My story isn't Serena Williams' story, but some things sound the same

Elias Peter pheski69 at GMAIL.COM
Tue Aug 21 14:26:09 UTC 2018

When I evolved a system of doing office notes collaboratively with the patient, on unplanned but valuable side effect was that it became natural to record (with the patient helping with the phrasing) both my impression and plan and the patient’s impression and requested plan when the two differed. Openly documenting in a non-judgemental way what the patient was worried about, questioned or requested clearly legitimized the patient’s perspective for both of us. Regardless of what we subsequently decided to do, it was a big step in the direction of listening.

It is not the EHR that makes this aspect of care hard. It is the industrialization of medicine with its attendant time and productivity pressures.

If Dr Cejas had been working early on with a clinician whose approach was to have her add her concerns and requests to the note, I think the outcome might have been different.

Peter Elias, MD

On 2018.08.20, at 6:13 PM, HM Epstein <hmepstein at GMAIL.COM> wrote:

Excellent personal article from a doctor-turned-patient about implicit bias in medical decision-making. What can WE at SIDM suggest to doctors to change this common error? <>


My story isn’t Serena Williams’ story, but some things sound the same

Diana Cejas, MD <> Conditions <> August 16, 2018
I’m not much of a tennis fan, but I am a fan of Serena Williams. Who wouldn’t be after hearing her story? Her rise to the upper echelon of athletics was remarkable, and her longevity is incomparable. All the while, she has challenged the sporting world’s notions about who and what an elite tennis player is supposed to be. I watched her interviews after this year’s Wimbledon finals and was once again in awe.

Less than a year prior to this championship, Ms. Williams delivered a baby girl and then suffered from a pulmonary embolism and other complications. What stuck with me most about her delivery story was the fact that her doctors didn’t seem to take her at her word. Ms. Williams has a history of a previous pulmonary embolism and knew the signs, symptoms, and management. When she became short of breath, she voiced her concerns about the possibility of a pulmonary embolism and asked to be worked up for it. However, members of her health care team thought that she was confused and tried to calm her down. They didn’t seem to believe her. They acquiesced after she kept insisting. What would have happened if she hadn’t kept insisting? Why didn’t they believe her the first time she said that something was wrong?

I need my doctors to believe me. I am quite sensitive about that, and that is because I know what it feels like when they don’t. I found a mass on the right side of my neck during my first year of medical school. I remember pointing it out to my friends after anatomy lab and all of us agreeing that I should have it checked out. I dutifully went to student health where I was told that the mass was a lymph node and that I shouldn’t worry about it.

Even then, I knew that didn’t seem right. I went back to student health and other doctors again and again as the mass slowly grew. Each time I was told it was some kind of lymphadenopathy or a random infection and something not worth troubling myself about. I asked for imaging and was denied over and over again. By the time I was a second-year resident, the walnut-sized mass was hard and fixed in place with three rubbery lymph nodes on top of it. I knew. I went to another doctor, and when she started to tell me not to worry about it, I had what amounted to a hissy fit. I knew myself and my body. I knew something wasn’t right and I wanted imaging.

She ordered a CT to appease me, and I had it done that same day. Within two hours, I had my diagnosis: carotid body paraganglioma. It was resected, and those three lymph nodes were sent to pathology. That’s when it was confirmed to be malignant.

Cancer and the stroke that followed it changed my whole life. It upended everything I thought I knew about the doctor-patient relationship. I realize that I had a relatively rare cancer and that my outcomes were unexpected. I could understand my physicians’ reassurance after our first meetings. I was young and otherwise healthy. Nothing was supposed to go wrong. What I couldn’t understand is that I kept coming back with the same complaint, a growing concern, and a growing mass, and despite that, my concerns were continually dismissed. I was a medical student and then a doctor myself and still felt like no one took me seriously. I started to wonder why.

A growing number of studies are examining the way that physicians respond to their patient’s complaints. Too often, it seems that physicians downplay their patients’ pain, psychiatric symptoms, trauma and other concerning issues. Implicit biases and other psychosocial factors certainly influence our interactions with patients. Women, people with disabilities, minorities and other members of marginalized communities are particularly vulnerable to bias within the medical community.

Unfortunately, these biases lead to poor patient outcomes. We, physicians, know that these disparities exist but we seem to be a bit unwilling to question ourselves about them. How often have we heard patients complain that doctors don’t listen to them? That we don’t take our patients seriously? How often are these patients labeled as “difficult,” “noncompliant” or “crazy?” How often are those patients women? Black? Latino? Gay? How often do those patients look different from us?

My story isn’t Serena Williams’ story, but some things sound the same.

We’re both young black women in positions of privilege who faced a catastrophic illness. Despite our respective privileges, we both had to fight to get the health care that we needed. Things could have been worse for us both, but they could have been a lot better too. I wonder if things would have been different if my first doctor had ordered a CT scan. I wonder if the tumor would have had the time to spread. I wonder if I would have had a stroke. Regardless of how things turned out, I’m glad for the lessons that I’ve learned. I know now that listening to my patients and making them feel heard is one of the most important things that I can do for them.

Sometimes a patient’s complaints seem outlandish and their symptoms impossible. But sometimes they’re right. Sometimes just listening to a patient can save their life.

Diana Cejas is a pediatric neurologist.

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