The Body Covers: The 2001 National Conference on African Americans and AIDS
Does Culture Affect Adherence?
Dr. Fullilove first examined if indeed culture affects adherence. He claimed that a significant number of health care providers never consider the question at all. Further, outdated "cultural sensitivity" trainings are often the only method for learning and discussion on this issue. This training usually amounts to a group of white people sitting in a circle learning about "what it's like to be African American, Asian, and Latino." Each racial/ethnic group is given 20 minutes with time for questions and answers at the end.
Aside from the fact that this type of training has proven to be ineffective at teaching cultural sensitivity, Dr. Fullilove asserts that they are particularly poor methods for examining the ways that culture can impact the clinical experience. This is because the racial/ethnic culture of the patient is merely a small part of the interaction. Rather, there are a variety of cultures at play within a typical medical visit. Some of these include: the traditional role of the physician versus the role of the patient; the racial/ethnic culture of the physician versus the racial/ethnic culture of the patient; the gender of the physician versus the gender of the patient.
Dr. Fullilove explained that even if a physician and patient were of the same race and gender, many other cultural factors could result in miscommunication. He then gave us a working definition of culture in order to better examine how attention to culture can produce practical and beneficial results. He gave three definitions of culture:
He used a story to illustrate how worldview can be informed by culture. He asked us to imagine that two people had been witness to a horrible car accident. The car slams head first into a large tree, however the driver escapes nearly unscathed. He then asked us to imagine that these two witnesses are two very different people. The first witness is a statistics professor. Such a person might be enthralled by the accident, tending to think of it within the framework of the law of probabilities. He would be fascinated to have witnessed such a random encounter, something against all the odds. He would likely scour textbooks and manuals on the subject in the days following the accident.
Dr. Fullilove asked us to imagine that the second witness is his aunt who is a deeply religious woman. As soon as the driver was proclaimed safe and healthy, his aunt would certainly run up to the man, shaking her finger and claiming, "Boy, the Lord was good to you. You should have been dead! The only reason you survived was the hand of God! He must have work for you to do and you'd best get down on your knees and pray right now."
A patient's values clearly can impact the doctor-patient relationship. Particularly, Dr. Fullilove spoke about how people can assign value differently to the advice and information given by a doctor. He went on later in the presentation to explain how the legacy of slavery continues to have a profound impact on the hearts and minds of most African Americans. He pointed out the ways that slavery and persistent racial prejudice have led most African Americans to always look over their shoulder. He spoke of how their powerlessness under slavery, and later under Jim Crow laws, led blacks to question and mistrust all authority, an authority that was always represented by the white man. This would also explain the mistrust that many African Americans feel for all people in authority positions, whatever their race, and the disrespect often accorded African Americans in positions of power.
He recounted a situation played out daily in the U.S. A typical African American patient, taught throughout life to question the facts, to question authority, sits in a doctor's office. She asks the doctor to clarify a point the doctor has just made. The doctor thinks for a moment and then states that, "it's really too complicated." To the doctor, this may mean that "I've only got 15 minutes with you and we're already up to minute 13 and I've got three other patients in the waiting room. I don't have time to go through this with you." To the patient, however, it is a sign that the doctor considers the patient too stupid to understand. Too stupid because she is black. Too stupid because she is a woman. If the patient had any trust in the doctor before this, it is unlikely she will have much left when she leaves his office.
Another way that divergent cultures can come into play in the medical setting involves the perception of illness and death. Most physicians are taught to view death as the enemy. It should be fought and conquered no matter the cost. Dr. Fullilove states that this orientation permeates the profession. This is further amplified if the doctor is Caucasian, as American culture has come to think of death as something that can be controlled or overcome. Witness the plethora of magazines and Web sites devoted to living longer and healthier.
This set of values, this orientation and worldview, is often diametrically opposed to the patient sitting in the doctor's office. For many African Americans death is neither so frightening, nor as controllable as it may seem to the physician. In many African American communities, death comes as often for the young as it does for the old. The average life expectancy for black men in Harlem is 49 years. Dr. Fullilove explained that African Americans are not indifferent to death. Rather, they feel differently about it. Further, in a culture where death can strike so unexpectedly and so early, quality of life may take on much greater importance than the number of years a person may live. If death can come at any time, if a person perceives themselves to have little control over the length of their life, then that person's well being today can seem far more important than a tomorrow that may never come.
Given this worldview, is it any wonder that so many African Americans are reluctant to take medicine that may cause them to feel ill, that can distort their bodies and make them feel weak and undesirable, on the chance that the medicine may extend their life?
Dr. Fullilove then gave a practical recommendation to all physicians treating patients for HIV. He counseled them to conduct their patient interviews differently from the start. Instead of beginning with questions like, "How are you feeling?" he offered the alternative questions:
It takes only takes one bad experience by one person to completely invalidate 300 positive experiences in the minds of others, Dr. Fullilove explained. It is imperative, he said, for physicians and their staffs to become aware of what kinds of stories circulate within various communities about HIV and the medications used to treat it. He reminded us that many people see the drugs as coming from a government that first enslaved them, then experimented on them for decades in the Tuskeegee syphilis experiment. He cautioned physicians not to merely shrug off such concerns as irrational thinking.
Dr. Fullilove ended his talk by reminding us that we have a new president, a president who won an election without winning all of the votes. He reminded us that this new President proudly touted his record on law enforcement in Texas along the campaign trail. This "tough on crime" president was responsible for locking up and putting to death more African Americans than any other elected official in recent history. Dr. Fullilove asked us to remember this, and to remember how much this could complicate our work in the future.
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