T

he young woman was curled up in a ball. She was sweating and shivering from pain. As she answered my questions — all my many, many questions — tears fell silently from her eyes.

I was a third-year medical student, and the resident I was working with had asked me to evaluate this woman. She had been here several times before. She was in the middle of a sickle cell crisis.

I remembered this young woman while reading STAT’s recent story about how too many patients with sickle cell face exhausting, infuriating — and life-threatening — delays in getting care when they arrive in emergency rooms in excruciating pain from a restricted flow of oxygen to their organs.

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Thinking back, I’ve recognized the truth of that article: We don’t always take sickle cell seriously. I realized, too, that I, a doctor of color, might be complicit in bias against these patients. The more I think about it, the more I realize how deep the roots of that injustice stretch.

In my first year of medical school, we learned about sickle cell — the genetics that lead to misshapen blood cells, and the damage such cells could do to the body. Our instructor mentioned that testing for sickle cell needed to be handled carefully, because they might become de facto paternity tests.

Such a statement could apply to other diseases with the same genetic inheritance patterns, such as cystic fibrosis or Tay-Sachs disease.

But we never talked about how testing for those diseases, which affect mostly whites, might lead to paternity shake-ups. That prospect was only mentioned with sickle cell — in a remark that carried a subtle indictment of a particular black family structure. Later, as my classmates and I talked about sickle cell in a discussion group, someone cracked a “baby-daddy” joke. Eventually, this daytime TV clip, a staple of the talk show circuit, found its way around the entire class.

It was funny. I laughed. I hadn’t started seeing patients yet, so hadn’t yet experienced how such behavior could, in the long run, lead us to undermine some of our most vulnerable patients. I hadn’t yet realized how the insidious association between sickle cell and ridiculous paternity questions could make us internalize racially denigrating attitudes — and lead us to fail to take our patients seriously.

I didn’t have racist intent when I chuckled at that video. My classmates probably did not, either. But the tone set during that lesson on sickle cell may have affected how we all thought about the disease, and about our patients, for years to come.

We need to be sure that medical students learn about every disease without judging the people living with it.

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The sickle cell patient I evaluated in the hospital two years later was in bad shape. On top of her tears of pain, on top of the sweat and the shivering as her body revolted against her through no fault of her own, she had a fever and a cough. She needed fluids, pain medication, and oxygen at a minimum, and I planned to ask my resident to order these treatments. Slowly, I came to realize that she needed more than that: She had symptoms of acute chest syndrome, a leading cause of death for patients with sickle cell disease.

I quickly found my resident, apologized for interrupting the ultrasound he was doing, and said, “I think my patient has ACS.” I told him that I’d looked it up and learned that  ACS requires prompt management to prevent death. “I think you should come look at her,” I said.

I was right. A chest X-ray confirmed the diagnosis and the woman was admitted to the hospital for treatment.

As sick as she was, why was I, a medical student, the first one to evaluate her?  The emergency room triage system is supposed to send those in the most acute need to more experienced physicians. This patient had a long medical history of sickle cell-related issues and clearly needed urgent treatment by a knowledgeable clinician.

Yet she had ended up with me.

I had then compounded her misery — and perhaps put her life at risk — when, in trying to be a good medical student, I spent a lot of time asking her questions, and then spent even more time researching the complications of ACS before bringing my concerns to my supervisors.

Why did I wait so long? Perhaps I trusted that my residents and attending physicians could accurately triage each patient’s risk, and would only allow me to practice my clinical skills alone in low-risk settings. Perhaps I wanted to prove that I could be compassionate but also clinically discerning — not get played by patients that were only after pain medications. Perhaps, I too had learned not to take this particular kind of suffering that seriously. I struggled with this existential crisis as I watched my patient with a sickle cell crisis get wheeled out of the emergency room on a hospital bed.

The message I took away: Her care was not a priority.

This attitude is pervasive from the bedside to the lab bench. Research on sickle cell disease lags far behind. More people suffer from sickle cell than cystic fibrosis, but cystic fibrosis research gets 3.5 times the funding that sickle cell does.

Who decides what’s pressing and important? How do we communicate this urgency to the next generation of doctors and physician scientists in training?

If we are unable to challenge our attitudes and change our priorities, my fear is that we will continue to marginalize the care of these patients, especially in our efforts to curb the opioid epidemic. Deciding how to treat pain can be really challenging, regardless of the diagnosis. But the question should never be one of deciding whose pain to treat and whose illness to take seriously.

As a doctor and a woman of color, I am renewing my commitment to treat all patients with equal dignity and concern. I hope I will continue to recognize when my attitudes have been wrongly shaped by racism, whether subtle or overt — and will continue to fight to avoid letting such views affect the way I practice medicine.

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  • Kevin,
    She clearly states that she was a medical STUDENT at the time, and therefore shouldn’t be expected to know how to fully manage sickle cell–that’s the job of the more senior ER docs, who should have taken note of the patient’s poor condition rather than ignoring the patient based on racial biases and leaving the patient’s care to someone who is early in clinical rotations.

  • As a Hematologist, this article was particularly timely as I just became an attending physician, and had to correct an intern who kept referring to a patient as ‘a sickler.’ She did not think she had any ill intent, but I explained to her how it’s a loaded term, and then we discussed the importance of proper treatment of sickle cell anemia patients. It seemed to be a productive discussion. Until an experienced nurse came into the room a moment later and casually mentioned that she “didn’t take sicklers on this floor.” We have a ways to go to properly treat these patients, we need to acknowledge all of our biases in the medical community, and we all have to do better.

    • How shocking – that a patient who sickles her cells be called a ‘sickler’ – that is racist and disgusting. Next you’ll hear someone with a broken leg called a ‘fracture patient’, or nephrolithiasis a ‘stone former’.

      Perhaps we need to take a step back and realize that this is about taking care of patients, not about us, and what image we project; how you care for that ‘sickler’ is far more important than what term you use to refer to them.

  • Would love to see some social action brought to improving quality of life for patients with SCD. I Learned about this disease in 4th grade, and am appalled that now, as a graduate nursing student, I’m witnessing patients in my clinicals suffering in agony. The attitude of the staff can be pretty heartless, and I cringe as I watch my SCD patients take dose after dose of hard narcotics only to continue reporting a high level of pain. I don’t know the answer but there’s got to be a better way.

  • I’d say you performed in an exemplary fashion for a student.
    I’d say there are a number of cognitive biases at play that led your patient to be triaged inappropriately. Racial stereotyping is very likely, but anchoring is way up there.
    I see very few sickle cell patients in a community hospital. But a certain subset are frustrating. Those often have a very specific agenda prioritizing pain control with a specific drug. And some selection occurs because those with the worst problems are those we see most frequently. And it is often frustrating treating patients and illnesses refractory to our best efforts. None of these are adequate to excuse poor patient care and though I’m approaching my dotage, I thank you for the reminder.

  • Acknowledging a statistical reality isn’t “racism”, whether it is the prevalence of hemoglobin-S, or the prevalence of unwed pregnancies or fatherless families. Certainly it IS racism that caused the Democrat party to realize in the 1960’s the electoral gold-mine they could tap into if they ‘helped’ the people-of-color just enough to befriend them, but not enough to help them actually gain economic dependence and family stability (both of which they were rapidly gaining up until Lyndon Johnson’s final ironic blow via the ‘war on poverty’. As one with not only many minority patients, but friends as well, it makes me cringe to see how much REAL racism comes disguised as ‘help’, and how many other things labeled ‘racism’ are most assuredly NOT racism.

  • This article hit home for me. My brother suffers from sickle cell and its many complications. I’ve been in the hospital with him on numerous occasions where doctors and nurses ignore him and/or underestimate the intensity of his pain. It’s such a frustrating feeling when you’re leaving your loved one in the hands of someone else who you don’t believe truly values him and what he is experiencing.

  • The medical school professor who taught me about sickle cell disease 25 years ago was so inspiring he motivated me to become a hematologist. He was a 70 year old man with a thick Austrian accent who was adored by his patients – even two angry young men I met who were in prison for violent crimes and didn’t give anyone else the time of day. The professor, as a Jewish teenager, had fled Vienna after the Anschluss and lost much of his family in the Shoah and said he knew what it was like to be treated like a second class citizen. He was a great teacher and not just about science.

  • This disease should be at the top of the list since it was that first genetic disease for which the molecular basis was known. It was Linus Pauling in 1949 who predicted the nature of the change in the architecture of red blood cells due to a change in the amino acid sequence of hemoglobin.

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