Guys, this isn’t a recipe, but it is something I have seen put into words that reflects a large gaping hole I have noticed in our care system. This post has a common theme of lamenting this idea of putting patients into diagnostic boxes, even when they don’t fit. And, unfortunately, when the patient doesn’t fit into the box, it seems that doctors attribute any lack-of-fit to a psychiatric problem of the patient rather than a lack of knowledge on their own part.
As I have been studying Mast Cell Activation Syndrome, fibromyalgia, EDS and other hypermobility syndromes, this theme about how our specialty-driven medical system is set up to fail these patients keeps coming up. I think it ends up failing most patients, if you really think about it.
Harry Hickam, MD, while on teaching rounds at Duke University, admonished his students and residents that “Patients can have as many diseases as they damn well please!” ... He correctly posited that when diagnosing the individual patient, using Occam’s razor often provides the correct diagnosis. More often than we would care to admit, though, when dealing with a patient with a perplexing constellation of signs and symptoms, it can provide the wrong one. In fact, overreliance on Occam’s razor can be downright dangerous for patient and physician alike. Often, the simplest, or in the case of medical diagnosis, the most common, illness is exactly what is causing the patient’s symptoms. But sometimes, in our almost obsessive desire to make the diagnosis, simplicity is our enemy. In our haste to make the patient fit the diagnosis, we get it wrong. - Atlas of Uncommon Pain Syndromes by Steven D. Waldman, MD.
The system that gives primary care the least amount of time per patient, the least pay for time spent, and the specialists the most time and money is completely backwards. It promotes this idea that primary care should refer everything for a procedure or test to fit all their patients into a box, rather than listening to their patients and assuming not everyone fits into a diagnostic box. It forces primary care into the box of a referral center rather than a place to tie everything together, frustrating doctors and patients alike.
This is a quote from a GI doctor on this podcast dedicated to these conditions (Bendy Bodies) because his search for answers for his patients led him into this musculoskeletal field: “When you’re talking about any one disease that has multiple disciplinary activities that shows up in multiple parts of the body, it’s very difficult for a specialist to think outside of the box and get away from their GI box where they’ve got reflux problems- do an endoscopy. Abdominal pain- do an endoscopy. Change of bowel habits- do a colonoscopy. Unfortunately, people are taught to stay within their own box, and not look outside. That’s a big problem- we just don’t have a course in med school about multidisciplinary approaches.”
Another theme-based quote from Disjointed, edited by Diana Jovin: “The design of the medical system with its siloed specialties works against patients who need physicians to look at issues that cross organ systems in a complex way. These silos make it difficult not only for physicians to see the bigger diagnostic picture, but also place the burden of overall management of the patient on the patient, who may already be suffering from symptoms such as fatigue and brain fog and may not have the time or energy to figure out what’s needed next.”