Biology in the News Explained

Evidence-based medicine includes listening to the patient

One hears the term “evidence-based medicine” thrown around a lot these days, especially with respect to continuing discussions about the Affordable Care Act (ACA) of 2010. Long before the law passed, however, this term was a point of contention even within the medical community. Jerome Groopman offered his experience of what the trend toward “evidence-based medicine” has meant for the practice of medical care in his 2009 article Diagnosis: What Doctors Are Missing in the New York Review of Books. Though it’s a couple of years later, these issues have not yet been resolved and merit further discussion.

Politics has unfortunately colored the term evidence-based medicine (EBM).   For some it became synonymous with top-down control of health-care decisions.  For example, there seemed to be widespread outrage over the USPSTF changing mammography guidelines a couple of years ago, because some people seemed to think this meant that they no longer would be able to get mammograms if they want them.  But lost in all the kerfuffle was an explicit recognition in the report that a given individual might have specific, valid reasons for getting mammograms more often than the panel recommended, because the recommendations specifically addressed routine screening of women with no known added risk for breast cancer (such as having a close relative with the disease).  The “death-panels” hysteria hardly needs mention, but it warped purely for political gain the incentives for doctors to find out what their patients’ wishes are for end-of-life care.  So, to appease a small political faction the provision was taken out, and we are still mired in a system that often continues unwanted treatment in patients who can no longer speak for themselves, lowering quality of life and raising the nation’s health care costs.

Image courtesy Wikimedia Commons.

But the medical community does understand that individuals always need the option to tailor national public health directives to their own situation, and that’s where they need to encourage more doctors to get to know them well enough to understand what they want. And contrary to what many people think, EBM is not incompatible with patient-centered care, and in fact both are crucial for the best outcome possible (Sackett et al., 1996; Barratt, 2008):

Evidence based medicine is the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients. The practice of evidence based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research…Increased expertise is reflected in many ways, but especially in more effective and efficient diagnosis and in the more thoughtful identification and compassionate use of individual patients’ predicaments, rights, and preferences in making clinical decisions about their care…
Good doctors use both individual clinical expertise and the best available external evidence, and neither alone is enough. (Sackett et al., 1996)

It seems clear that much of the opposition in reforming health care in the U.S. is rooted in the misconception that EBM ignores what the patient wants, and this is where the “government takeover of healthcare” hyperbole comes from. In fact, in the early days of EBM discussion, in the 90s, there were even many doctors who had this misconception as well as another that their own clinical expertise was no longer valid, and opposed the whole concept of EBM in practice. Dr. David Sackett, one of the pioneers of the practice, attempted to dispel the idea that EBM was necessarily top-down control of doctor-patient relationships, and that it actually integrates science, experience, and patient preferences.

However, the fear of some doctors and patients that EBM will be used as a tool to mandate reductions in cost is not entirely unfounded. In some single-payer systems, such as Australia, incentives are used to raise the level of cancer and other health screenings (Barratt, 2008), which may, for example, put pressure on patients to undergo screenings that they would prefer to avoid for valid reasons. Part of the Affordable Care Act (ACA) involves numerous pilot studies to reduce costs in Medicare, and as many have written, there are certainly a lot of opportunities to do so. But it is important for whoever holds the purse strings — whether it be the government or an insurance company — to realize that using scientific studies to create screening or treatment guidelines at the population level is completely different from deciding what the best course is for an individual patient, both vis a vis the patient’s health, and his or her cost burden.

It is this recognition of the necessary difference in thinking between populations and individuals where many doctors (and the purse-string-holders) are still deficient. Part of this deficiency comes from relying too much on flawed medical studies (a common topic of this biology blog), and part of it comes from the misconception that EBM has nothing to do with the personal preferences of the patient.

Groopman hits the nail on the head in his review that the patient-preferences piece of the EBM puzzle is often missing in how doctors are currently trained, especially that even the best EBM is not usually appropriate for direct application to an individual patient:

Like all doctors educated over the past decade‚ residents [have] 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…Yet these excluded patients are the very people who heavily populate doctors’ clinics and seek their care.

It’s important that as a patient you expect the doctor to listen to you, and to incorporate your values and preferences into science-based discussions, as well as to acknowledge when the science isn’t very good. My own experience with cancer doctors has shown me the whole range. Some doctors will only present an opinion based on statistics even as they are smart enough to understand that the statistics are essentially useless in application to a single individual. I have had trouble with one particular oncologist like this who simply did not listen to me, and instead recommended a course of treatment that I believed in my case made very little sense (although he has been a very helpful and valuable doctor in other contexts).

Of course I have the advantage of an advanced degree in biology helping me understand better the current state of research in breast cancer.  That may come across as arrogant since I do not have an M.D., but I have another doctor who does listen to me, who will discuss the issues as we believe they apply to me specifically and to whom I listen. With him I have felt much more confident in my treatment decisions, which we made together and which thus far have worked out successfully (and were not what the first doctor recommended).  By the way, this doctor also dispels the notion that our system doesn’t allow the time to get to know patients.  Although it is clear that the pressure for doctors to see as many patients as possible is not a good thing, this doctor learned enough about me in a fifteen-minute conversation to make me completely trust that he was taking my preferences into account when he made his recommendations.  His skill was knowing exactly what questions to ask me.  This is a skill that obviously many doctors don’t have, but it seems it could be learned, if medical schools thought it was important enough.

There is also another type of doctor who seems to want to incorporate the patient’s wishes more but has a little trouble figuring out how to do so in a constructive way. Several medical oncologists gave me a chemotherapy recommendation among several options, but then just said, “but any of these choices would probably appropriate, so you decide,” without really giving me any tools to make an informed decision. In this case my professional experience doing primary literature research proved indispensable, so that I could make the best decision possible myself. (I am often grateful for this added expertise which of course most people do not have as a resource when navigating difficult decisions.) These doctors could probably use some help learning what questions to ask a patient to figure out her outlook and preferences about treatment, so crucial especially in oncology in which there frankly are usually many options, each of which is not particularly likely to work because no one knows yet what works for a given individual.

A final piece of the problem of putting true EBM into practice is the trend that American medical schools have been increasing their emphasis on doctors trusting machines to make diagnoses for them, instead of developing their own observation and listening skills. Thus their knowledge base becomes less supported by their own clinical experience, which is also an essential part of EBM as defined by Sackett. Abraham Verghese, author of the fantastic Cutting for Stone, which has as a major theme the skill of diagnosis via physical exam, is trying to reverse this trend by helping medical students revisit this forgotten skill. There are not enough doctors like him left to reverse this trend, however. So it is up to you, the patient, to be sure to find a doctor who listens to you and responds to your concerns in a way that makes sense.

And don’t let her tell you that she doesn’t have the time.  The difference in quality of life between someone who has had a doctor who has truly been a listening partner in helping make uncertain treatment decisions, and someone who has been told what to do based on statistics (or even worse, based on no convincing scientific evidence), should not be underestimated, because quality of life in turn affects a patient’s sense of well being and outlook, which do have an effect on treatment success.


Addendum:  Jerome Groopman has published his own book on the attempt to disentangle various cognitive biases involved in doctor-patient communication, called “How Doctors Think.”


Barratt A. 2008. Evidence Based Medicine and Shared Decision Making: the challenge of getting both evidence and preferences into health care. Patient Educ Couns. Dec;73(3):407-12. Epub 2008 Oct 8.

Davidoff F, Haynes B, Sackett D, Smith R., 1995. Evidence based medicine. BMJ. Apr 29;310(6987):1085-6.

Sackett DL, Rosenberg WM, Gray JA, Haynes RB, Richardson WS., 1996. Evidence based medicine: what it is and what it isn’t. Clin Orthop Relat Res. 2007 Feb;455:3-5.






4 Responses to “Evidence-based medicine includes listening to the patient”

  1. Marian Thier says:

    Terrific article and research. It’s refreshing to know that the healthcare field and mine are in sync in terms of awareness and interest in listening. Listening is definitely the access to understanding for all involved in the diagnosis and treatment of disease.

  2. Beth Katona says:

    Excellent discussion! Your experience with different oncologists mirrors mine. In 3 consults I ran across all 3 types: rigid, not taking my individual case into account; wanting to respect my choice but leaving me flapping in the wind with no framework for an informed decision; and engaging me as a partner and ultimately coming up with a plan I can feel comfortable with. You are right this type of listening can be trained. It really is a matter of asking the right questions AND providing a framework around information that helps a patient understand not only how to weight the information against their priorities, but also how to see around the corners that the doc has seen others navigate before but that are new experiences to the patient. As humans we don’t know what we don’t know. Most of us don’t spend our days with the kind of “triage” thinking that often needs to be applied in serious medical situations. Thanks for writing this!

  3. Trish says:

    One problem I’ve found in modern medicine is that, for all the attention being paid to the squishy-feely elements & emotions in patients’ lives, as a patient, it’s often difficult to get doctors to treat me as a reliable reporter on the malfunctions in my own body. For example, all my life, I’ve experienced food getting stuck at a specific spot in my esophagus. I can’t tell you how many doctors over the years have told me that emotions make people feel like food gets stuck, but it really doesn’t. Finally, in my 40s, when I had some other documented problems with myGI tract, I convinced my doctor to order a scan of my esophagus. The techie told me, “Ok, put your finger where yo think you feel things getting stuck” & to drink some barium. The barium pooled exactly where my finger was pointing, showing that the upper 1/3 of my esophagus was a floppy pouch. The guy went running down the hall & gathered up his colleagues so they could see me do it again. When he expressed his surprise at how exact I was in pointing to the location of the problem, I was like, “Hey, I *live* here.”

  4. Trish, there is an excellent book I would recommend to everyone (coincidentally, or not, also by Jerome Groopman) called “How Doctors Think” (whose link I have also now inserted at the end of the post). I think it is particularly relevant to your comment, because he addresses cases just like this, and the cognitive biases which trip up doctors in their diagnoses. One suggestion he makes is that there is a strong tendency for doctors to believe a problem is all in the patient’s head when they cannot find it, because that absolves them of responsibility. I think we would all agree that this is much more common when the patient is a woman, unfortunately (even when the doctor is a woman – I had a good friend who took years to get her patent foramen ovale diagnosed, and one of the doctors who was most rude to her about her symptoms being a form of “hysteria” was a woman).

    Check out the book. It’s a quick read and provides a lot of insight. Obviously Groopman hopes a lot of doctors read it too.

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