‘This man knows his body — he’s had these symptoms many times before. He’ll tell us when he feels back to normal,” reassured the senior attending doctor on our team. He had known the patient for years. Mr. R had come in with a bowel obstruction, a condition he had suffered from innumerable times. He knew when he was starting to have one, and he knew when he was starting to get better — one might say he was in some ways his own doctor. “I’m feeling a bit better today, docs,” he explained when we were at the bedside. “But I’m not quite ready to try eating yet. I think I’ll be there tomorrow.” We exchanged a few words, did a physical exam, and continued our rounds. After leaving his room, the fellow on our team said, “Wow, he sure knows a lot. Is he a doctor?” Our attending responded, “No — he’s a patient.”
Over the last couple of years, I have realized that I will never experience what it’s like to have most of the conditions that I treat. In medical school, we are trained to say, “I can’t imagine how that must feel,” to empathize with our patients, but the truth is we don’t know what it’s like at all. Most new doctors are in their late 20s to early 30s with little to nothing on their medical records. The reality is that patients often know their diseases better than their doctors do — at least at a visceral level. I may be able to describe the pathophysiology of disease or the therapeutic effects of different drugs. But only the patient knows how it feels to suffer from a rheumatoid arthritis flair; what it’s like to have recurrent debilitating migraines; how painful it is to have one’s stomach completed bloated, unable to eat anything or to go to the bathroom during a bowel obstruction. I have treated all of these conditions, but I certainly do not know what it is like to have any of them.
The denial of patient symptoms by doctors and medical staff is not a new practice but is very detrimental to clinical care. Many studies have suggested that doctors underestimate the severity of their patients’ physical symptoms. One study looking at cancer patients showed that the symptoms of fatigue, muscle cramps, and musculoskeletal pain were underestimated by doctors nearly half the time. In another study, doctors underestimated pain severity in HIV patients over 50 percent of the time.
There are certainly challenges with treating according to symptoms alone, such as patients who fabricate illness for alternate gain such as drugs with high abuse potential. However, doctors must often make assumptions and decisions based on limited information. This is just the nature of clinical medicine. The decision to potentially under treat real symptoms or over-treat fake or exaggerated ones is something doctors struggle with often. Our best bet is to believe our patients, unless we think that doing so could likely cause them more harm than good.
For doctors to truly change practices, they will need to see more value in listening to patients. Part of why doctors currently may not is because most of the data they rely on is in the form of numbers, graphs, images and the like. The days when the medical axiom, “Listen to the patient- he is telling you the diagnosis” was widely accepted and appreciated seem to be giving way to ones where doctors are stuck behind screens rather than at the bedside. Medical school curricula are the first place where we can systematically begin to address this. As much as we have courses on physiology and pharmacology, so to must we have teaching on active listening and effective communication. The concept of active listening was introduced by psychologists Carl Rogers and Richard Farson in the 1950s, and its application is essential for medicine. More than just listening, Rogers and Farson urged that we “get inside the speaker” and convey that “we are seeing things from his point of view.” While this teaching is a regular part of psychology curriculum, it is not yet the case in medicine.
It is also prudent to point out the clinical value in listening and make this apparent to medical trainees. The patient’s personal experience with disease is immensely helpful in diagnosis. We rely heavily on how a patient feels when we are trying to solve a clinical case. We commonly ask if a certain presentation of a disease feels like a past one: a patient with chest pain who has a history of both a heart attack as well as gastroesophageal reflux disease (GERD, or “heartburn”) can guide us diagnostically if he says, “This feels much more like my GERD than my heart attack.”
On the contrary, patients who are altered, confused, or sedated are black boxes until lab values and imaging studies return to help fill in the picture of what is going on. In one past case, we had a patient who came in with an infection of unknown origin but was too sick to communicate. Unfortunately, no one had looked in her ears (it’s common not to do so unless someone complains of ear pain). When she started to become less altered after receiving antibiotics, she was able to tell us how much her ear had been hurting, and a severe ear infection was diagnosed and treated.
Similarly, patients can and do often guide the treatment of their diseases as well. Musculoskeletal and neuropathic pain managements are obvious examples, and we often treat according to how well a patient says their pain is being controlled. There are no lab values that can tell us this — only the patient themselves. This is true for life-threatening conditions as well. For instance, determining whether a heart attack needs to be urgently catheterized depends in part on if a patient’s chest pain is refractory to medical treatment. Patients often guide the use of urgent interventions, such as shocks or electrical pacing, if they have symptoms. When treating a patient in a dangerously slow or fast heart rhythm, the management largely depends on if they have light-headedness, chest pain, blurred vision, or dizziness, all of which call for more intense and urgent interventions.
While most doctors have not suffered the symptoms of their patients, there certainly are some who have. For many of these individuals, their ability to actually feel the consequence of disease is what led them into medicine. For others who experience disease once their careers have started, they often comment on how different the experience of being a patient is from being a doctor. There is an entire dimension of disease that we as doctors never feel, yet we see it right in front of us every day. It is humbling to acknowledge that we may never truly know a side of medicine that our patients do, and it is all the more reason to take patient symptoms seriously.
It is not surprising that our fellow was quick to assume the patient was a doctor or had any professional background other than being a long-time patient. But this speaks to the larger underlying issue: Doctors don’t always value the experiences that patients are having. Today’s doctors are quite primed to examine mounds of data at computers and less attuned to hearing what their patients are feeling and experiencing. We need to be sure to listen carefully and take our patient’s symptoms seriously.
Dr. Abraar Karan is an internal medicine resident at the Brigham and Women’s Hospital and Harvard Medical School. He is also a columnist at the British Medical Journal. Follow him on Twitter @AbraarKaran