The 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.
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.
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.
I work in the UK and have worked in London Emergency Departments. We have a smaller Afrocaribbean population in the UK than you do in the US (especially in the region where, say, I went to med school) so perhaps it is understandable, but I think most Drs don’t have a clue about the life expectancy of people living with sickle cell disease. In fact, I have heard many say so. There is a lack of teaching about this and understanding of complications which I think is a systemic issue. I had weeks on a ward that was largely for cystic fibrosis sufferers and there is a massive outcry when poorly cost-effective treatments for CF come out. I recently listened to an excellent podcast series, “Free Associations” – it’s essentially a public health journal club, and they were reviewing a new drug for sickle cell which showed promise in trials. They commented on how little interest there was in the press about this (they look at the altmetrics for every paper they review). The press doesn’t have preconceptions about sickle cell disease patients and opiate-seeking behaviour in the ER. To me, this is a systemic ignorance (?racism? / perception of this being a disease of other people?), and a disease which deserves far greater education, in the public and in the medical community, and as you say, research. I have seen young people severely affected by sickle, systems not being put in place (like ER care plans for repeated visits) and the confounding of it by wider determinants of poor health in the UK and I would like the whole system to change! There is a sickle cell society in the UK and they do get some footholds but a greater patient or community voice would help, I think. I am trained in HIV medicine now and have seen the importance of patient pressure on funding decisions. Of course, we have nationalised healthcare, so it’s a different playing field. Keep raising these issues :-).
I am discriminated against by my doctors.
I commented previously here, mentioning that I don’t see a lot of SS patients in my community based hospitalist practice. But I thought about this article last week when I admitted a patient in crisis. She appeared to have an unrelated illness but complained of hurting all over, though her lab suggested she was not in crisis. So I felt some skepticism but believe I treated her with sympathy and respect.
It is all too easy to stereotype, not just by race, but by illness. A small portion of SS patients account for a disproportionate number of ER visits and hospital admissions. Some have a clear agenda to receive narcotics as opposed to getting an (hopefully objective) evaluation. I’ve seen patients, sickle cell and others, that I must wake to visit yet ask for more pain relief. So I am left with the highly subjective and imperfect ‘gestalt’ of language and visual cues.
I nevertheless know what a horrible disease SS is and have seen many of the life-shortening complications as well as patients with severe crises and excruciating pain. So my challenge is to assess, with attention and compassion, pain even when I perceive an agenda.
Thanks again for an excellent article and a reminder about stereotypes.
Great article and thank you for being transparently honest.
As you know your willingness to question your own personal biases could have potentially saved this person’s life.
In this day and age you would think that all medical professionals would know to give patients the benefit of the doubt when it comes to handling pain and potentially serious conditions such as sc.
Thanks again for having the ability to check yourself as well as share your experience.
I’m crying BC we (#teamsicklecell)have risked our lives OFTEN BC we wait until the last minutes to come to any ER in fear of this treatment right here! The crazy thing is I HAVE AN AMAZING DOCTOR NOW but he ain’t in the ER so I would wait until I know I can reach him(risking my life all the while) because of the horrendous treatment received in many Emergency Rooms! And yes it adds an EXTRA sting when the attending is someone of color! We as A COMMUNITY have PTSD because of THIS treatment but I am so appreciative that you are brave enough to admit this! You are changing the way others into your field see EACH patient! Thanks for making me proud of becoming an advocate myself!
@ Hutchinson Lashawn- I too suffer from PTSD and psychological trauma associated with the inhumane treatment I’ve received from the Emergency Room. unfortunately, most recently, my old hematologist left the practice and I was given a different one who recently questioned my integrity when it came to the management and treatment of my disease. I’ve never gone through such pain and heartache before, I’ve had to fight to disprove racial stereotypes and bias. Since my transition from pediatric to adult care it seems like the treatment, or lack there of, has become more and more grotesque over the years. Knowing that I am not the only one who has experienced these deep seeded issues lets me know that I am not alone and hopefully we can gather together and support one another and evoke some sort of change.
I was touched by this article because I have Sickle Cell Anemia and everything that was said is true,often times when we are in the emergency room we are put on the back burner so to speak because we have Sickle Cell and we are judge by just seeking pain meds,which is not true in most cases.I myself have experienced the behavior of doctors telling me you can’t possibly be hurting that bad,or we will get to you shortly.I don’t think most of the doctors know what it really means to be in a crisis and I always said I wish they could experience the pain just once and they would have a better idea of what we really go through.They need to be better informed of what Sickle Cell Disease is and how to recognize and treat a crisis.
Comments are closed.