Do Specialists Listen to Patients?

By Wayne Persky

​As microscopic colitis (MC) patients, many of us would insist that the gastroenterologists with which we've had appointments devoted precious little attention to many of the symptoms we described. We get the impression that most gastroenterologists still prefer to think of MC as a nuisance disease — just a little diarrhea. And despite all our descriptions of the abdominal pains, joint pains, brain fog, fatigue, and various other symptoms that make life so unpleasant during the day, and prevent us from sleeping at night, if our gastroenterologist acknowledges any of those symptoms at all, he or she typically does so while recommending that we see a good psychiatrist. The disconnect sometimes seems so bad, that we may be surprised that we actually received a correct diagnosis.

Are specialists really experts, as their state's certification attests?

Do the state certified medical "experts" in other specialties follow the same modus operandi? We can only speculate, because to date, published research is scarce . However, an article was recently published regarding specialists who diagnose Neuropsychiatric Systemic Lupus Erythematosus (NYPSLE). NYPSLE is poorly understood, and difficult to diagnose (does that ring a bell), and it's diagnosed and treated by neurologists and rheumatologists. In this particular study, published in the journal Rheumatology, researchers analyzed how clinicians prioritize the evidence on which they base a diagnosis, from a 13 item list (Sloan, et al., 2023).[1]

Actual diagnostic criteria varied widely among clinicians.

​The study showed that clinicians assessments of SLE patients symptoms varied widely, with a high level of uncertainty. 46% of patients reported that they were either rarely, or never asked if their SLE was flaring, and 24% of them reported that their own assessment of their disease status was rarely, or never in agreement with their clinicians.

In a recent online Medical Xpress article, the researchers discussed how fewer than 4% of the clinicians in the study ranked their patients' opinions in the top three (out of 13) evidence categories. Even though the clinicians were aware that neuropsychiatric symptoms are typically associated with a low quality of life, and can lead to premature death, and such symptoms are more likely to be misdiagnosed, they still ranked their own opinions highest, acknowledging that they tend to have a low level of confidence in diagnoses that involve invisible symptoms, such as headache, hallucinations, and depression. Obviously, it could certainly be argued that this is clearly a biased attitude.​

Does certification as an expert exempt a clinician from good manners?

One patient in the study pointed out how "degrading and dehumanizing" the experience can be when a clinician ignores a patient's symptom description. In that patient's own words,=

If I had continued to have regard for clinicians' expertise over mine, I would be dead. When I enter a medical appointment and my body is being treated as if I don't have any authority over it and what I'm feeling isn't valid then that is a very unsafe environment. I'll tell them my symptoms and they'll tell me that symptom is wrong, or I can't feel pain there, or in that way.​

Many of us can identify with that patient.

Somatization and bias are the source of the problem.

​Somatization involves the conversion of a mental state (such as depression or anxiety) into physical symptoms. Despite the fact that psychiatrists (and sometimes other practitioners) seem to diagnose patients with issues such as depression, anxiety, and other neurological issues at the drop of a hat, descriptions of the symptoms of such neurological issues by IBD (or other autoimmune patients) to a gastroenterologist, or some other specialist treating a different autoimmune disease, often fall on deaf ears. This suggests that in the eyes of most specialists, it's okay to have depression or anxiety is a separate issue, but it's not okay for patients to have such issues in association with an IBD or some other autoimmune disease.

Gastroenterologists have traditionally only dealt with physical symptoms.

​So it's not surprising that they (similar to most specialists) would resent the implication that many, or most autoimmune diseases also cause clinical symptoms that are not included in the official medical descriptions of the diseases that they normally treat. For example, gastroenterologists resist recognizing neurological symptoms, that the patient claims to have, primarily because gastroenterologists cannot verify the symptoms with their normal diagnostic testing methods. Most specialists would prefer to deal with disease symptoms that are "well behaved", and are entirely within their area of specialization, simply because it makes their job much easier.

And the reluctance (or refusal) of specialists such as gastroenterologists, for example, to consider neurological issues as symptoms specifically due to gastrointestinal disease, surely adds to the neurological issues (especially depression and anxiety) of their patients. The point is, if the neurological issues are part of the symptoms of an IBD, a patient shouldn't have to go to another specialist in order to get the rest of the diagnosis.

In the U.S. healthcare system, everyone wants to be a specialist.

​The medical community has evolved into a system that sends patients from one specialist to another during the diagnostic process, so that all the specialists get a piece of the pie in the form of a big boost to their bank account (at the patient's expense, of course). Whether Medicare, insurance, or the patient pays for this, we are all paying for it, one way or another. There are no free lunches. That's just one of the reasons why healthcare in the U.S. is the highest priced in the world, and it has one of the lowest patient satisfaction ratings among the developed nations

All this added churning during diagnosis surely causes more depression.

​As patients are handed from one specialist to another, the clock keeps running, and after waiting months to see each successive specialist, getting the final diagnosis (or diagnoses) can sometimes take years. Empathy for patient suffering apparently means little to most specialists, and to the healthcare system in general. If the healthcare system was actually concerned about patient well-being, it would provide a prompt, accurate diagnosis, and treatment would be quickly begun. In the current arrangement, prompt treatment only occurs for the simplest of health issues.

References

1. Sloan, M., Andreoli, L., Zandi, M. S., Harwood, R., Pitkanen, M., Sloan, S., . . . Pollak, T. A. (2023). Attribution of neuropsychiatric symptoms and prioritisation of evidence in the diagnosis of neuropsychiatric lupus: mixed methods analysis of patient and clinician perspectives from the international INSPIRE study, Rheumatology, kead685, Retrieved from https://academic.oup.com/rheumatology/advance-article/doi/10.1093/rheumatology/kead685/7473364?login=false#