The Story Left Untold
Family Medicine
I arrived at Pickens Family Medicine clinic, alongside a crisp autumn breeze. I had arrived a few minutes early to prepare for another day. Days were always busy
at Pickens, where patients had more co- morbidities than minutes to discuss them. For every patient, in order to get ahead, I would commence on a journey through the corridors of EPIC with my mouse serving as my noble steed.
Visits for chronic disease management had fairly predictable stops. For diabetics, I would look up their HgbA1c and medication history to get a sense of their overall management. Then, I’d check their blood pressure and lipid panel to make sure they were being treated with the latest hypertension and cholesterol guidelines, which lead to everyone and their mother being put on atorvastatin. Lastly, I’d check if they had seen an eye doctor within the last year and if they had received their flu shot yet.
The journey became slightly more spontaneous as I tried to piece together what had happened since their last visit. Some patients had gone to the ED with acute flare-ups. Others were seeing cardiologists
or nephrologists now that their chronic conditions had started taking its toll on their organs. By making mental connections, I could piece together a simple, concise history before even meeting the patient.
I tried my best to make this journey an objective means of previewing my conversation with the patient. However, I would sometimes find myself entering a room with an HPI already formulated in my head. The patient just needed to help me fill a few gaps in the story. EPIC made it all the easier with various templates one could follow – those templates could sometimes help guide the creation of the story and determine the probative questions needed to make it real.
It was less a habit of creativity, more a habit of convenience. While the best stories are those with nuance and complexity, the nature of the beast (i.e. 15 minute visits) made mundane, straightforward stories more appealing. Too bad these stories were rarely accurate.
———
“Ms. M?” I said after knocking, “My name is Vinayak, and I’m a medical student working with the doctor today. Can I talk to you for a bit?”
“Sure, that’d be fine,” She replied, softly.
She was a heavyset, African American woman in her 70s with horn-rimmed glasses of my parent’s era and deep wrinkles beneath her eyes. She had a steady affect, as if age had touched her a few times too forcefully and left her tired and jaded. She had made eye contact for a couple seconds while answering, but was now staring at the floor.
“What brings you in today?”
“To talk about my diabetes.”
EPIC had told me that she was in for a one-month checkup on her diabetes. So before coming in, I had scrambled through her EMR to get all her numbers. I also knew she had a full spectrum of active problems: diabetes, hypertension, high cholesterol, obesity, COPD, coronary artery disease, and end-stage renal disease. In a 15-minute visit, however, diabetes necessarily had to be the focus.
“How have things been going?”
“Well, I think it’s been going fine,” she said. “I haven’t really paid much attention to be honest.” Her diabetes was not fine. Her numbers were headed in the wrong direction. Her HgbA1c had been holding steady for a few months but had risen quite a bit. Her blood and urine tests showed signs of worsening kidney disease. Thankfully, her eye doctor had noted stable diabetic retinopathy in his visit last month, but who knew how long that would last?
“Have you been able to measure your glucose at home?” I asked.
“Sometimes in the morning,” she said.
“Do you remember what they read when you check them?”
“I really can’t remember, but I think they looked OK.”
I tried to get more information, following a standard script — has she had any episodes of high or low blood sugar? Has she had chest pains or shortness of breath? How about numbness/tingling or changes in her foot sensations? Changes to her vision? These questions led to a parade of “No… no…no…no.”
“Do you get three full meals a day?”
“Not really,” she replied. “I’ve had a smaller appetite in the last month.”
“How’s your exercise regimen been going?” I asked.
“I haven’t been working out much,” she replied.
“I used to go to the Senior Center, but I’ve just felt too tired to go.”
She shifted her gaze from the floor to my eyes before going back to the floor. A tear meandered down her left eye, getting trapped in a pool around her frames. Then another one. And another. She pulled out a tissue to wipe her eyes, moving her glasses up so I could see her bloodshot red eyes unhindered by refraction. She continued to look down at the floor, never looking up.
“What’s wrong, Ms. M?” I asked, gently leaning in.
“I lost my daughter two months ago,” she said, softly. “It’s been tough trying to get through that.”
The story that I had constructed in my head before the visit had been reduced to ashes. All those lab values and previous clinic notes did not hold meaning today. All those scripted questions meant to guide the story’s formation — are you having trouble monitoring your glucose regularly? Taking your insulin and metformin? Having side effects to them? Eating healthy and being active? — weren’t going to be helpful.
Despite the chief complaint recorded in EPIC, this was no longer a visit about diabetes management. It was about so much more, and there was no EPIC template to guide that conversation. Nor should there be. The conversation that followed was unscripted, unhindered, unbiased by previous data. She told me about her daughter, how her passing had affected her, and how the grieving process had been since. Her daughter had issues in the past, but she had been working towards improving her life. But her life had ended in a freak car accident, leaving behind broken memories and a deluge of emotions for her mother.
Though Ms. M had become reclusive and detached over the month, she also had a strong spirit who was motivated to get better, both physically and emotionally. She was starting to feel better, reconnect with her friends, and spend more time with her living children. But in acknowledging the progress she had made, she was mindful of the things — such as her late daughter’s birthday — that could set her back.
The emotional roller coaster of grief was consuming so much energy that she had not been able to keep up with her medications and blood sugar management. Fortunately, she had volunteered this information during the visit — other patients might not have done so. Without it, any history on the patient would have been incomplete, and any recommendations made would not have been helpful.
Through several experiences like this one, I quickly learned how tempting it is to reduce people to numbers and former progress notes — to try to construct my own narrative for them before even meeting them. As much as
I dislike myself for doing so, the inevitable time crunch of a busy clinic, and the well-intentioned effort to reduce wait times, has made it harder to avoid. It takes a lot of time to discover a patient is grieving and help them develop the next steps — it’s so much faster to pull up the PHQ-9 Depression Screen, calculate a number, and ask scripted questions. But by doing so, you often miss the real reason for the visit, the real reason they aren’t doing as well as they could. You miss learning about their story, the real one — the story that often goes untold.
———
The clinical clerkship journey has been filled with several experiences that force me to reflect
on many things. One of them has been the role of electronic medical records in the care of patients. While I have had several experiences where the information contained in them are vital, I have also seen instances, such as this, where it allows me to construct convenient stories that are devoid of color, nuance, or accuracy.
The sheer amount of data and information housed in EPIC is astonishing, but the connections between disparate streams are prone to bias and inaccuracy if not guided by the patient’s own words. As a student just starting out on the medical career journey, I don’t know the answer, but I hope to find that balance with experience – to discover the story for each patient that is often left untold.
Radiology
I’ve found that sometimes medical experiences are less about the patient, and more about the procedure itself or information obtained through the procedure. This was especially true in radiology where most patient “encounters” were through a set of images and most in-person encounters featured sedated patients.
Overall, I found radiologists an impressive bunch, not just for their breadth of knowledge, but also for their incredible efficiency. In mere seconds, a radiologist could scan through a patient’s entire body, looking for abnormalities as they quickly scroll through a morbid flipbook of one’s innards.
They knew so much about someone’s internal anatomy without laying a single finger on a patient. However, to fully understand what was going on with the patient, a clinical story often needed to be constructed. Much to the consternation of radiologists, the referring doctor typically did not provide this story. It fell on them to construct one through the series of progress notes housed in EPIC.
Radiology being my first rotation, I was forced to do this quite a lot for my own benefit because
I barely knew what was going on. In some cases, it wasn’t too hard. If I couldn’t find a fracture on plain film, I’d go back to the primary care note and see where the patient had localized the pain. With more pinpoint focus, I could find the fracture on my second pass — or at least convince myself I did.
One episode in particular impacted me. I was rotating through Vascular and Interventional Radiology and watching my first procedure — a hepatic angiogram and arterial embolism. The patient had just gotten onto the operating table and been covered in surgical drapes. She was a middle age woman with a cheerful smile and lively personality.
“I’ve seen fire and I’ve seen rain,” she was singing. “I’ve seen sunny days that I thought would never end.”
“James Taylor?” asked the anesthesia nurse.
“Yes sir!” she replied, “I’m a music teacher and my students are learning that song.”
“That’s a nice one,” he said. “Alright I think we’re going to get started.”
Her voice faded as the sedative agent started to kick in. The radiologist moved into position. They used fluoroscopy to image the liver’s vasculature and then insert material into the hepatic artery to block its flow from the aorta to the liver. Since most of its blood comes from an alternate source (the portal vein), the liver is still able to survive.
The procedure I watched was a success and took less than an hour to complete. I figured the patient would be happy since I had an impression that most VIR procedures were curative. But I was still left puzzled — why would anyone want to block off the hepatic artery?
I stepped outside and quickly glanced through her progress notes. My answer came quickly as I noted most notes were coming from “Duke Oncology.” The cheerful woman who I just saw, full of life and singing James Taylor, had terminal cancer of the bile ducts in her liver. This procedure was successful in that it cut off the cancer’s main blood supply, but for the patient, it was a palliative, not curative, measure. She didn’t have much time. On top of that, as a single mother, every note contained a social work addendum, discussing what would happen to her kids once she passed.
Beyond asking if I could watch her procedure, I had never met or gotten to know her. I had never met her kids or family. The only impression I got when I left the procedure was she was a vivacious person who had a successful procedure. But all I could think about for the rest of the day were the notes I read. But I didn’t know the full story, nor would I ever. I would only know the fragmented clinical story that could be pieced together through progress notes in EPIC. And the fact that she would soon pass.
———
The clinical clerkship journey has been filled with several experiences that have forced me to reflect on many things. One of them is the role of learning about techniques and procedures. Knowing how a hepatic angiogram is done and how to interpret the information obtained is incredibly important, and often, it does not require knowing the patient at all. While knowing a patient’s history can be important when reading their images, it isn’t necessary to know more than what the reason for the procedure.
And I’ve learned that this is OK — for sake of efficiency and impact, it’s OK to not know the full story. But when I don’t, my natural curiosity often gets the better of me. The only way to learn more is through the fragmented notes contained in EPIC. And by piecing them together, one can discover the story left untold.
Vinayak Venkataraman is an MS 2 who enjoys writing, cooking Indian food, playing tennis, drinking coffee, and cheering for the Buffalo Bills.
