Literature Book Summary: The Immortal Life of Henrietta Lacks

Question:

In a perfect world, race, ethnicity and culture would have no negative effect on the medical care we receive. The effect is due to historical heritage more than skin color. What is meant by this statement?

Historical heritage refers to the experiences of minority groups that shaped how they were viewed and treated. Minorities, such as African Americans, have histories that were determined by majorities and skewed by fabricated stories. In the article, Race Consciousness and the Health of African Americans,  by Rosalyn J. Watts, Ed.D, RN, FAAN, she writes:
"Inequalities about race are best reflected in slave narratives, historical records, and biographies which describe slaves as property rather than persons. Historians frequently reported the characterizations of black slaves as subhuman species with insatiable sexual appetites who lacked intelligence, feelings, and character." These inequalities and prejudices that started in the 1600s with the advent of slavery have carried on through history. This is evident in The Immortal Life of Henrietta Lacks by Rebecca Skloot.
There are several examples in the book that show historical heritage affects the ability of the Lacks family to negotiate the healthcare system. One of the first examples occurs on page 15 of the book when Henrietta first discovered her lump. Her local physician tested her for syphilis because it was common among people of color. He assumed that since she had syphilis in the past, the test would be positive. The test came back negative, so she travelled to Johns Hopkins for further testing because it was the only major hospital that treated black patients. During the time, people of color were segregated from whites because of the sigma developed by the fore-mentioned historians. This treatment is not ethical by todays standards and is an example of a health disparity. Because of the history, Henrietta had limited education and very little understanding of healthcare. Her health literacy was limited and none of the providers she saw took the time to explain her disease to her in terms she would understand. The lack of effective communication between patient and provider caused mediocre care. Henrietta frequently missed appointments or misunderstood the importance of treatment. Perhaps if she understood the importance of treatment for syphilis that was discovered earlier, the cancer would have been found earlier or prevented. Later, it says that Henrietta signed an operation permit paper after checking in at Johns Hopkins for her procedure. Henrietta's limited education and the fact that she was considered a lesser race probably effected her ability to understand what she signed. She said to her husband before going to Johns Hopkins, "Day I need to go back to the doctor tomorrow. He wants to do some tests, give me some medicine." (Skloot, 31) The book then states that she signed a consent for an operation. An operation is much different than running tests and getting medication! She probably did not understand the consent and it was not explained to her by Johns Hopkins staff. These are just a few examples of many depicting how Henrietta's race and lack of education effected her treatment. Not only did historical heritage affect Henrietta's treatment and understanding of her disease, it affected her family.
In chapter 21 of the book, the author writes about her experience meeting the family. There are many times in the book that she mentions that Henrietta was not discussed with her children. In their culture, the children were not to speak unless spoken to and they did not ask questions about their mother. They were neglected and abused, but it was common for poor, black children to grow up that way. Some of the children did not remember Henrietta or know what happened to her. In this chapter (Skloot, 158), the author meets Sonny and Lawrence, Henrietta's sons. When she met Lawrence, he told her a little of what he remembered of his mother. However, he also started asking questions. At one point he asks Rebecca to tell him what his mother's cells really did. He says, "I know they did something important, but nobody tells us nothing." Rebecca soon learns that his health literacy is very limited. She then took the time to teach Lawrence about his mother's cells. Because of the family's limited knowledge, many of them refused to seek healthcare or follow a physician's advice. They were scared of what may happen because of what happened to Henrietta. There were also historical stories about black people being kidnapped and used for research by doctors. They did not know the true story of Johns Hopkins and that the hospital was built to serve the poor. They only knew the bad things that happened associated with the hospital and did not want to be treated there.
The family did not find out about HeLa cells until Bobbette Lacks, Henrietta's daughter in law, spoke to a man she met who was using them for research in 1973 (Skloot, 180). She was appalled. The family had no idea that the cells had been taken or were being used. The family had a hard time finding out more information because they did not know who to contact. At the time, there was a lot of confusion about laws and accessing information making it more difficult for the family to learn what happened to Henrietta's cells. The stories from history also made them worry that the Lack's children would be wanted for research.
Soon, a doctor did ask for blood samples. Susan Hsu called Henrietta's husband to ask for blood samples. Her husband did not understand that the doctor wanted blood samples to look for causes of contamination in research. He thought that Dr. Hsu wanted to test his children for cancer. There was miscommunication between them because of differences in culture and education levels. Dr. Hsu believed that he understood what she was saying. He nodded in understanding, even if he did not understand. He probably did not know what type of questions to ask (Skloot, 183). Later, the author spoke to Dr. Hsu. She said she had no idea that the Lackes did not know the cells would be used for research. She thought they understood what physicians had planned for the samples (Skloot, 189). She was upset to learn that the Lacks family was angry about what happened.
The family's anger came from uncertainty and lack of information. Henrietta's son, Zakariyya, was the angriest of all of the children (Skloot, 241). He is the youngest of the children and does not remember his mother. The abuse and neglect he suffered by the hand of his step-mother as a child made him a violent, angry person. He was in and out of jail throughout life. He met the author on page 245, and is very untrusting. His anger and skepticism comes from the circumstances he was dealt. He does not understand how his family is poor when his mother did so much good in the world and it makes him untrusting. His attitude toward other people makes it very difficult to communicate with him and try to teach him the significance of his mother's cells. The author is successful in doing so by the end of the book, using a beautiful picture of the cells to help her cause.
There are many examples of how their historical heritage affects the Lacks family's ability to negotiate the healthcare system. A good resource to help explain historical heritage in this case is  Race Consciousness and the Health of African Americans,  by Rosalyn J. Watts, Ed.D, RN, FAAN. In the article, the author states with explaining African American history. I found it useful because it is interesting to read the history of their culture and examine my attitude toward African Americans. Do I think the history between blacks and whites shapes my views? I am not proud of it, but YES! When I read what the author writes and thought about how I act in certain situations, I realized that historical heritage has shaped some of my thoughts and feelings towards other cultures. We should care about what this author has to say because she points out that there are several prejudices that are still evident in modern American. She writes that there are healthcare disparities and inequalities that still need addressed in order for CLAS compliance. Finally, the article provides examples of how do develop race consciousness when caring for patients. One example is to develop a reference library of resources on aspects of race, culture competency, and health disparities of staff (Watts).

In a perfect world, historical heritage would not affect healthcare because we would all be considered equal. The Immortal Life of Henrietta Lacks makes it clear that our world is not perfect. We must be race and culturally conscious to provide equal service to everyone. Race Consciousness and the Health of African Americans helped me to understand the history of a different race and become more aware of my attitude toward others. I will be more aware of what the needs of other races are, based on their history, in the future.


References:

Skloot R. The immortal life of henrietta lacks. New York: Crown Publishers, an imprint of the Crown Publishing Group, a Division of Random House, Inc.; 2010:381.

Watts RJ. Race consciousness and the health of african americans. The Online Journal of Issues in Nursing, OJIN. 2003;8(1).