#121 Should You be Reading your Medical Record?
Yes, but get prepared
I met a lady named Phyllis on a recent trip abroad. She wanted some advice on a result of a laboratory report posted directly into her medical record. She and her husband became quite alarmed when the result of her urine culture reported “ESBL” bacteria. They looked up that term and read scary words like sepsis and hospitalization. Before being able to reach her doctor, these people were understandably anxious and frightened.
ESBL (Extended-Spectrum Beta-Lactamase) infection is a form of bacterial infection caused by bacteria strains that generate enzymes that renders many any routinely used antibiotics, including penicillins and cephalosporins, ineffective. The significance of the presence of these types of bacteria and what antibiotics can be used to treat a possible infection, are determined by another study called the sensitivity report.
When the light of day arrived and they could reach her personal physician who ordered the study, their questions were answered and a widely available oral antibiotic was used to treat her urinary tract infection. Phyllis responded to the medication and was able to enjoy a rigorous trip abroad.
She and her husband wondered, and rightly so, was it a good idea to put the “raw material” of their lab tests and medical studies directly into the chart without explanation? It’s a good question that folks have been pondering since the practice of giving patients full access to records began over the last few years.
How do Doctors Think?
To understand how notes are entered into a chart, It is helpful to understand the way physicians go about making a diagnosis for their patients. A physician takes a thorough history and, hopefully, listens to the patient talk about the symptoms they report of their current illness. Combined with a physical examination, the physician formulates a differential diagnosis of what she believes may be causing the patient’s illness or injury.
The general approach taken by physicians, is to rule out the worst and most immediately life-threatening diagnoses first. Likely, those less-serious diagnoses, can wait a short while before their diagnosis and treatment begins. It would be ideal to have immediate diagnosis and treatment on all diagnoses but that is unrealistic and not always possible.
There are also, lurking somewhere in the world, are the less common diagnoses that physicians call zebras. These are rare diseases that can present with nonspecific signs and symptoms that are seen so infrequently, they are often overlooked. The phrase is used on medical rounds when the attending physician teaches his students, “When you hear hoofbeats behind you, look for horses, not zebras.”
That saying is taken to mean that trainees should look for the expected cause of illness first, rather than searching out something more exotic. Common illnesses are still the most common. Some physicians choose to treat the common diagnosis first. If they are right and the patient gets better, usually aided by the passage of time and the body’s natural healing processes, case closed.
If the patient gets worse or does not get better, then the search commences for the more uncommon diagnosis. In her 2020 TEDMED talk, Whey We Need Medical Diagnosis Detectives, Yale University author and internist Lisa Sanders, advocated for another separate specialty within internal medicine for the more than 30 million Americans suffering from rare diseases. She notes that it takes an average of 6 years to unlock these diagnoses.
Physicians tend to look for evidence of common illnesses that they know how to treat. They tend to ignore evidence that goes against the diagnosis they believe they have detected. Litsa Dremousis, a 52-year-old woman, published a column in the Washington Post retelling the story of how she presented to the emergency department with signs and symptoms of advanced thyroid cancer. The author retells the story of how a physician assistant misdiagnosed her condition as bronchitis.
The author questioned how medical staff members could have missed such a serious and relatively common illness. The answer, of course, was that they were likely never expecting to make the diagnosis of thyroid cancer in the emergency department. They are expecting to diagnose and treat acute illness. Thyroid cancer was never even in their mental list of differential diagnoses. One cannot find what one is not looking for.
Seeing the Word Cancer on your Chart
Somewhere in every differential diagnosis list that a person will read in his or her medical record, is a form of a tumor or cancer process. Have a headache, could be a brain tumor? Have abdominal pain? Rule out cancer growing in the pancreas. If an informed patient reads the doctor’s assessment or the radiologist’s reading of an X-ray or CT scan, he will undoubtedly read the word: cancer, mass, or malignancy. Without proper context or explanation, a person could quickly enter a state of high panic and anxiety.
X-ray studies are not nearly as definitive in the detection of bone fractures as the public might think. The ribs, the hips, and some curved bone fractures can be difficult to diagnose on plain X-rays. The reading on these studies will always include language that includes some hedging that sounds like: clinical correlation is required. In other words, a physician must correlate the study findings to the symptoms and signs of the patient she is evaluating.
Another issue I have noted along these lines are the findings reported on an X-ray that are not normal, but usually not a sign of serious illness. One angry young lady reported on social media, that her doctor had failed to notify her of an abnormality that was read on her chest X-ray. She complained that she was not told that she had atelectasis (at-uh-LEK-tuh-sis). She was indignant.
Atelectasis is the collapse of a lung or part of a lung. It happens when tiny air sacs within the lung, called alveoli, lose air. For most people who are not otherwise ill, it is seen when they do not take a deep enough breath during the time that the chest X-ray is taken. In some cases of infection or tumor, atelectasis can be a sign of a more significant illness.
The usual follow-up for a well person with atelectasis is a repeat chest X-ray at some later time, when care is taken to take a deep breath when the image is taken. The physician reporting her results to the lady complaining likely thought the initial finding of atelectasis was not clinically significant. It was thought to be not related to whatever medical condition that she was being evaluated for.
Not all abnormalities noted on X-rays or laboratory tests are significant. Some abnormalities need to be monitored to know if they will become a problem. For example, various conditions and medications cause fluctuations in one’s potassium (K) level. A very high potassium level can cause instability in heart function.
One common cause of high potassium levels on testing, is the way the blood sample was collected. If the sample contains blood cells that ruptured during the blood draw, called hemolysis, the potassium level can be falsely elevated. There is too much potassium in the sample but the test is not measuring what is intended. The patient may need a repeat test to confirm whether the first reading was accurate. Understanding this issue and how to handle it takes knowledge and experience.
Radiologists and pathologists who read biopsies, need to be thorough and to, as they say, cover their asses medico-legally. The language of the chart generally reads that some form of cancer must be excluded (ruled-out) and further studies may be necessary to exclude malignancy. This language that is self-protective for the physician is highly provocative and frightening for the patients and their families.
Let me sidetrack a moment to say that the X-ray equipment and technicians at many storefront urgent care centers are not up to the high standards used at hospitals and free-standing emergency departments. I know because I have worked at a few of these facilities at various times in my career. There may be a nurse or aide trained in a cursory way to take X-rays. No radiologist is on site to read the images. At many facilities, no physician is on-site at all.
Understanding the Language Physicians Use
In an insightful article in The New Yorker, The Curious Side Effects of Medical Transparency, noted author and internist, Danielle Ofri, discusses the effects of having physician notes and test results available to the patient and their family members even before the physician gets to read and review them. Rather than set off alarm bells and anxiety attacks in her patients, even the thoughtful and lyrical Dr. Ofri has found herself making drastic edits in the differential diagnoses she places into the record.
For a patient with abnormal low blood cell counts, rather than alarm the patient with the exact medical diagnoses in the long list of scary diagnoses, she conceded. She knew her patient would be reading the doctor’s note. Previously, these notes were only used to document information for future visits and among other medical professionals. For a note to be read by her patient, Dr. Ofri elected to say that she would be doing an anemia evaluation. Those words are not inaccurate but they are not precise either.
Physicians use medical terminology in their notes to convey accurate information to other medical professionals who will be using the medical record to treat the same patient. Complex medical terms are preferred over lay-person’s language that, although more understandable to our patients, are less specific. For example, a note containing the diagnosis autoimmune hemolytic anemia (AHA), a group of autoimmune disorders where the immune system mistakenly attacks and destroys its own red blood cells, conveys more information that the words “low blood count.”
For this reason, person without a medical background will need to look up many of the words that they find in their medical record. One needs a reliable medical reference. Additionally, the words in the chart still represent the thoughts of the one person typing or dictating them. That person’s impressions can be incomplete or inaccurate. The notes may contain descriptions that may seem very subjective, not factual.
I wrote about this issue in “Why did My Doctor Say this About me?” and I reminded healthcare professionals to be more careful about the words they wrote and dictated into their medical notes. My friend Susan, who was undergoing treatment for advanced leukemia, questioned me about the comments about her appearance that appeared within her doctor’s dictated note.
I explained that those comments, such as “well-groomed,” were the physician’s messaging to those who would read the notes after him, about her mental status. Presumably, one must be functioning at a fairly high level to put on a clean outfit, comb her hair, and apply makeup.
Often, negative messages are also conveyed in the nurses’ or physicians’ notations. In one memorable episode of the TV comedy Seinfeld, Elaine Benes spies that in her chart, she has been called a “difficult patient.” She is rightly insulted and annoyed at the characterization as her physician seems to read the comment on the chart, then dismiss her quickly.
I have read other words like non-compliant, disheveled, drug-seeking, and belligerent in the notes of patient medical records. Labelling in this way biases the readers who follow. An impression (many times a negative one) is introduced into the minds of the healthcare professionals who follow. Those words are made worse by the concept of confirmation bias.
Confirmation bias is the tendency to look for evidence that reinforces thought and opinions that we already hold. We ignore signs and symptoms that do not confirm our beliefs. If a patient has been introduced as someone who is non-compliant the nurses and physicians will find all the evidence for how the patient has not been following directions and ignore all the evidence of his behavior that adhered to the plan.
Inappropriate terms in the Record
Terms and labels charged with negative judgement and disapproval can affect how a person is treated. Labelling a person by their visit frequency (ie- frequent flier) or most obvious diagnosis (ie – alcoholic) will put a hard stop on the curiosity needed to look for another reason for a new sign or symptom. All those labels dehumanize the real people who have chronic illnesses or tend to over-utilize the emergency department.
When physicians assume that they already know the reason why a person has a cough or abdominal pain or stopped his medications, they will stop looking for the true causes. Physicians need an open mind to make difficult judgements as to which tests to order and which abnormalities are clinically relevant.
When faced with confusing laboratory study results, going back to the professional who ordered it is the best source of information about how the results impact you. Every hospital system and most offices have a nurse question line or a way to message the physician with questions. Waiting for a response may take a great bit of patience. What seems like an emergency to you, may take the staff a day or two to respond too, particularly after regular hours.
Understandable online references are available through your computer search engines. Those associated with some of the major medical centers such as the Mayo or Cleveland Clinic have well researched and comprehensive information portals. Beware of sites that purport to be informational but actually are trying to sell you a quick cure or program.
Some Words are Tricky
The language of the medical professionals can be hard to understand even when plain English is used. An early pregnancy that is at risk is termed a “threatened abortion.” The inefficiency of the pumping action of the heart is referred to with the ambiguous term “heart failure.” The definitions of words vary greatly from a conversational understanding to the understanding of the medical community.
Some words are so highly charged, for example, that professionals shy away from using them. The word lethargy, for example, when applied to an infant has a serious meaning that may trigger a full septic work-up including the insertion of a catheter to obtain urine or doing a spinal tap to test for an infection of the central nervous system.
The term lethargy is defined as a pathological state of sleepiness or unresponsiveness and inactivity. Was the infant seen at his usual nap time? Does he or she awaken easily? If the baby awakens and responds appropriately, different word other than lethargic should be used in notes on the chart. Medical professionals are taught to use actual symptoms and objective information in their charting.
Some controversy enters the discussion when it comes to discussions of body weight and labels used in describing patients. Terms like “overweight” and “morbidly obese” are vague and can be hurtful when read by a patient. There may be some valid clinical reason for the mention of body habitus or body weight. Although BMI measurements are not perfect, they at least give some objective piece of information that can be monitored and understood.
The physicians are generally trying to convey a “picture” of someone as well as a paragraph or two that documents the medical exam and findings. Describing a person as unhoused or unkempt, can convey useful information about their ability to obtain medications, keep wounds clean, or attend follow-up appointments.
Descriptions of a person’s appearance is highly subjective. One person’s disheveled is another person’s casual. My father got quite a bit disheveled near the end of his life. A family can glean quite a bit of useful information about their loved-one from gaining access to their record. (The patient must grant permission.)
What should be done if there is any language or labels that a patient or family member finds incorrect or offensive? A question can be made directly to the physician about the meaning of the words or comment. If that does not satisfy, for hospital-based professionals, an inquiry can be started with the patient advocate for the hospital.
Disputing the Record
It is difficult, but not impossible to amend an electronic medical record. For one issue, to save time, subsequent users of the medical record take shortcuts and import parts of previous notes. Because of the re-use of notes, an incorrect or faulty description or diagnosis can linger forever in the electronic medical record.
If some explanation or satisfaction is not reached on the direct or local level, there are more remedies. Depending on the nature and severity of the issue, state medical boards have hotlines for citizens to lodge complaints. These calls may lead to a useful investigation of the issue.
Finding objectionable comments may be a clear sign that one needs to find another healthcare professional. Someone might be having a bad day but then again, some doctor or nurse might be hopelessly cynical or biased. Patients and their families need to advocate strongly for their rights and opinions on how they want to be treated.
By getting online access to the electronic medical record, you can get immediate access to the results of tests and to the actual notes written by doctors and nurses providing care. The place to start making collaborative decisions with the medical team to read and to understand all the documentation.
Some people may choose to wait for the explanation from their physician before reading their results. The effort made to understand the electronic medical record will empower patients and their families to correct the record and to make more informed medical decisions.
