Diagnosis: What Doctors Are Missing
Long time Medrants’ readers know that I hold Jerome Groopman in high esteem. He has a wonderful article in the New York Review of Books in which he review two new books and provides this wonderful commentary.
At the clinical conference, I recounted this reality to the interns and residents, and emphasized that like every doctor I knew, I had made serious errors in diagnosis, errors that were detrimental to patients. And I worried aloud about how changes in the delivery of health care, particularly the increasing time pressure to see more and more patients in fewer and fewer minutes in the name of “efficiency,” could worsen the pitfalls physicians face in their thinking, because clear thinking cannot be done in haste.
When the discussion moved to formulating ways of improving diagnosis, I raised the issue of the growing reliance on “clinical guidelines,” the algorithms crafted by expert committees that are intended to implement uniform “best practices.” Like all doctors educated over the past decade, the residents had been immersed in what is called “evidence-based medicine.” This is a movement to put medical care on a sound scientific footing using data from clinical trials of treatment rather than on anecdotal results. To be sure, this shift to science is welcome, but the “evidence” from clinical trials is often limited in its application to a particular patient’s case. Subjects in clinical trials are typically “cherry-picked,” meaning that they are included only if they have a single disease and excluded if they have multiple conditions, or are receiving other medications or treatments that might mar the purity of the population under study. People are also excluded who are too young or too old to fit into the rigid criteria set by the researchers.
Yet these excluded patients are the very people who heavily populate doctors’ clinics and seek their care. It is these many patients that a physician must think about deeply, taking on the difficult task of devising an empirical approach, melding statistics from clinical trials with personal experience and even anecdotal results. Yes, prudent physicians consult scientific data, the so-called “best evidence,” but they recognize that such evidence is an approximation of reality. And importantly, clinical guidelines do not incorporate the sick person’s preferences and values into the doctor’s choice of treatment; guidelines are generic, not customized to the individual’s sensibilities.
At the conference, an animated discussion followed, and I heard how changes in the culture of medicine were altering the ways that the young doctors interacted with their patients. One woman said that she spent less and less time conversing with her patients. Instead, she felt glued to a computer screen, checking off boxes on an electronic medical record to document a voluminous set of required “quality of care” measures, many of them not clearly relevant to her patient’s problems. Another resident talked about how so-called “work rounds” were frequently conducted in a closed conference room with a computer rather than at the patient’s bedside.
Twice this week I gave my Grand Rounds talk on guidelines. While I had some success with this talk, I believe I also failed to make my main point to everyone. Guidelines should help us care for patients, if they were sparse, specific and limited to those issues with strong supporting data. Guidelines never help us until we make an accurate diagnosis.
I will have to modify my talk to make my points more clear. But perhaps I was not the problem, but rather some members of the audience have accepted the concept that guidelines are necessary and good. If that is the problem, then my attempts at explication were ignored.
Now overall the audiences like the talk and did understand the main point.
Groopman has written about the problems of misdiagnosis for several years. I fear that the medical establishment is not attending to this message. Too many leaders focus on the term quality without understanding that quality starts with a correct diagnosis.
Later in his review he writes this paragraph:
Nor were these perceptions of the change in the nature of care restricted to reports from patients and their families. They were also made by senior physicians. My wife and frequent co-writer, Dr. Pamela Hartzband, an endocrinologist, reported conversations among the clinical faculty about how a price tag was being fixed to every hour of the doctor’s day. There were monetary metrics to be met, so-called “relative value units,” which assessed your productivity as a physician strictly by measuring how much money you, as a salaried staff member, generated for the larger department. There is a compassionate, altruistic core of medical practice—sitting with a grieving family after a loved one is lost; lending your experience to a younger colleague struggling to manage a complex case; telephoning a patient and listening to how she is faring after surgery and chemotherapy for her breast cancer; extending yourself beyond the usual working day to help others because that is much of what it means to be a doctor. But not one minute of such time may be accountable for reimbursement on a bean counter’s balance sheet.
The suits have done damage to medicine. The bean counters create major negative unintended consequences.
Patients need physicians who spend time with them. Patients need physicians who sit down, look them in the eye and talk. Patients need honesty and empathy. Bean counters do not understand the value of the patient-physician interaction.
Please read Groopman’s essay. Please pay attention to both his words and his meaning. Jerome Groopman understands the physician role. Bravo!
{ 8 comments… read them below or add one }
Sent from the Whistleblower:
This is a very thoughtful post. Before we demonize the ‘suits’, however, the medical profession should accept our responsibility for the state of our profession. We didn’t act proactively when the forces of reform were swirling about. We didn’t confront the excesses in our profession. We assumed that our elevated position in the social and professional hierarchy was fixed. We were wrong. Because we didn’t step in, others filled the vacuum and, over time, proceeded to ‘reform’ us. This led to managed care, HMOs, PPOs, RVUs, pharmacy benefit managers and insurance company control of our profession. Now, a public option is looming, a cure which may be worse than the disease. What are doctors doing?
I am very suspicious of medical guidelines, another focus of the post. While the word ‘guidelines’ suggests an educational tool, they often take on the force of ‘mandates’. They become requirements that handcuff clinicians. As pointed out in your post, many of our patients are different from the cohort that was used in formulating the guidelines. I have been told, from time to time, that an action I was contemplating violates a guideline. So what? These ‘white papers’ forged by academics are not laws or edicts, but suggestions for us to consider. They should be used to inform and enlighten, not to shackle and restrict us. How much freedom remains for us to advise and treat our patient today? There’s not much left for us to give up. http://www.MDWhistleblower.blogspot.com
Groopman is always worth reading, but he does set up a straw man when he says that guidelines are not customized to the individual’s sensibilities. Does he mean “evidence-based medicine” in making this statement? There are some interesting definitions of EBM at http://www.shef.ac.uk/scharr/ir/def.html. One of these calls it “an approach to decision making in which the clinician uses the best evidence available, in consultation with the patient, to decide upon the option which suits that patient best.”
The timeframe of EBM is interesting to look at. A Medline search for “Evidence-based medicine” from 1980 to 1990 yields exactly 1 hit; from 1990 to 1995 there were 97 hits, from 1995 to 2000 there were 5692, and in the past 3 years there are more than 23,000.
It is no coincidence that EBM took off for real in the wake of the fiasco with oral antiarrhythmic drugs in the late 1980s, which ought to have worked, based on what was known about pathophysiology and pharmacology of these agents; when randomized trials showed a strongly counterintuitive result that they increased death rates, the credibility of the randomized trial took a jump. Decreasing PVCs should have predicted survival, but the RCTs gave answers that contradicted the intuitions of many very sharp clinicians. RCTs are blunt instruments to be sure, but they gained their overweening prominence for some very good reasons.
That said, if in fact morning rounds are now routinely conducted in front of computer screens, that is an appalling situation! I can only hope that that is an anomaly and not a general rule.
Excellent post. thanks.
Regarding your comments on guidelines. IANAD – but my husband and I try to be informed patients. A while back – a local cardiologist (erroneously) told my husband he probably needed a heart valve repair soon. So – through family/friends of family emails – there are a lot of doctors in my family – we wound up with a surgical consult with a big deal heart valve repair surgeon at Mayo Rochester. Before our trip – I read the relevant ACC guidelines. At least 4 times. With a medical dictionary (I am a retired lawyer who did a lot of technical work – everything from complicated insurance litigation to complex building failures – so I’m used to reading tedious technical things and trying to understand them). Got a pretty good handle on the guidelines. When we got to see the surgeon (after lots of tests up at Mayo) – he said the guidelines were out of date – were much too conservative – and had been disproven in many respects in years of clinical practice – both by Mayo cardiologists and cardiac surgeons (results had been published and I read them). I kind of got the impression that by the time you get a huge percentage of doctors in a particular field to agree about something – and it’s finally put in written form – it’s out of date. These were the only guidelines I ever read (it’s not exactly the kind of thing you do for fun and games). Is my general impression correct?
Whistleblower has nailed it. You can’t say it much better than that.
Let me just add evidence based medicine is a “fool’s errand”. As someone wise said early on in the fad – it’s a fancy way of saying “read the damn literature”. Osler and Cushing would be appalled at the unquestioning belief in studies, many of which are quickly contradicted (to say nothing of what they would think of rounds in the conference room). And these are people who believed in writing!
But EBM was elevated quickly to some sort of religion. It once was that doctors would read studies and case reports (which are no longer important, try getting one published in a major medical journal) and discuss their strengths and weaknesses, and adjust their practices accordingly. Some studies were stronger than others but they were simply a map, not the territory.
The medical profession, and some of the poseurs who wrote about EBM, elevated it to this pedestal it stands on today and younger physicians do not understand how foolish that is.
I fear it is too late to put the toothpaste back in the tube now that the bureaucrats and Government wonks have seized on it and a new generation of physicians knows nothing different.
Data are not facts, facts are not truth, truth is not understanding, understanding is not wisdom.
Cory raises the issue of getting case reports published in major journals. But they do get published often. J Bone Joint Surg Am has these every month, in addition to randomized trials, and it is one of the most “evidence-level” based journals out there. In the last three months these papers have appeared:
Staged Surgical Dislocation and Redirectional Periacetabular Osteotomy. A Report of Five Cases
Multifocal Osteonecrosis Caused by Traumatic Pancreatitis in a Child. A Case Report
Retention of a Well-Fixed Acetabular Component in the Setting of Massive Acetabular Osteolysis and Pelvic Discontinuity. A Case Report
Third-Degree Heart Block Associated with Bupivacaine Infusion Following Total Knee Arthroplasty. A Case Report
Tibial Cartilage Hypertrophy Due to Matrix-Associated Autologous Chondrocyte Transplantation of the Medial Femoral Condyle. A Case Report
Lead Toxicity Associated with a Gunshot-Induced Femoral Fracture. A Case Report
JBJS is a major orthopedics journal; perhaps other journals do not publish case reports. But two recent issues of Ann Intern Med have these case reports:
Inappropriate Diagnosis and Chelation Treatment of Alleged Heavy-Metal Toxicity
Localized Amyloidosis at the Site of Enfuvirtide Injection
Different journals have different patterns of case report and case series publication, but these reports are not obsolete. EBM does not necessarily drive them out of the literature.
Ed: Perhaps overstating my case but not by that much. Not obsolete, but not exactly flourishing.
Yes, subspecialty journals still publish case reports, they are a staple in some subspecialty journals, but in the major nonsubspecialty journals, they are fewer and much farther between (I suspect you had to go to two issues of the Annals of Int Med to get two good examples). I don’t think you can deny the diminished importance of case reports, and more importantly the discussions they presented, in the medical literature., which of course was their major value. I certainly saw that over time as a reviewer in several of the major journals. Case reports had a devil of a time even getting a second look.
The point being that the literature has become so enamored of data, charts, graphs, statistics and really dense prose that a simple discussion of patients and disease, the staple of medical care, is becoming lost – certainly on the next generation of trainees.
This might be dismissed as a geezer ranting against the natural progression except for two things – the argument has always been going on between empiricists and those demanding data, it has now reached new heights (in large measure due to computers which allow any mope to crunch numbers and publish them) and we acquiesced in not putting some context into this trend – as Whistleblower noted. See how far you get trying to explain context to some resident quoting the latest trials in some EBM rant.
Think of this as medicine’s version of Moneyball where the guys with the computers fight with the old-time baseball guys about who knows what (case reports are the old-time scout reciting what he saw in Willie Mays). The right answer, of course, is a judicious combination of both – something we are drifting away from in medicine, at times without even realizing it.
The core paradigm of EBM has four components: in patients with a particular CONDITION, does ONE intervention , compared with a CONTROL intervention, produce a difference in a MEASURABLE OUTCOME?
Researchers like to have outcomes with numerical distributions that lend themselves to statistical testing. Patients and doctors like to have outcomes that have something to do with what is actually bothering the patient.
EBM may finally stand or fall based on its ability to focus on the latter kind of outcome. If the patient has rheumatoid arthritis, there are measurable serologic markers of disease activity which may have the desired statistical distributions, but if the patient is actually complaining of overwhelming fatigue, that trumps the more numerically tractable outcome. That is why patient-centered outcomes have gained favor in recent years.
But the good old New England Journal has been having case records of the Mass General since Hippocrates was a third-year student, and continues to have case reports and case series, generally at the end of the Original Articles section marked as “Brief Report.” Just in October, they have:
X-Linked Thrombophilia with a Mutant Factor IX (Factor IX Padua)
Osteoporosis Associated with Neutralizing Autoantibodies against Osteoprotegerin
Recurrence of Bile Salt Export Pump Deficiency after Liver Transplantation
Also, their Clinical Problem Solving feature still focuses on individual case presentations.
JAMA and the Annals don’t have such great case reports and series, I agree.
Maybe it comes down to nuance; the management of individual cases require lots of it and number-crunching requires less. As George W. Bush said to Joe Biden on the eve of the Iraq war, “Joe, I don’t do nuance.” This can be a costly omission; if EBM neglects it, eventually the goddess Nemesis will punish its hubris.
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