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You are damaged.
Do words matter?
Does how a physician or provider gives you information make a difference in how you interpret it?
I spent 4 years in medical school, 4 years in internship/residency, and 1 year in fellowship to learn how to diagnose and manage musculoskeletal injuries. In the process, I had to learn essentially a completely new language describing medications, anatomy, and diseases also known as medical gobbledygook. However, medical gobbledygook is only understood by maybe 10–15% of the world’s population! When I started practicing medicine, I would use these words (i.e. degenerative disc disease, tendinopathy, stenosis) when talking to patients. I admit “talking medical” made me feel competent and I thought that it would impress patients. I worked hard to learn them so why not be proud to use them, right? Then I had this interaction:
Me: According to the radiology report, you have lumbar degenerative disc disease (DDD). However, DDD is normal for an aging spine. Fortunately, you have many treatment options for your back pain.
Patient: So you’re saying I’m screwed?
I thought to myself, I didn’t say that at all. Or did I?
The impact of what clinicians say to patients is undervalued. One of my favorite articles discusses this topic. The authors go into specific patient examples that made a big impact on how to talk with patients.
US medical schools are required to include courses in their curriculum on how to communicate with patients. It was a couple of lectures but I honestly did not get much out of it. In the volume of things to learn (i.e. pathology, physiology, etc), I knew my ability to communicate was not going to be on the tests that mattered at that time. However, I am fortunate that communication has always come natural to me. From my own personal experience, physicians have some special challenges when it comes to communicating. Perhaps it was a skilled we never learned. We tend to be bookworms often trading social opportunities for studying. Medical training can be very isolating. The years of studying and working long hours can make us socially inept. Lastly, our clinics are packed and unforgiving. In a busy clinic, we are challenged to be empathetic, complete, and concise in a 15 minute visit where we are already 30 minutes behind schedule.
I’m not letting myself get off the hook though. Clinicians need to be more aware of the words we choose and how we deliver them. What we learn in medical school is completely foreign to most of our patients. The typical human reaction to things that are foreign is fear.
“The tumor we found on your back is a lipoma. It’s benign so I would not worry about it.”
Even the word “benign” which physicians often use to describe something that’s inert or irrelevant sounds scary!
In the pre-Internet world, these terms were not accessible and people counted on physicians and healthcare providers to interpret what they meant. Now with Dr. Google, Instagram, and Facebook information is EVERYWHERE! The quality of the information ranges from good to horrible.
As health care providers we need to provide accurate, honest, but a digestible form of education for our patients. We need to be aware that these foreign words often carry fear and uncertainty. We also need to be wise about ordering tests and labs that create more foreign words!
For example, check out these MRI reports:
Patients have a right to their medical records and I’m glad that it’s becoming more accessible. However, an unintended consequence is patients are trying to make sense of the word salad. As they search online for each term the further they go down the rabbit whole and anxiety goes up. Physicians know these reports are written for us and not for patient consumption. So as information becomes more accessible more caution should be taken. I will often write “MRI LUMBAR SPINE RULE OUT DISC HERNIATION.” A patient might see my order on the MRI report and read the word “BULGE” (like above) and conclude on their own that they have a disc herniation. Patients do not always understand the nuances of how orders have to be written/coded for tests to be authorized. This is another reason to be careful about what we say and the tests we order since they are subject to patient interpretation. Patients frequently bring in their own copy of the MRI report and I go over the highlights of what I think is important. As I go over the “benign,” I sometimes get the sense that the patient thinks I’m hiding something from them or being dishonest. I frequently prepare patients on what the tests will likely show prior to ordering tests (i.e. fraying, bulging, etc) and reassure that these findings are normal for aging. Even then I can still feel that patients are uneasy with the words on the paper.
As medical innovations continue, diagnostic imaging is able to see and evaluate things we have never been able to appreciate before. Advances in technology are challenging our understanding of both normal and diseased states while triggering more questions. Fancy tests often create fancy reports and it’s the medical professionals responsibility to explain some of these “findings.” Are these findings significant? Why are they there? If they are not significant, then why did the radiologist even comment on them? Scientists and clinicians struggle to make sense of this for themselves but also for the patients. When you go to the doctor, you expect an answer which is a lot of pressure. The truth is a lot of pain syndromes do not have a clear cut answer. Back pain is one of the largest causes of disability in the world. The cause of back pain has been pondered and researched for decades but we still can’t adequately answer “why.”
Clinicians and scientists are then left to theorize to fill in these gaps. A common explanation is the “misalignment” theory where pain is present because segments of the spine are not moving normally and subsequently causing “dysfunction.” As a matter of fact, I can come up with some very elaborate and science based explanations for why you hurt. However, I will be the first one to tell you at BEST it’s an educated guess and that science has not proven my explanation. For patients this is a tangible explanation of why they hurt which is why I think it’s easy to believe. The biomechanical model of disease is the most common theory taught to clinicians and the easiest to believe by patients.
Bone is broken…put a screw through it!
Bone is too long…cut it!
No joint there…put in a new one!
Now obviously this model applies well when there is obvious anatomic deformity such as a fracture or dislocation. However, when there is pain and imaging studies are “normal” the cause is unclear. It is a common practice to theorize that the area may be “too tight” or “out of alignment.” However, this model of thinking widely practiced by clinicians has EXTENSIVE research refuting these claims! I am not saying that manual treatment of the spine has not helped people. However just because the treatment works does not mean that the theory behind it is true. I cringe when I hear words like “subluxed”, “bad disc,” “malaligned,” “one leg is shorter,”etc. These are often very loaded words and can have a negative impact on the patient’s perception of themselves. But its a digestible model for both the patient and clinician. In this excerpt, Darlow and authors reference a particular subjects belief that his spine was “out of alignment:”
When [the current episode] first happened, the only thing that was going through my mind is the seriousness of my dis-alignment [sic] of my back…. I was really petrified…you get scared in the sense that you could damage your spinal cord, or anything, to such an extent that you might become paralyzed (Patient 9).
Another common way to explain injuries is that pain is a result of “weakness of the core.” The assumption is that if they were “stronger” then the pain would have never happened. Are we saying this guy on the left should not have back pain because he has a strong core? Strengthening the “core” can make you stronger but has not shown to be protective against back pain. However, the idea of being weak again is a tangible and scalable explanation but can have unintended takeaways. Here are some other examples from the article by Darlow et al.
Basically all I’ve kind of been told to do by physios is to work on my core…I’ve been tested by various different physios, and Pilates, and I’m apparently ridiculously weak….I had an abortion because I didn’t think I could have a baby. I didn’t think I could handle it…carrying it, and having extra weight on my stomach (Patient 11)
Of course this is only half of the story since patients have a big role in how they interpret medical information. But that’s for a separate article. Clinicians need to find effective ways to communicate to patients. Even with an excellent communicator, how patients interpret medical information is subject to a variety of influences. Unfortunately, there is no special formula I can give you that applies to all patients. Presenting facts is what doctors are good at. However in today’s society, presenting facts is simply not enough to reassure patients. Empathizing and understanding the patient’s goals is a lot more powerful than teaching them medical gobbledygook. The only advice that I can give to my fellow clinicians is to be mindful of what we say because words do matter.
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