A few years ago I got an email from a surgeon at an Ivy League medical school whose wife had a horrible neurodegenerative illness. His name was Dr. Knife. His wife’s illness was progressing and he was told by her neurologist, one of the world’s leading experts in this condition and another doctor at this Ivy League Medical School, that there was nothing more that could be offered. His name was Dr. Brain. Dr. Knife was understandably distraught by the situation. With low hopes, he reached out to me at the suggestion of a medical student familiar with my work in neuropalliative care.
I spent an hour with Dr. Knife by phone and covered the things that I usually would in such a situation—a practical roadmap for what’s ahead, suggestions to support him as a caregiver, discussions around how to keep what’s most important to him and his wife front and center as this disease progresses—and at the end of the call, he expressed both gratitude and surprise. “Why aren’t more doctors doing this?” he asked.
While I was used to seeing our system fail “ordinary patients” in these situations, I was struck by the fact that the patient in this situation was not ordinary; he was Dr. Knife, an Ivy League doctor. Had Dr. Knife called Dr. Brain for a consult, perhaps pretending that his wife was a patient and that he needed guidance about her future as he was considering a major operation, I imagine Dr. Knife would have gotten much more honest and useful information.
How was it possible that Dr. Knife could have such different interactions with Dr. Brain based solely upon what role he was in? When seen as a surgeon, Dr. Brain assumes he is competent to handle the truth and treats him as a peer. When seen as a patient, Dr. Brain is patronizing, makes decisions about what information Dr. Knife could or could not handle, and, no matter how good or bad Dr. Brain’s bedside manner is, does not treat Dr. Knife as an equal.
When Dr. Knife reached out to me, it wasn’t simply to get a second opinion—I agreed with Dr. Brain’s diagnosis—it was for a different type of care, a person-centered approach. Why indeed weren’t more doctors treating their patients as complete and whole people, as equals? This wasn’t simply a matter of competence or training.
In the context of 2020, with multiple civil and human rights concerns coming to light in the U.S. and around the world, the core problem comes to light as a human rights issue. Certain people are being treated as inferior based on a label (“patient”) imposed upon them by another group of people with societal privileges (“doctors”). What was so strange to me about this particular situation, and what helped me to see how arbitrary and meaningless these labels were, was how fluid it was. If we imagine Dr. Knife running from the OR to make a doctor’s appointment with his wife and then run back to the OR, we can see the same person go from the status of a superior being (surgeon) to an inferior one (patient) and back to a superior one all within the course of an hour.
Clearly, the problem is not that Dr. Knife is becoming more or less of a person. Rather, the problem is the medical system and culture that treats him as more or less of a person based on the roles it assigns him. If these roles can change within moments, these differences in treatment and status are worth questioning and, I would argue, worth eliminating.