The Centers for Disease Control and Prevention (CDC) released a fact sheet for sickle cell patients. The fact sheet was intended to help sickle cell patients understand how they can improve their emergency department (ED) experience. But why is it the responsibility of sickle cell patients to improve the care they receive in the ED? Proper care in the ED should not depend on a patient, it is the responsibility of the hospital, physicians, and medical staff. Hospitals are a vital business which provides medical service to customers. When one is a customer in a restaurant, there is no fact sheet that tells you how you can make sure you have a great dining experience. The service you receive as a patron is the reflection of the waitress, staff, and restaurant operation. Sickle Cell patients are no different from other patients visiting an ED. They want quality care and the expectation for them to improve their experience is insensitive.
Furthermore, the fact sheet makes a lot of assumptions. It assumes that patients have a primary care doctor or hematologist. If you don't, well the helpful tips listed aren't very viable. It states that before you get sick, you should speak with your "regular" doctor to ensure that your electronic medical record (EMR), medical history, and pain medicines are up to date. Great advice if you have a "regular" doctor, but the problem for most sickle cell patients, is finding a primary care physician or a hematologist that is knowledgeable, friendly, and understands the complexities of the disease.
The second assumption is the illustration of the doctor and patient in the infographic. Why is the doctor illustrated as being white or of a lighter complexion while the patient is black or of darker hue? The illustration is perpetuating a stereotype that sickle cell is a black disease. It is common for people of African descent to have sickle cell but it's also common for the disease to be found in Latinos, Italians, Asians, etc. I would love to see an infographic that illustrates the diversity of people living with sickle cell.
The third assumption is that following the helpful tips will improve care in the emergency room. The fact sheet is missing the problem which is having a medical community that understands the needs of sickle cell patients. The fact sheet mentions that when you go to the ED, you should mention that you have sickle cell. If I am in pain, don't you think the first thing I am going to do is tell the medical staff that I have sickle cell so my complications can be addressed in order to relieve the pain? I have been to the ED with physicians questioning me if I am really sick or in pain, assuming that I just want pain medicine or just want to fell like a victim. Following the helpful tips outlined in the fact sheet does not improve emergency care.
As you can tell, I disagreed with the content of the fact sheet but I loved the layout and design of the infographic. I thought it was colorful and eye catching. Also, I thought it was a good idea that the fact sheet recommended for patients to have a record of their medical history because when you do enter the ED, time is of the essence. Save time by sharing your medical history instead of waiting for your medical records to be transferred. Being proactive in a vulnerable situation is the goal.
Overall, sickle cell patients are not the problem during ED visits, the problem is how they are treated. I believe the best way to improve care in the ED is to promote more awareness, knowledge, and understanding about the disorder in the medical community. In addition, it is important for hospitals to work with patients to understand and address their frustrations and needs by implementing procedures and policies in order to improve visits to the ED. If the medical community or the CDC needs assistance, Sickle Cycle will be happy to guide them in the right direction for positive results.