All posts by Mira Reichman

Health Literacy and Patient Empowerment

Those concerned with health literacy hold the conviction that there is a standard of health-related knowledge that individuals must be familiar with in order to make lifestyle and medical decisions and govern their lives with intention. Inadequate health literacy has serious consequences in rates of individuals seeking care, ease of diagnosis, adherence to treatment, and health outcomes. In this way, health literacy itself functions as an unequally distributed medical resource. Yet most troubling is that poor health literacy can transform the healing processes that take place in hospitals into demeaning experiences in which desperate patients must surrender control over their bodies.

In Improvising Medicine, Julie Livingston writes that patients arriving at Botswana’s Princess Marina Hospital may not know the difference between diagnostic and therapeutic procedures, the purpose of the blood tests and biopsies being done to them, and even what exactly is the mass growing inside them that is threatening their lives. Despite the fact that a patient’s lack of understanding of his or her illness makes treating and helping the patient more difficult, doctors often do not answer patients’ questions. For instance, Dr. P., the sole oncologist at PHM who sees between 25 and 40 patients per day, usually does not have time to talk with patients much past laying out treatment plans and giving instructions (Livingston).

This lack of respect for patients’ understanding of their illnesses seems foreign to many Westerners who are accustomed to the privilege of doctor visits concluding with responses to laundry lists of questions and worries. But doctor-patient interactions in Botswana, which were born out of colonial and missionary medicine, are defined by a very different and stark power imbalance. Livingston writes,

The etiquette of the clinical encounter in Botswana…  has long been based on a top-down model. Patients do not expect to ask many questions…  while some patients were content to leave expert knowledge to the doctor, many others expressed a pent-up desire for biomedical knowledge, knowledge that might give more precise shape to their existential and phenomenological concerns. (76)

Further, the obvious gravity and urgency of cancer leads patients to feel understandable desperation, which strips them of even more of their authority over decisions regarding their body.

Another troubling consequence of poor health literacy and patients’ being forced to trust their doctors blindly is that doctors cannot be held accountable for their decisions. Because of strict TB treatment protocol in Carabayllo, Peru, Farmer recounts how poor individuals are frequently treated with drugs to which their strain of TB has already shown resistance (237). Of course, it is the health authorities and policies that are at fault for this ineffective and dangerous occurrence, but one must question whether an upper-class citizen of Carabayllo with a full understanding of drug resistance and treatment options could ever be manipulated and abused in this way. Health literacy gives individuals a voice and allows them to advocate for themselves.

Increased health literacy in impoverished communities could lead patients to develop heightened awareness of the substandard care they are receiving. The more that an individual understands about his or her condition and the treatment he or she should receive, the more aware an individual will be when treatment doesn’t proceed as it should (because of interrupted supply of medicine, lack of technologies, physician neglect, etc.). There is a moment in Monique and the Mango Rains when Kris Holloway notes, “I had noticed that the villagers loved shots. To many of them, shots represent the pinnacle of Western medicine, and Western medicine is good” (7). The ignorance behind the idea that shots are the pinnacle of Western medicine reveals how much medical technology the villagers don’t realize that they don’t have. While one could argue this ignorance is benign, our accepting this ignorance serves to validate the horribly damaging and dehumanizing conception that Africans are somehow ‘living in the past.’

Health literacy can be transformative when it empowers individuals to appreciate their rights regarding health and spread their knowledge. We see in Monique and the Mango Rains that Monique visits neighboring towns to teach women how to prevent diarrhea through basic sanitation and how to treat diarrhea with rehydration drinks (Holloway 56). In addition, a 15-year old named Emelin spoke to the U.N. earlier this year about the health issues that girls in her rural Guatemalan community face such as early pregnancy and gender-based violence. Emelin said, “We [adolescent girls] have a voice and we are going to use it” (Cole).

While putting the burden of reducing health inequalities on the shoulders of the oppressed is unjust and unproductive, it is important to acknowledge that improved health literacy does give oppressed individuals the ability to become catalysts for social change. Health literacy unites individuals over commitment to health and inspires communities to advocate collectively for their health needs.

 

Discussion Questions:

  1. What responsibility, if any, do you think physicians have to ensure that their patients understand and are comfortable with courses of treatment? Is this responsibility greater in a place like Botswana where there exists a very tangible power imbalance between doctor and patient? Considering the dilemmas of language barriers and busy schedules, how much should we expect of doctors?
  2. Outside of the doctor-patient interaction, how can health literacy promotion be incorporated into global health initiatives? What are the important aspects of effective health education programs (such as cultural sensitivity)?
  3. Can health literacy empower patients to advocate for their health needs and even become catalysts for social change in their communities?

Course Readings:

Farmer, Paul. Infections and Inequalities: The Modern Plagues. Berkeley: U of California, 1999. Print.

Holloway, Kris. Monique and the Mango Rains: Two Years With a Midwife in Mali. Ed. John Bidwell. Long Grove: Waveland, 2007. Print.

Livingston, Julie. Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic. Durham: Duke UP, 2012. Print.

External Sources:

Cole, Diane. “Meet The 15-Year-Old From Rural Guatemala Who Addressed The U.N.” NPR, 12 Mar. 2015. Web. <http://www.npr.org/sections/goatsandsoda/2015/03/12/392174520/meet-the-15-year-old-from-rural-guatemala-who-addressed-the-u-n>.

Kanj, Mayagah, and Wayne Mitic. “Health Literacy.” Health Promotion Conferences. WHO, 26 Oct. 2009. Web. 2 Oct. 2015. <http://www.who.int/healthpromotion/conferences/7gchp/Track1_Inner.pdf>.