The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 20 November 2015 20 November 2015
Reviewed by R. Sanderson
Everyone will get sick at some point and will turn to his/her doctors, whether to primary care providers or an emergency room (ER) staff, with the assumption that the problem will be carefully and accurately evaluated. If the problem is pretty straightforward, then a diagnosis is made and the patient is prescribed an appropriate treatment-problem solved. Seeking medical care as individuals with multiple health problems has become a daunting task for many of us-but is there anything we can do?
In the book, How Doctors Think, Dr. Jerome Groopman delves into decision-making processes used by doctors in patient care. Inconsistencies, snap judgments and times of uncertainty which lead to a wrong diagnosis were discovered to be a very common problem, even for individuals without complicated medical histories.
The idea for this book occurred to him only a few years ago while doing routine hospital rounds with teams of internists, residents and/or medical students. They would check in on a group of patients and congregate afterwards to go over each case. He observed that many in these teams did not seem to be listening nor following the patients' cases too attentively. Unlike working on "paper cases" in medical school, they were not challenging each other's thoughts on the different patient cases.
As doctors start to go out on their own, many will not reflect over how they arrived at a diagnosis—in other words, if asked, some may not be able to elaborate on the steps that led them to their conclusion. It is not uncommon, especially in certain settings, for doctors to start looking for illness patterns (pattern recognition) and focus on what appears to be the first and most likely possibility, with only preliminary data on hand. Therefore, the diagnostic process is not as thorough or as impartial as patients might expect.
In fact, it has been found (by way of reports submitted by doctors) that about 15 percent of all diagnoses are wrong. Dr. Groopman states that he wrote this book with the layperson in mind, so that patients and their families could better understand the thought process (or lack of it) in patient care and be given general advice in how to try and help their doctors help them.
In the clinical setting, time is often limited and there is a tendency to focus on what appears to be the first and most likely possibility. The patient's history, results of the physical exam and results of any diagnostic tests will be used to make a diagnosis, but it is not uncommon for doctors to start deciding on a likely diagnosis within the first minutes of meeting a patient. A patient's appearance (such as weight) any bad or questionable habits (such as tobacco, alcohol or illegal drug use) and/or if the patient appears to fit some type of stereotype, play a considerable role in the diagnostic process.
A patient's age and overall state of health can also influence the doctors' opinions. Case in point was that of a man in his early forties who came to the hospital complaining of chest pains. Since he was fairly young, led an active lifestyle, and looked quite healthy, the conclusion was made that nothing too serious was wrong with him. Several days later, this man returned in acute distress with myocardial infarction (a heart attack)—his healthy appearance had misled the attending doctor. However, it should be noted that 20% of patients who come to the ER with chest pains would actually have normal EKGs. An additional problem in this case is that the tests used to make diagnosis still need improvement, as current testing methods are not able to quickly and accurately detect cardiac problems.
With time pressures and many interruptions in the ER setting, or in response to other urgent situations, doctors often employ a technique called "heuristics". This is a form of problem solving based primarily on probable, possible, or constructive conclusions, rather than on strong medical data and thorough analysis of that data. Therefore, a patient's diagnosis might be made on fairly limited, incomplete or selective data.
It is not that much different in primary care settings, where time restraints do not allow doctors enough time to think and to get to know their patient. Studies have shown that patients will be interrupted by their doctors within the first 18 to 24 seconds into their visit.
More often than not, a patient is rarely viewed as a whole person and becomes lost in a highly subdivided/ specialized healthcare system, and is thus considered as a series of separate symptoms and events. Hence, it is very easy for a doctor to miss the bigger picture or to overlook key aspects of a patient's overall condition.
As the evidence of an extensive work-up grows—when one's medical file starts to thicken—a patient stands a much greater chance of not being heard, even when new and different symptoms are being reported. He or she may also end up with a "functional" diagnosis. This is a euphemism, in clinical medicine, meaning "psychosomatic".
The fact is there will always be individuals who just happen to be sicker than others and generally, most doctors are not overly enthusiastic about working on complicated cases. It is not unusual for doctors and other medical staff to develop personal bias about certain patients. They may view these patients as neurotic and anxious and find that they overwhelm doctors with too many symptoms or complaints being presented at one time. Consequently, doctors find it difficult to distinguish new symptoms from those attributed to established conditions. [N.B. - This is not meant to be a criticism of patients who have multiple health problems, but a "reality check" that this may be the impression they are leaving doctors, just because they happen to sicker than other individuals].
What's worse, and what can have dire consequences, is something referred to as "diagnosis momentum" —when one doctor makes a particular diagnosis (even if it lacks adequate medical evidence) which then gets passed along to his or her peers. Such a diagnosis will likely discourage other doctors or medical staff from looking at anything else and may also limit dialogue with a particular patient.
An example of how a diagnosis can follow a patient and even jeopardize a patient's life was the case of a young woman diagnosed with irritable bowel syndrome (IBS). Her symptoms persisted, but no matter whom she saw at the local ER, they all concluded she had been adequately worked up for IBS and was sent home. The problem was no one bothered to think about what else it could be, for it was assumed each time she came in, it was for IBS. The error was finally realized when this patient collapsed and was rushed back to the ER with a ruptured ectopic pregnancy.
Mistakes leading to an incorrect diagnosis can also result from tests, like x-rays, MRI scans or other diagnostic tests, used to rule out certain problems or to check for evidence of certain illnesses. Some doctors will not examine patients closely nor gather enough medical history because they have started to greatly rely on test results to make the diagnosis for them. What is often overlooked is the high volume, limited time, and fast pace with which these tests are read and interpreted.
For example, radiologists may accidentally skip over a few frames while viewing images and thereby, miss something. Some may stop searching / checking for other things, once a primary problem has been detected.
There are more safety checks in place over recent years when patients go in for scans or lab tests to verify their identity, but occasionally a test might end up being mislabeled with another patient's name. That is why it is so important for doctors to obtain adequate information about their patient rather than to depend so much on test results-he or she could pick up on something that would seem unusual for a given patient.
Technological advances allow for high-resolution, highly detailed views of organs and parts of body, like never before, but this capability also creates unique problems. A single study may return numerous anomalies and make it difficult to correlate the right symptom to the right finding. There tend to be differences in the terms used by radiologists compared to clinicians, thus making a misinterpretation possible. Therefore, the conclusions and diagnosis are often thought to be in the "eye of the beholder".
Dr. Groopman's advice to patients and their doctors is to work towards changing how problems are evaluated by asking open-ended questions, such as what else could the problem be, whether there is something that doesn't fit the initial diagnosis (or suspected problem), or if there could be more than one problem. Patients are encouraged to bring up their family history and /or other concerns they may have about being diagnosed with a particular illness (like what would be the worst-case scenario for someone's unrelieved symptoms). These sorts of questions are ways to promote better dialogue and a broader examination of the possibilities.
However, better dialogue requires better listening. In addition, Dr. Groopman urges doctors to be more careful when prescribing new treatments or medications, so that patients understand how to use what they've been prescribed, know the dose and how often to take it, know other things that could affect its outcome, and are able to recognize and report the side effects. It is important to keep in mind that not all patients will have the same reactions.
If, or when, a series of treatments or medications have been tried for a reasonable period of time and there is no improvement or even a worsening of symptoms, then the initial diagnosis should be reexamined. Patients should be asked to start from the beginning, describing how the symptoms first started and reiterate everything else about a given problem and the doctor, in turn, should listen for new clues and take a new direction in the treatment approach. If the diagnosis or condition relies heavily on test results, then it may be necessary to repeat the test in case of inconsistencies in how it was done, how the equipment was calibrated and/or any other errors that may have occurred during test interpretation.
As in any other profession, doctors will develop different styles in how they interact with others, so not every physician will be the right one for each individual. Dr. Groopman is a strong advocate for good partnerships between doctors and patients, as this approach will promote the best care and medical decisions.
Numerous other factors that may influence medical decisions were not included in this synopsis (for the sake of narrowing down the scope of the review), like the allure of pharmaceutical marketing, extensive advertising in medical journals, promotion of products through healthcare practitioners, flashy advertisements geared to consumers and the role of money in the medical field.
The author of the book, Dr. Jerome Groopman, is a physician who has devoted more than three decades to clinical care and cancer and AIDS research. More recently, he has extended his research into genetics and cell biology, particularly in the development and growth of breast cancer. Dr. Groopman holds the Dina and Raphael Chair of Medicine at Harvard Medical School and is Chief of Experimental Medicine at Beth Israel Deaconess Medical Center. His previous books have addressed the value of second opinions and followed extraordinary patients who sustained hope during difficult circumstances.
This, his most recent book, How Doctors Think, is highly recommended for the insight and practical information it communicates through numerous patient cases. The paperback version is published under the Mariner Books series, by Houghton Mifflin Company, Boston, MA, 2008. ISBN-13: 9780547053646.
Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.