Dr. Leana Wen is a wonderful physician and author (as well as a member of the Accolade Medical Advisory Board) who is a recognized expert on the role of communication in medical care. In a talk she gave in May of this year at TedX Foggy Bottom, she spoke, for the first time, about her own experience as a stutterer and the paralyzing impact of the shame and fear that the stuttering caused. Stuttering, for Dr. Wen, is just as important to her identity as her being Asian-American, being a woman, and being a physician. It is part of the complex tapestry of who she is as a person and how she is seen by others and how she sees herself. Each one of us is an amalgam of traits, beliefs, attitudes and histories that defines us for the rest of the world and shapes our own perception of how we interact with the world. This complex dynamic of the world’s perception of a person combined with a person’s own perception of what makes them unique can dramatically affect every aspect of our lives, including our health care. In the latest issue of Health Affairs Dr. Wen builds upon her TedX talk and tells a story of a patient who is also a stutterer who initially receives sub-optimal care for chest pain due to his stuttering. When the care is transferred to Dr. Wen who recognizes the trait and adjusts the evaluation and treatment accordingly he receives the right care.
The way others see us and the way we see ourselves can create barriers to receiving the right care at the right time. In the case that Dr. Wen describes, the first ER doctor saw the intelligent lawyer who stuttered, as someone who was slow, possibly even mentally impaired, and that created a risk that the care to be rendered could be misguided and wasteful. Dr. Wen was called in to obtain blood tests and x-rays to evaluate the patient’s chest pain however when she was able to communicate with the patient in a trusting, caring way, he needed neither as the problem was not what it initially seemed to be. Rather he had found himself in the ER with a diagnosis of chest pain due to his being in a situation in which his fear of stuttering created a panic attack. The blood tests and x-rays were unnecessary and after his evaluation, he was able to go home. It would have been no different if the issue was a language barrier, a manner of dress, or even someone’s race giving rise to bias.
While bias in health professionals is a problem, it is only part of the problem. Each of us also has a trait, belief, or other feature that cause us to feel fear and to block our ability to achieve all that we can achieve. That fear can be related to race, family background, or physical disability. It can be based in personal or historical reality or just be a perception that has no basis in anything overt or obvious. I am a Jewish child of immigrants and while I take pride in that pedigree, when I was growing up, it also elicited a certain fear in me and led me, to sometimes feel as an outsider in the medical circles in which I worked and lived. When I started medical school I had to get past the feeling that every one of my classmates was tall, with blond hair, had parents who were alumni physicians and had gone to Yale (since over 20 people in my class of about 150 at Columbia had gone to Yale it had a bit of a basis in reality). Externally, when I was growing up, I faced some overt anti-Semitism and while not enough to be material, when combined with my family history of uncles and aunts being killed in the hell of Auschwitz, the fear that it elicited was very real. My father, my hero, lived with a certain amount of fear that was founded on the reality he lived with when he was in Europe helping others escape from Germany and he passed some of that on to me. He also passed along the bravery to stand up to the fear and take the kind of risks only an immigrant coming to a foreign land with nothing could take. While that may seem disconnected from the stuttering that Dr. Wen describes, the fear that was part of my family history was a self-perception that sometimes caused me to be treated differently and to hold back when I should have been assertive. It was my stuttering. In a critical illness situation, that can be dangerous.
In health care, which is so personal, the external reality of bias for any reason, and the internal feelings of fear, can lead to care that is bad, dangerous and often more costly than it should be. In May 2013, I wrote a blog post about my son’s hospitalization for a unknown illness, and the perception of the staff that his illness was not serious, or was somehow his own fault (the illness actually turned out to be secondary to an unusual disease totally missed by the staff at the teaching hospital). The bias that they developed, just based on their assumption of who they thought he was hurt his care. Happily, his own self-perception was strong enough, that he could overcome that barrier to get the right care at a different health system after discharge and be treated successfully.
The combination of health professionals who put a “label” on anyone, for any reason and the fear brought on by a self-label can be deadly, but they both can be fought. A person, who recognizes the bias in a health professional, even if inadvertent, can point it out to the doctor, nurse or therapist and in most cases, the professional will probably apologize. Thus the “disease” of bias, which affects care, can be countered, just as it was in the case related by Dr. Wen in the Health Affairs article. If that doesn't work, then quietly demanding to be treated as an individual and not as a perception or a label may be needed. Often the harder job is attempting to overcome the internal self-images that tell you, in a soft voice, that you cannot succeed so you don’t even try. In those instances, just as Dr. Wen uses that self-image of being a stutterer to help her succeed, so others can be coached and supported to embrace who they are and to turn the fear into a strength. In a person’s journey through illness, both the health professional and the patient have to be ready to face their own biases and their own perceptions head on to obtain the best care.