When we speak about ethic in the health field, we usually
discuss whether the treatment was justified. Oftentimes, people forget the
existence of discrimination, and what’s scarier is that it exists in healthcare.
We are taught to care for the whole person regardless of who they are,
especially the disease or sickness they came in with. In reality, this is not
always the case, and discrimination is becoming more apparent in the sickle
cell disease community. If a healthcare provider fails to provide equal care and treatment, they are violating justice from their biomedical ethic values.
Sickle cell disease is an autosomal recessive inherited
disorder characterizes by abnormally shaped red blood cells. People with sickle
cell disease have hemoglobin S that is responsible for causing the red blood
cells to become stiff and sickle-shaped. When red blood cells are inflexible, they
can stick to the walls of vessels and can slow or block the flow of blood. This
limits oxygen delivery to tissues throughout the body, and leads to symptoms
such as sudden pain that can occur anywhere in the body known as “sickle cell
crisis”. Other symptoms include anemia, fatigue, shortness of breath, brain
complications, eye problems, heart disease, etc.
People with sickle cell disease have less access to comprehensive care compared to other genetic disorders such as hemophilia. According to a study in 2013, sickle cell patients have to wait up to 50% longer for help in the emergency department compared to other patients with pain. They are often perceived as drug addicts because of the pain rather than patients in need. According to CDC, sickle cell disease is more common in African descendants. The disease is labeled socially as a “black” disease, which shouldn’t be because anyone can get sickle cell disease. If you were to type “sickle cell disease” into google search, what you get is an image of a dark-skinned woman along with the description of the disease. Approximately one third of sickle cell patients report that they have experienced discrimination when going to the doctor. Study revealed that patients who were previously discriminated are likely to not always stick to their physician’s recommendations. Not sticking to the physician's recommendations can worsen their symptoms. This not only violate justice but non-malfeasance as well. Discrimination not only hurts the patients, it also agonizes the trust between patient and healthcare providers.
People with sickle cell disease have less access to comprehensive care compared to other genetic disorders such as hemophilia. According to a study in 2013, sickle cell patients have to wait up to 50% longer for help in the emergency department compared to other patients with pain. They are often perceived as drug addicts because of the pain rather than patients in need. According to CDC, sickle cell disease is more common in African descendants. The disease is labeled socially as a “black” disease, which shouldn’t be because anyone can get sickle cell disease. If you were to type “sickle cell disease” into google search, what you get is an image of a dark-skinned woman along with the description of the disease. Approximately one third of sickle cell patients report that they have experienced discrimination when going to the doctor. Study revealed that patients who were previously discriminated are likely to not always stick to their physician’s recommendations. Not sticking to the physician's recommendations can worsen their symptoms. This not only violate justice but non-malfeasance as well. Discrimination not only hurts the patients, it also agonizes the trust between patient and healthcare providers.
References:
Stanton, M. V., Jonassaint, C. R., Bartholomew, F. B.,
Edwards, C., Richman, L., DeCastro, L., &
Williams, R. (2010). The
association of optimism and perceived discrimination with health care
utilization in adults with sickle cell disease. Journal of the National
Medical Association, 102(11),
1056–1063. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3663072/
Haywood, C., Lanzkron, S., Bediako, S., Strouse, J.J., Haythornthwaite,
J., Carroll, C.P., … Beach, M.C. (2014). Perceived discrimination, patient
trust, and adherence to medical recommendations among persons with sickle cell
disease. Journal of General Internal
Medicine, 29(12), 1657-1662. https://doi.org/10.1007/s11606-014-2986-7
Gold, J. (2017). Sickle cell patients suffer discrimination,
poor care – and shorter lives. Kaiser
Health News. Retrieved from https://khn.org/news/sickle-cell-patients-suffer-discrimination-poor-care-and-shorter-lives/
Haywood, C., Tanabe, P., Naik, R., Beach, M.C., Lanzkron, S.
(2013). The impact of rac and disease on sickle cell patient wait times in the
emergency department. The American
Journal of Emergency Medicine, 31(4), 651-656. https://doi.org/10.1016/j.ajem.2012.11.005
Center of Disease Control and Prevention (CDC). (2016). Sickle cell disease – data & statistics. Retrieved from https://www.cdc.gov/ncbddd/sicklecell/data.html
This is a really good point Linh. It is sad at how quickly the complaint of pain can be associated with people being drug addicts rather than actually experiencing what they say and needing relief. With there being no way to measure pain and it all being based on perception, it leaves patients such as those affected by Sickle Cell disease to suffer longer as you have said. I also found it interesting that the google image for Sickle Cell disease is that of a dark-skinned woman and the description of the disease. Though this disease is commonly seen among those of the African American race, I agree that it should not be portrayed that they are the only ones to be affected by it. As healthcare providers, or future ones at that, we are meant to treat everyone equally and create that trust between us and our patients. I think you make a very valid point by how this discrimination affects that relationship between the patient and the physician and the actuality of them adhering to the treatment that is given to them.
ReplyDeleteGreat post Linh! Very thought-provoking!
ReplyDeleteIf you were already a healthcare provider, how would you go about changing this relationship between your medical peers and these unfortunate patients? Do you think that holding seminars and teaching conferences about this would be helpful or is there a more impactful way of getting this lesson/message across to medical professionals? What about the patients themselves? I believe the patients will only believe we have their best interests at heart when we begin to treat them more justly and not give in to prejudice. They may not become more compliant with physician suggestions until they see and experience this change for themselves. Unfortunately, this will probably take a long time to prove. I hope incoming generations of MDs, DOs, RNs, etc all get better and start incorporating their medical ethics in their everyday routines. Additionally, I’m sure this discrimination happens much more so in certain areas than in others. It would be interesting to see a map of this. It would probably highlight more urbanized areas that are heavily populated with low SES populations than not.
I had never thought of ethics in medicine from this viewpoint before, but it's a really interesting issue and clearly is something that needs to change. This problem is definitely two-fold in that they are being treated differently because of their race and because they aren't responding to the physician in a positive way when they are treated poorly and this leads to them not handling their disease in the appropriate way. Things like this need to be monitored in our healthcare systems and can't be allowed to occur.
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