On "Difficult" Patients
I’ve been working through a section of the book involving so-called “difficult” patients. When I think about “difficult” patients, I do not mean patients who merely have medically complex needs (although the difficult patients I’m thinking of may, in fact, have medically complex needs). The kind of patient I have in mind may challenge medical personnel by asking a lot of questions or making demands—beyond what medical personnel take to be “reasonable.” They also may not abide by (what medical personnel believe to be) appropriate norms of comportment. Perhaps their dress, mode of speech (dialect or language), and other ways they express themselves (verbally or nonverbally) are different from how medical personnel believe the patient “should” conduct themselves.
In short, patients may be labeled as difficult for any or all of the above reasons (and several more). “Difficult” can be a catch-all label used to describe patients from the extremely wealthy who come to the clinical encounter with an air of entitlement as though medical personnel are their personal assistants to patients who received their medical degrees from Google and insist that they know more than the clinician regardless of how off-base their information to patients whose behavior is interpreted as hostile, or worse, violent or dangerous.
For the chapter I’m currently working through, I’m thinking about how racial stereotype, racial bias, and flat-out racism intervene on characterizations of black patients as difficult. I’m not making the claim that black patients are disproportionately characterized as difficult, although that would make an interesting quantitative study for someone. My claim is that racial bias can influence which patients are labeled difficult and, perhaps more importantly, what consequences follow from being a patient who is labeled difficult. So, while “difficult” white patients may be met with discreet eye rolls, black patients may be denied care. Or worse.
The case that sticks in my craw is that of Ms. Barbara Dawson, who I’ve written about elsewhere. She went to the hospital for breathing challenges but refused to leave after medical personnel determined that she was stable and discharged her. Ms. Dawson insisted that she wasn’t well. The police were called. She was arrested for trespassing and disorderly conduct. Ms. Dawson collapsed as the officer was attempting to put her in the patrol car, and she was dead from a pulmonary embolism (blood clot to the lungs) in a matter of hours.
Might Ms. Dawson have died anyway—even with the most attentive care? Possibly. The hospital settled a lawsuit with the family in 2017. Of course, settling a lawsuit doesn’t necessarily mean that there was wrongdoing (although given the information that has been made publicly available, I certainly think that Ms. Dawson was wronged).
I’m interested in what drove the hospital to call the police in the first place. One might assume that Ms. Dawson’s behavior surely must have been out of bounds—dangerous even—to prompt such a response. However, given much data on how even neutral behavior by black people is regarded as hostile and the many high-profile instances of “x-ing while black” that involve police being called on black people for the most innocuous of reasons, I contend that the stakes of being labeled “difficult” are quite different for black patients.
Yet, in the past few decades, the general public has been encouraged to “take ownership of their health,” to not be shy about asking questions, to demand to be taken seriously when one experiences symptoms. In other words, there has been a great push for patient self-advocacy. But “appropriate” self-advocacy is likely to refer to a very narrow set of behaviors and modes of presentation. So perhaps one of the goals of this chapter is to generate a conception of self-advocacy that takes seriously the reality that the rules are often different for black patients.