A patient revolution for careful and kind care

An excerpt from Why We Revolt: A Patient Revolution for Careful and Kind Care.

It was late at the premier teaching hospital in the country, and we were overworked and overwhelmed. Those patients in most trouble had made it in, but many waited outside, a domino line from the threshold of the emergency room to the edge of the hospital. Those inside were on gurneys in the treatment areas. They were in the hallway, on chairs, or on the floor. It was the era of hyperinflation and terror in Lima, Perú. I was one year away from graduating from medical school.

A corpulent and inebriated man came in with a large scalp laceration. One of my colleagues began to clean the wound. She misjudged whether he would need local anesthesia and did not use any. He responded abruptly and violently, taking a bottle with some colored antiseptic solution and hurling it at her head, missing narrowly. Her scream and the red vitreous splash in all directions acted as the Bat Signal. Other doctors in training came rushing to her treatment bay. They first tried to restrain the patient. Soon, the gang in white coats was holding him down and beating him up. When it was over, the man had the original laceration and the swollen, bruised, and cut face the class of 1995 gave him.

What he received in punches, we also delivered verbally to anyone who complained and whom we chose to not simply ignore. This was our emergency room, and these people, the patients, were here to bother us, to interrupt us, to make our day more difficult. We dehumanized the “laceration,” the “foreign body,” or the “appendix” without seeing the destitute and illiterate patients behind those labels. These subhumans were not only unfortunate and fortuneless but, in our eyes, were also careless, irresponsible, and stupid. Like a potent drug, equal parts efficacy and bitter pill, our emergency room could save a life while demeaning it.

Decades of psychological and sociological research explain the behavior of this white-coated mob. But what about the hospital rounds led by senior clinicians? A student six years my senior wrote a graduation thesis in which he noted that rounds at the patient’s bedside almost never acknowledged the patient’s existence: no greeting, small talk, explanations, or elicitation of worries. Perhaps a question, but its purpose was to solve the diagnostic puzzle. Perhaps an exam, but it was to detect a sign. The patient as object, the subject barely noticed.

Yet no one told us we, the trainees, were lacking in care. We ran a complex system of redistribution by which we asked more-affluent patients to bring extra supplies that we would store and use to help poorer ones. We would use one patient’s social assistance card to get free supplies for another who narrowly failed to meet the program’s requirements. Thanks to this work, patients received tests, treatments, and operations; they got better and went home; and we received recognition. Perhaps we cared, but frankly, most of our work was completed to impress our senior residents and attending physicians with our resourcefulness and efficiency.

Occasionally, this churning would be interrupted. Mostly at night, when the hospital was quiet and slow. A sudden frameshift. An abrupt double take. The clinician suddenly noticing the person in the patient. A chair pulled out. A chat.

Lines thrown from one boat to another. Permission to board.

“Who came to visit you today? Who is in that picture at your bedside?” For an instant, the boats approached, abutted, and their wakes kissed.

Soon, they must diverge, drift, and sail away.

The clinician stands up as a new admission, a “pneumonia,” rolls in.

Elsewhere in the Peruvian hospital, the lab receptionist was sipping his coffee, mixed with the exact amount of milk. Earlier he had filled a bucket with tubes he’d discarded because they did not contain the exact right amount of a patient’s blood required for a test.

“No, no! The patient was a tough stick!” a trainee cried.

The lab receptionist remained unperturbed. The sample was lost, the test not run, and the intern looked bad on rounds. Sometimes samples of several patients were lost or discarded because they came in seconds after the deadline. The receptionist sat and sipped his coffee, satisfied that his exacting work elevated the quality of the laboratory. The intern back at the bedside explained, “I am sorry. I have to draw your blood again.” The cruelty of the protocol, rigidly applied.

On the other side of the world, 18 years later, I met the foremost American diabetes expert. He prescribes the latest medicines. He must do so, he said, because when he goes to meetings or colleagues consult him, he is expected to have experience with the latest advances and technologies. Thus, his patients are among the first to receive recently-approved drugs. Pharmaceutical representatives know this, so they hand him glossy brochures about new medications. He is also often invited to speak at conferences about the experience he has accrued with these drugs. Once, he and I coincided at a diabetes conference in India. One could easily see the addictive allure of his position. He was treated to luxurious events with guests from the Bollywood scene. At the end of his competent presentation, the host asked the audience to “stand up for a standing ovation.” The expert left in a black stretch limousine. In his talk, he had recommended that local clinicians use treatments with a cost and burden difficult to justify based on existing research. These clinicians, believing his pitch or, perhaps, hoping for his status, would switch their patients — like those of the American guru but much poorer — to the latest drugs. The cruelty of fame.

Back at home, it was time for my patient to refill a prescription. For the pharmacy to refill that prescription, however, the request must be made within 10 days of the previous fill running out. First, the patient remembered to call too early, 11 days before the refill was needed. The system failed the stress test of kindness. “I cannot save your request and process it tomorrow … you need to call again tomorrow.” She forgot. A few weeks later, the patient explained to me why she did not take all of her medicines. “My condition seems out of control now,” she said. Everyone was just doing their job amid the cruelty of their routines, the cruelty of petty rules.

Victor Montori is an endocrinologist and author of Why We Revolt: A Patient Revolution for Careful and Kind Care.

Image credit: Shutterstock.com

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