The Misdiagnosis Dilemma

PATIENTS RELY ON healthcare providers’ knowledge and skill to diagnose medical issues and properly treat them. Much of the time, diagnoses are well-considered and correct. But, sometimes, they come into question, and patients seek a second opinion. And, other times, doctors are not entirely sure about their diagnoses, perhaps due to a lack of specific equipment or facilities that could aid them, which can be especially true when diagnosing rare conditions.

Misdiagnoses are revealed more often than one might expect at tertiary referral hospitals. A 2017 Mayo Clinic study found as many as 88 percent of patients who seek a second opinion are given a new diagnosis that often differs greatly from that of the referring physician. In other words, only 12 percent of these patients’ original diagnoses are confirmed.¹ “It’s a very complex problem,” says Robert Lohr, MD, a coauthor of the study and an assistant professor of medicine in the division of hospital internal medicine at Mayo Clinic in Rochester, Minn.² So complex and important is the issue of misdiagnosis, in fact, that the Institute of Medicine called the need to study it a “moral, professional and public health imperative.”^3,4 Justifiably, it’s important for healthcare professionals to consider the costs to the medical profession, the public and, especially, patients in the event of a misdiagnosis. A second opinion leading to a correct diagnosis could help patients avoid unnecessary treatment, stress and financial expense. It could also bring them and their families relief if the original diagnoses were more serious.

The Plight of Physicians According to Dr. Lohr, their study focused on primary care physicians and patients they referred into their general internal medicine division for a variety of reasons. “These were not just physicians, but also nurse practitioners and physician assistants,” he says. “We don’t know what went into the decision to make the referral, and there are a lot of reasons that can go into that. Certainly, the provider can throw up their hands and say, ‘Gee, I don’t know what to do next, we need some help.’ Or, they may have tried a lot of things, and they’re just getting nowhere. The patient may even say they’re getting nowhere and request to go someplace else. Or, it may be, and I think this is very often the case in primary care, that the complexity of the problem appears to be more than they can handle in the very short time frame that most primary care physicians are working under. They’re seeing a patient every 10 to 15 minutes. Some problems take much longer than that to sort out. So, about one in five of the patients who were referred received a pretty different diagnosis.

“They simply don’t have the time, the resources or even, in some cases, the technology to hone in on some of these problems. It really all boils down, in the long run, to having the time to do a thorough history and a physical. That is the basis from which everything else is generated. If you have the time to do that, and you have the time to think about it, you can usually go down a proper diagnostic pathway. If that isn’t working, you regroup and maybe go in a little bit different direction. But, if you don’t have the time, or it’s something that you need more laboratory or radiologic evaluation for, then patients have to be referred.

“The broader issue, though, really has to do with the level of experience new physicians have. Less-experienced physicians tend to cast very broad nets and, in general, do a lot of evaluation. More experienced physicians tend to hone in on things a little bit more precisely, and maybe cast a narrower net to begin with. There are problems on both sides. In the first situation, you may be doing a lot of unnecessary testing. In the latter situation, you might not be doing enough. There’s a fine line in between, but I think the bottom line is whether you’re experienced and have the time, or inexperienced and have the time. To evaluate the patient, you need to be able to shift gears. If the direction that you’re going doesn’t seem to be correct, then you need to regroup or ask for some assistance.”²

Dennis Bourdette, MD, FAAN, FANA, professor and chairman of the department of neurology at Oregon Health and Science University (OHSU), agrees: “I think a lot of physicians have heavy workloads, so it’s almost a hassle to think more about difficult patients. It seems to me it’s personality, too. Some of the neurologists who don’t refer patients for second opinions are actually people I know because they trained with us, which is shocking. My opinion is that it’s an ego thing with them. Some doctors get offended if a patient asks for a second opinion. If I have a patient who wants to get a second opinion, I’m more than willing to refer them out of our system. I do think part of it can be a lack of humility. To work up a patient as an academician and not know what the diagnosis is, and then say, ‘I’m going to send you to Mayo Clinic and have them figure out the diagnosis,’ well, that can be a humbling experience. I prefer to think I’ve done my job as a physician, to make sure patients get appropriately diagnosed. If I have to get help from another physician, so be it. The bottom line is providing good care to our patients.”⁵

The Costs of Misdiagnosis

Dr. Bourdette is all too familiar with the pitfalls of misdiagnosis. Notably, he and his colleagues have conducted studies regarding the misdiagnosis of multiple sclerosis, a disease he is an expert in treating. “Depending on the nature of the misdiagnosis and the type of problem that the patient has,” he explains, “misdiagnosis has serious psychosocial health and economic implications. Consider multiple sclerosis [MS]. We have these very expensive medicines which are generally safe, but some of them have serious and even life-threatening complications. The cost of these medicines, which are not curative but life-long for a diagnosis of MS, are running about $80,000 a year now. So, if someone is misdiagnosed with MS, and they’re put on an $80,000-a-year medication, it doesn’t take very many misdiagnoses for that to have a huge economic impact — not to mention the impact on the patient being mistreated rather than treated for what they actually have.”

Dr. Bourdette adds that insurance companies often make obtaining a second opinion quite difficult for patients. This is a potentially serious problem for everyone because, “a colleague within the same system is much less likely to question a diagnosis than someone outside the system. It’s just human nature, unless you’ve got a nonjudgmental, supportive situation in which physicians discuss challenging cases.” According to him, the MS misdiagnosis rate at OHSU is roughly 5 percent. “Some of the patients we see have seen a neurologist in the community and [have] either been told they have MS or probably have MS, and we determine that they do not have MS,” he says. “I think misdiagnosis is a real problem that is not currently being addressed in an adequate fashion.”⁵

Curbing the Misdiagnosis Problem

To curb the misdiagnosis problem, Dr. Bourdette says education is key: “I think the insurance companies should be interested when we’re talking about diagnoses that have significant costs that come with the therapy. Frankly, to avoid a 5 percent misdiagnosis error with MS alone, not to mention equally expensive diseases, it would actually pay the insurance companies to get a second opinion before approving placement of a patient on disease-modifying therapy. If there was a commitment to doing this for certain indications in particular, when there are significant interventions that are either costly or potentially harmful, that maybe a second opinion should be required.”

Dr. Bourdette is quick to add that second opinions can also be performed remotely for many disorders, and usually less expensively. For example, he does roughly 30 of these consults a year. “Typically, I’m seeing someone who may have MS, or has MS or related disorders, and there’s a treatment decision being made,” he explains. “So the physicians provide a case summary and imaging, like an MRI scan. Then there’s a series of questions they want answered. There’s a pretty rapid turnaround. My experience with that is I’m often either reassuring the patient that the diagnosis is correct and the recommended therapies are correct, or I’ve raised questions about the diagnosis and alternative diagnoses and alternative approaches for treatment. There are different ways to get a second opinion. Not everyone can fly to the Mayo Clinic for that. But, again, depending on the disorder and what the implications are, getting a second opinion is useful. I think this is an important, unrecognized and not widely discussed problem.”⁵

Dr. Lohr has similar thoughts about how to curb the problem of misdiagnosis, but he adds, “If a patient comes in for a 10- or 15-minute appointment, but this is clearly going to go beyond that and it isn’t an emergency, it’s prudent to say, ‘We’ve got to have more time.’ Then, schedule the patient when you can devote the time the diagnosis deserves. I think a difficulty is when that isn’t done. Doctors often think they must see a certain number of patients, and they’ve got to figure out a diagnosis in 15 minutes. That can tend to get physicians into some trouble because they’re not taking the time that’s needed. I think being current and recognizing when more time is needed is key. And if you truly don’t have the time, then refer the patient to somebody who does. Referral centers, whether at Mayo or any academic referral center, expect to see complex patients, so we don’t have to see patients in 15 minutes. Primary care physicians do, but if you’re in more of the referral part of the practice, you do get more time.”²

Praise Where Praise Is Due

Dr. Lohr wants healthcare professionals to understand he does not think those who refer patients for a second opinion are doing a poor job. Instead, he feels concern for doctors who might assume he’s being critical. The Mayo Clinic study “has generated a fair amount of media attention since its publication,” he explains. “One of the things I have been asked is whether I, as the consulting physician, look down upon or think doctors who are making the referrals aren’t doing their jobs well. There’s nothing that could be further from the truth. They are working extremely hard, doing the best they can, but, again, with somewhat constrained time and occasionally resources. The vast majority of the time, they’re hitting the mark right and are right on. Primary care physicians work very hard [and have ] enormous time constraints on them, not just from the standpoint of seeing a lot of patients. But, there are time-motion studies that suggest for every hour you spend seeing patients face to face, there are two hours of paperwork generated by that. So they have a lot of responsibility. But, there are situations where another set of eyes and ears can be helpful.”²

Misdiagnoses are a dreaded, yet largely unspoken problem in many clinics and hospitals across the country. Dr. Bourdette sums up a possible solution: “If more attention is called to it, we’ll start seeing more interest in the problem. And I think insurance companies should actually be very concerned about this.”⁵