How patient education can save lives

A patient undergoing chemotherapy for breast cancer was diagnosed on April 20th with profound secondary adrenal insufficiency (hypophysitis: ACTH undetectable, cortisol 0.2) caused by immunotherapy (pembrolizumab). She was started on corticosteroids and sent home from the hospital on April 24th with a prescription for only five days of prednisone. After completing the five days of prednisone, she predictably began to feel profoundly weak and nauseous. She continued losing weight and was unable to eat. Finally, after developing a fever, her family brought her to the emergency department for evaluation on May 15th.

Despite easy access to her recent hospital records, the emergency physician promptly diagnosed her with septic shock due to a urinary tract infection and called the hospitalist for admission. After at least a couple of hours in the ED, the patient had already received a full sepsis fluid bolus, antibiotics, cultures, and was subsequently placed on a norepinephrine drip due to refractory hypotension.

Something wasn’t right, though. Her symptoms had reportedly gone on for weeks before admission, yet she had a normal white blood cell count, and her lactic acid was only slightly above normal range. The hospitalist asked the ED physician by phone if something else might contribute to her hypotension, maybe cardiogenic or hemorrhagic shock. Nope, he was told.

In less than a minute, the answer was apparent. The discharge summary from April 24th clearly listed “adrenal insufficiency secondary to chemotherapy” as a top diagnosis, and the patient was shockingly not taking any corticosteroids. Within moments, the hospitalist called the ED physician back and asked him to immediately give intravenous hydrocortisone.

Within 24 hours, the patient felt remarkably better, and she had an appetite for the first time in weeks. Her urine culture grew E. coli, and she was treated for the infection, but her adrenal crisis likely played a large role in her overall clinical status. If corticosteroids had not been started, the outcome could have been much worse. It is also scary to think that if the patient had not developed a fever, she might have stayed home longer, weakened further, or even died.

There is often a combination of errors in such cases that leads to the adverse outcome. In this case, the discharging hospitalist failed to prescribe long-term corticosteroids, and the patient did not have a prompt follow-up with her oncologist. Perhaps the electronic medical record had a default of five days of prednisone built into the orders that the hospitalist clicked on inadvertently.

I was the hospitalist who admitted her on May 15th. When I evaluated her in the ED, she was surrounded by multiple family members, all very concerned. The patient and her family were clearly intelligent enough to understand the concept of adrenal insufficiency and the importance of long-term corticosteroid therapy. This reinforced what I have always believed: Educating the patient and family about their medical conditions is probably the most important safety measure we can take.

Imagine if the patient (and family) had been carefully taught this at the time of discharge: “You have a serious condition called adrenal insufficiency. This means that your adrenal gland, which makes cortisol, is not working. Your body absolutely needs cortisol to survive. So, you will very likely need to take some type of corticosteroid for the rest of your life, every day. Never let your prescription run out, and never let a doctor stop your corticosteroids without a good reason. Now, can you teach me what I just told you?”

This is the conversation I had with her and her family in the emergency department, and every subsequent day she was in the hospital.

Even if we provide excellent care in every way, if the patient doesn’t understand their disease, the risk of adverse events remains high. Unfortunately, patient education is not a metric that hospitals or hospitalists are incentivized to achieve. In this case, the quality officers were certainly watching closely to see that the sepsis fluid bolus and antibiotics were given, cultures obtained, and that serial lactic acid levels were monitored at appropriate times, etc., but sadly, no quality officer has ever come to me to check if a patient has been educated about their condition and medications. Despite all of our so-called focus on quality, the quality officer would never have noticed if the diagnosis of adrenal crisis was missed entirely. Unfortunately, that’s how we measure quality these days. We “strain at a gnat and swallow a camel.”

This month, I was pleasantly surprised when I reviewed a medical record of one of my patients who had recently been at the University of Virginia Medical Center in Charlottesville, VA. Through remote access, I found both a standard discharge summary (for doctors) and a second discharge summary written for the patient (in simple terms). Impressive. It’s extra work for the doctor, but it’s a sign that someone is thinking “outside the box” about patient safety. How would your hospitalist team react to such a requirement–to write two discharge summaries? What would their response say about their priorities?

Too often, when admitting a competent patient with a recent hospitalization, I find that they have little to no idea what happened during the previous hospitalization. Some doctors would blame the patients for not having the capacity to understand medical topics. An old doctor I worked with as a medical student used to say, chuckling, in response to a patient’s question about their medical diagnosis: “Oh, you’d have to go through four years of medical school to understand that!” Honestly, I think he just wanted to move on to the next patient. Certainly, some patients cannot understand the complexities of their medical conditions, but we should at least take time to explain, in simple terms, the most critical aspects of their disease; or reach out to an engaged family member.

I fear that with pressures like “discharge before noon,” hospitalists are forced to rush patients out without taking time to do a very important thing: educating the patient using the teach-back method. As professionals and as a specialty, hospitalists need to step back, awaken our common sense, and take time to teach our patients. It could save their life.