Managing Doctors' Assumptions About a Chronic Condition

From The Floor

Managing Doctors' Assumptions About a Chronic Condition

Seeing the forest for the trees

By Genevieve M. Clavreul, RN, Ph.D.
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As a nurse, I’m all for patients completely and candidly disclosing any and all medical conditions. As a patient, I’ve also learned the hard way that the minute you let physicians or nurses know you have a chronic condition, you face a new problem: convincing those healthcare providers that you are not defined by that condition.

I’ve wrestled with that problem most of my adult life, a challenge that is often akin to hitting my head against a brick wall. I’m diabetic and have been since my first pregnancy. As soon as my healthcare providers know that, it becomes a constant battle to remind them that not all my aches and pains are automatically a result of my diabetes.

Of course, a chronic condition like diabetes can have many consequences and it’s logical to consider it as a possible culprit of any mysterious ailment. But if doctors and nurses stubbornly refuse to consider other possibilities, a patient can be in for a world of hurt, as my mother found out in years ago.

Post-Surgical Complications

My mother was also diabetic: She was diagnosed with type 2 diabetes in her late 60s. She was very good at managing it and for years suffered no negative sequelae. Then, she was admitted to the hospital with a prolapsed uterus that required an abdominal hysterectomy and bladder suspension. The surgery was successful; it was during her recuperation that the trouble began.

My mother’s doctor was pleased with the results of the surgery, but inevitably her post-op follow-up visit was punctuated by a lengthy list of pro forma reminders about her diabetes, most of which were things she already well knew. (If you’re diabetic, you quickly become accustomed to such warnings.)

As the days passed, I noticed that my mother’s incision didn’t seem to be healing as quickly as it should and there was some redness and puffiness around the staples. I called the doctor to inform him, only to have him dismiss my concerns out of hand. “As a diabetic, she might not heal as quickly as a patient who’s not diabetic,” he said. “Be sure to get her blood sugars under control — it’ll help with the healing process.”

When the staples were removed, the incision split open. My mother paid very close attention to her blood glucose levels, which I checked and logged for her along with packing and changing her dressings. I also kept a log of the size of the wound, which still showed no signs of proper healing.

From Bad to Worse

Weeks turned to months and back to the doctor we went. I brought along my logbook, which noted each and every one of my mother’s glucose levels and the unchanged wound size, clearly indicating the lack of healing. Again, the doctor dismissed my concerns with the reminder that “diabetes can cause the healing process to be very slow.”

To my dismay, he also said he had opted not to close the gaping incision, preferring to leave it to heal from the inside out. This meant my having to place drains and packing in my mother’s wound on a daily basis, a very unpleasant ordeal for both of us. To make matters worse, not long after that doctor’s appointment, I began to notice that my mother’s wound was producing a clear yellowish discharge, albeit not the thick, purulent drainage of an infection. Something clearly was not right.

I discussed the situation with my friend Kathy, the head nurse of the PICU at a local hospital, and she and I decided to go through my mother’s chart step by step. Using our combined knowledge, we looked for possible reasons for the lengthy healing time, which was rapidly approaching the two-year mark. After our second pot of coffee, Kathy and I both honed in on one potential explanation: The surgeon might have nicked my mother’s urethra during the surgery. That was a very real possibility, since gynecologic surgeries account for more than 50 percent of all urethral injuries. If my mother had developed a fistula, that could definitely account for the delayed healing. So, why hadn’t my mother’s doctor considered that? Oh, that’s right — my mother was diabetic and everyone knows that diabetes can cause slow healing!

A Second Opinion

After discussing ways we might convince my mother’s doctor that her diabetes was probably not a factor this time, I came up with the idea of using two of my mother’s urine test strips to compare the pH and sugar levels of her urine with those of the discharge from her wound. Sure enough, the results were the same.

At this point, I wasn’t confident that my mother’s doctor would be receptive to these findings, so Kathy and I decided to present our findings to several other physicians we had worked with. After we outlined what my mother had gone through and showed them the urine test results, the doctors suggested that I schedule her for a test with methylene blue and an x-ray in order to follow the urine path. Those tests quickly confirmed that my mother had a major fistula.

Armed with this new information, we sought out a different surgeon, who repaired the fistula. Within a few weeks, the wound that had required nearly two years of packing and cleaning was completely healed and my mother could finally get on with her life. If I hadn’t been a nurse or hadn’t been as persistent or willing to argue, things might have gotten much worse.

Diagnosis is Not Destiny

As healthcare providers, it’s obviously critical for us to consider the effects of diabetes and other chronic conditions on our patients’ overall health. However, I think that in some cases, we’ve trained doctors and nurses too well. Many physicians, in particular, seem very eager to lay every single health-related issue at the feet of the chronic condition, just as my mother’s doctor did. They seldom ask themselves, “If this patient didn’t have this condition, to what would I attribute these symptoms?”

With the wealth of sophisticated diagnostic tools now available to us, it’s more important than ever for us to remember that a patient is not a diagnosis. If we insist on seeing our patients only through the lens of their chronic condition, we risk blinding ourselves to their very real suffering.

The pain of my mother’s lengthy convalescence could have been almost completely avoided if the doctor had been willing to look beyond her diabetes. Unfortunately, he had become so fixated on a single tree that he lost sight of the forest, and my mother paid the price.  

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