there were between 34 and 72 instances of low-value care per 100 beneficiaries,” the report said. “Between 23 percent and 37 percent of beneficiaries received at least one low-value service.”
Sometimes imaging is not in your best interest. These low-value procedures can lead to cascade effects resulting in additional rounds of tests that do not speed up the time for recovery and sometimes delay treatment that may help. Ron Levine/Getty
What’s a Patient to Do?
Odds are you trust your doctors and are predisposed to follow their advice. If not, you’d probably look for new doctors. So, when your trusted health care professional says you need a medical procedure or test, you are conditioned to agree.
This can be a stressful interaction to begin with, especially if you’re feeling bad and already think something may be wrong. Why would you possibly turn down an offer of care, especially one that is covered by your health insurance?
Well, you should at least take a time-out at this point. Without seeming to question your doctor’s expertise, there are ways to give yourself some breathing room.
“Thanks for your guidance and suggestions,” you might say. “I’d like to go home, give it some thought and talk it over with my family. If I did go ahead, when do you recommend I have this done?”
A Connecticut collaboration with Choosing Wisely looked at ways that patients can protect themselves from unnecessary care. It came up with five questions to ask your doctor; groups in other states now use the list below. Ask those questions and consult a checklist for getting the right care. Several medical and patient safety organizations including the National Patient Safety Foundation and the Society to Improve Diagnosis in Medicine have developed widely-used patient guides and a four-page checklist to help you get the right care.
Choosing Wisely’s 5 Questions to Ask Your Doctor
- Do I need this test or procedure?
- What are the risks and side effects?
- Are there simpler, safer options?
- What happens if I don’t do anything?
- How much does it cost, and will my insurance pay for it?
Accurate Diagnosis and Second Opinions
Sue Sheridan became a first-time mother more than 25 years ago. Her son was born in 1995. Like many newborns, he had jaundice. Unlike only a few others, he had a more serious condition that went undiagnosed by caregivers at her community hospital in Boise, Idaho.
“My son suffered brain damage from kernicterus [a rare form of brain damage in jaundiced newborns] that was not diagnosed to treat his newborn jaundice. [Jaundice is] very, very, very common,” she said when I spoke with her late in 2019. “It’s the most common newborn phenomenon. There are national guidelines out there. And nobody followed them. And he ended up with brain damage.
“A lot of patients don’t even think about looking up guidelines,” she said. “I wish I would have….That was in 1995. He now has severe cerebral palsy.”
Sheridan’s exposure to the effects of a missed medical diagnosis was not over. “After my son’s effort, four years later my husband died because he had a tumor in his cervical spine that was removed. We were told it was benign.
“What we didn’t learn,” she continued matter-of-factly, “was that 23 days later a final pathology report came out. By now, he was discharged. And it was a malignant cancer, and that document never got presented to the neurosurgeon. It got put in my husband’s fileâ€”his medical records. And the neurosurgeon never saw it, so his cancer went untreated for six months. And by the time the pain came back, it was too late. And so my husband died [three years later] when he was 45.”
Enduring these devastating family tragedies triggered Sheridan to switch careers from international trade financing to health care and, in particular, patient safety. Sheridan looked deeply into what was being done to protect patients. “I thought somebody was in charge of keeping us safe,” she said. “I learned that no one is in charge of keeping us safe.”
Sheridan looked deeply into what was being done to protect patients. “None of the agencies [including the Food and Drug Administration (FDA), the Centers for Disease Control (CDC) and other groups] is tasked with keeping us safe,” she said, lamenting the absence of a health care equivalent to the National Transportation Safety Board, which investigates accidents and identifies ways to prevent them. “We don’t have that in health care.”
Sheridan cofounded Consumers Advancing Patient Safety (CAPS), which eventually led to advocacy work with the World Health Organization. Since early 2018, she has been head of patient engagement at the Society to Improve Diagnosis in Medicine (SIDM).
Sheridan also fought to get a better deal for her family. She and her late husband, a physician, brought a malpractice action in 1997 related to their son and fought all the way to the Idaho Supreme Court. There the Sheridans won, triggering a substantial award to fund Cal’s lifelong care.
After her husband’s death, and with the knowledge learned during the grueling case involving her son, Sheridan settled out of court. “I just did not trust the system,” she said in explaining her decision.
In addition to financial awards, Sheridan is proud that the actions over her son and her late husband’s treatments included formal changes in hospital treatment policies. “Malpractice doesn’t change the system,” she said. “They wanted me to sign gag clauses and seal everything up, and I refused to do that. Diagnosis is the beginning of the journey, and the beginning of what we hope is the right treatment,” Sheridan noted. “If you don’t get the right diagnosis, you’re getting the wrong treatment.”
Bad Medicine Is a Leading Killer
I wish that Sue Sheridan’s experience was rare, unusual, unexpected or some other comforting word. It is not.
Each year, an estimated 40,000 to 80,000 people die due to medical diagnoses that caused them to receive the wrong medical care or no care at all. Even the lower range of this estimate is comparable to annual gun deaths. I’m hard pressed to find either epidemic more frightening than the other. There is, however, no public outrage over lethal medical mistakes.
This is likely because people don’t know the scale of medical misdiagnoses. The range of death figures cited here is based on autopsy results, not guesswork. And while avoidable deaths are down slightly from estimates made 20 years ago, the death toll from bad or at least off-base medical advice remains enormous.
The incidence of bad diagnoses that do not lead to fatalities is broader still. A 2014 study found that about 5 percent of all medical diagnoses for outpatients were in error. Based on the number of people interacting with health care then, this worked out to 12 million cases a year.
Where to StartVascular events (strokes, heart attacks, pulmonary embolisms and related circulatory conditions), infections (principally sepsis) and cancer are the three leading sources of misdiagnoses. The potentially deadly consequences of these events should put you and your personal health posse on high alert.
Women and minorities need to be particularly alert to bias in their diagnoses. They have been routinely excluded from disease research studies and remain underrepresented. As a result, their symptoms may lead to erroneous diagnoses. A woman who presents in an emergency room setting with chest or back pain might be diagnosed with acid reflux or gastro esophageal reflux disease, Sheridan said. That might be true for men, but she could be having a heart attack. Gender bias is worse for African American women, who are at higher risk for stroke. Unless your doctor tells you your condition is life-threatening and requires immediate treatment, your initial response to a diagnosis involving serious conditions should include asking your provider what treatment they recommend, where it be performed and if there is a time it should begin.
When decisions don’t need to be made on the spot in an emergency room, don’t rush things. “Thanks for providing your thoughts,” you might say. “It’s a lot to take in all at once. Would it be okay if I set up a follow-up appointment to discuss this further?”
A diagnosis related to any serious medical problem should trigger an extensive and broadening circle of research among friends, medical professionals in your community, disease-specific sites, leading medical sites and social media advocacy groups.
SIDM has a patient toolkit that can help prepare you for a deeper dive with your doctor. It’s an interactive form you can complete and print out that asks you questions about your medical condition, symptoms and any related personal or family medical history, plus a list of your medications. It allows you to record pain issues.
Bring a complete copy of your medical records and tell your doctor anything helpful. Lack of complete or accurate patient records is regularly cited as a contributing cause of medical misdiagnoses. Ask Choosing Wisely’s 5 questions (see above), and ask some care questions from SIDM’s toolkit below.
Your doctor recommends additional tests. Now what?Here are some follow-up questions to ask from SIDM’s toolkit:
- What is my diagnosis? What else could it be? And what’s the worst it could be?
- Why do you think this is my diagnosis? From test results? From my physical exam?
- Can you give me written information on my diagnosis? A pamphlet? A website?
- Can you explain the test/treatment you want me to have?
- What are the risks to the test/treatment you want me to have? What happens if I do nothing?
- When do I need to follow up with you?
- What should I do if my symptoms worsen or change, or I don’t respond to treatment?
- Can you suggest a specialist who treats the condition you’ve diagnosed? I would like to make an appointment with them. (This one is mine, not from SIDM)
A variant of this sequence applies when the misdiagnosis may consist of the absence of a diagnosisâ€”a missed call of an illness or condition. Doctors face much tougher medical issues than they once did, simply because the things that medicine now can treat have expanded, as have the tools and medicines for treatment.
“The explosive growth in medical evidence and new technologies ends up being a double-edged sword,” the SIDM site notes, “making diagnosis more accurate but also more complex at the same time.”
If your doctor or your child’s doctor feels a health condition is not seriousâ€””She just has the flu”â€”you should follow up with the “what else might it be” or “what’s the worst it could be” question. Your doctor needs to hear your concerns, and in thinking about how to reply, they just might change their opinion and do you and your child a lot of good.
Health reforms in Washington seem to be the only ones that get broad attention. But important reforms in the delivery of health care happen all the time, albeit at a less headline-generating pace. Evidence-based tools to spot the care you need and the care you don’t are great examples of how people can make informed health decisions. In the process, they can achieve better health outcomes and often spend a lot less money on their care.
Get What’s Yours Rx> Up to a third of all medical care is unneeded.> Use “Choosing Wisely” to spot unneeded care.> Learn how to spot bad medical diagnoses, which kill as many people as cars or guns.> Your doctors aren’t perfect, so talk to them about suspect care recommendations.> Ask your doctors informed questions and use good checklists of things to cover.
â†’ From Get What’s Yours for Healthcare: How to Get the Best Care at the Right Price by Philip Moeller. Copyright Â© 2021 by Philip Moeller. Reprinted by permission of Simon & Schuster, Inc.