By Sinnoman O. Powell, Pulse Intern May, 2022
Many strides have been made across the healthcare system in the United States: new technologies born, sanitation methods improved, and knowledge gained. However, with these accomplishments, mistakes have also been made: politicization of health beliefs; medications once deemed to be miracle drugs of their time falling short on their promises and causing more harm than good; people being used as subjects of experimentation; truths withheld from the public to avoid mass hysteria. All these injustices have a role in the “them vs. us” construct in healthcare, when an open dialogue could benefit us all.
I spoke with a woman (let’s call her Amy) who has worked in the medical field for almost 30 years as a patient advocate. Amy is a Caucasian woman in her 50s with a plethora of knowledge of the ins and outs of healthcare facilities and acceptable performances in that setting. This makes her great at what she does, but also knowledgeable. Amy attended a conference that was focused on healthcare equity in low-income and lower class communities, where the two guest speakers were affluent African American healthcare workers, whom she was very fond of. The topic under discussion had drawn the attention of the target population — minorities — thus, all the attendees except Amy were of color. During the conference, a participant shared information that was inaccurate. Rectifying such inaccuracies is exactly where Amy’s expertise lies. However at this conference she felt abnormally uncomfortable to do so because she was the sole white woman in the room. When she divulged her feelings to the speakers, they turned around and said, imagine that is how you felt every time you went into a healthcare setting. She realized that her comfortability in going to bat for a patient had a lot to do with the fact that she is usually amongst her “peers” (physicians and nurses that are Caucasian in their 50s).
As Amy shared her experience with me, I had an “ah-ha!” moment. More times than not, the doctors who have cared for me over the years have fit that exact description. Even if I had general questions, or concerns about a procedure or medication, I hardly felt comfortable expressing them. It took hearing Amy’s story to enlighten me about my own experiences. I have been silenced by the bias that I have felt in healthcare settings. The fear of sounding ignorant and being written off as either “ignorant of the facts”, “a new mother”, “hypochondriac”, or “drama queen”, prevented me from getting the answers I not only wanted to know but also in some cases needed to know. Instead, I “let sleeping dogs lie” to avoid feeling insignificant or misunderstood. I did not want the physicians or nurses to think that I was trying to do their jobs for them, or that I was challenging their medical expertise. In other words, I did not want to create a “them vs. me” relationship, so I kept quiet. When I do muster up the courage to ask questions or disagree with the viewpoint of a healthcare professional regarding the science behind a treatment or a vaccine, I am often written off as being misguided, when in fact I am very well versed and educated on the matters that I question. Cultural cognition is not even considered to be a factor in my decision making.
Additionally, this case raises a recurring theme that I would like to break down, from the perspective of a Black first-time mother who was taught using the Waldorf philosophy. Firstly, as a Black woman but also as a mother, when I’m navigating health care while also working within health care, I am privy to the (sometimes) unconscious bias that occurs. Most physicians and nurses I see do not understand what it is like to be me, or to have certain limitations that I am automatically subjected to as a black female. Most healthcare information that science deems as fact is based on studies conducted on samples that do not accurately depict diversity: a grave injustice to minorities.
Much like the parents who were reluctant to give their children the MMR vaccine, (discussed in “The War on Science”), I would like a patient’s particular strength or vulnerability, immune system characteristics, and health history (familial or even ethnic), to be taken into consideration (Goldenberg, 32). To give an example, I am considered obese, according to the Body Mass Index. This index was created by a Belgian mathematician based off the “average” height and weight of white, European women. I can say with a certainty that I will never fit within that index because of the way I am shaped, but that is not considered when I am going to the doctor. Although, I “eat healthy”, exercise the recommended amount per week, drink a ton of water, and follow guidelines given to me, I am considered to be an “unhealthy” weight and treated differently because of this.
Moreover, when vaccines are tested, the studies usually do not depict diversity, or they do not focus on the different cultures to truly understand the side effects for different ethnicities. Clumping all people together mitigates our differences and does not calm any fears or mistrust I have, because as the past and present have shown, skin color is a good determinant of how someone will be treated in a healthcare setting. The same can be said of people deemed “anti-vaxxers”: they are seen as the enemy in a war against science. We are called upon as patients and parents to play an active role in our healthcare to bridge the information gap in situations of risk, but to do so without questioning the science underlying these health plans’ designs. In fact it is not the science that is in question, it is that “reason is not divorced from emotion”, therefore creating a continual conflict. “This explains why two people can look at the same evidence and perceive it so differently.” (Goldenberg, 51).
As a patron of the health care system, a patient is told what to do to become well or stay that way. Although questions may be asked for clarity, the truth remains that their knowledge of the science behind the answers is less than of that of a physician. In other words, they are asked to make “leaps of faith” and to trust the science. In this already uneven balance of power, the physician, understanding the science, gives directions with the mindset, “Well if you want to get better, you will follow instructions.” However, this does not consider the differences between individuals and their backgrounds. Treatment or prevention hesitancy is not always or solely based in ignorance. This is where the dialogue comes into play, because there is an abundance of mistrust from experiences and history. “The cognitive explanation suggests a reversed ordering of beliefs and attitudes, where misperceptions about vaccines are reflections of less favorable attitudes toward vaccines rather than the cause. If this is correct, then educational interventions are misdirected; successful persuasion must address the negative attitudes rather than the wrong beliefs.” (Goldenberg, 52-53). Opening the conversation about the root of the problem — mistrust — and discussing the different perceptions of the trustworthiness of scientific bodies or institutions, produces the conditions which people need to flourish (Goldenberg, 118). The dialogue needs to be about how hard that is to do when history has shown us not to trust blindly, especially when the health field is not diverse.
It can be argued that writing off the concerns of certain patients is a violation of non-maleficence and autonomy. Dismissing a patient’s doubts regarding their care plan, whether it is to receive or deny a vaccine, is not respecting their right to choose for themselves, while furthering their mistrust of the healthcare system which, in turn, will make them even more reluctant in the future. That is extremely harmful, and “disregarding them as persons worthy of regard is not just bad social policy or an indication of non-inclusive politics — it constitutes a fundamental breach of social justice.” (Kulick, 21) Justice for all is accomplished when the communication fosters the conditions of trust that are needed for mutual understanding. Much like in any relationship, communication is key, as is consideration that different communities are going to need different things to produce trust. Moreover, instead of repetitive fact-spewing, or deeming those who go against the grain as enemies of science, there is a profound need for an OPEN dialogue.