Columbus, Ohio, United States
|Last Supper by Leonardo DaVinci. Photo by Paris Orlando. November 2019. Public Domain|
“He’s here for aspiration pneumonia. He doesn’t want a G-tube even though we tried to explain to him that if he continues to eat and drink by mouth, this will keep happening and he will eventually die from it. Can you come down and see him?”
The palliative care fellow, Don, and I answered the call from the hospitalist team. Their patient, Mr. S, had been admitted for aspiration pneumonia for the third time in several months. His modified barium swallow had shown copious amounts of fluid rushing into his trachea; it was a surprise that he could eat or drink at all without choking and gasping for air. He had been seeing speech therapy for several years, and they had recommended the works: chin tuck maneuver, small sips, to only consume purees and thickened liquids. But Mr. S had ignored all of their suggestions and returned to the hospital time and time again.
During this admission, the hospitalist team discussed with him the option of placing a gastric feeding tube. They had explained the risks of continued oral intake, but he had declined the procedure. We were called to evaluate his capacity to consent—to make sure he was fully informed and understood the implications of his decision—since he had yet to provide a logical explanation for it.
As we walked into his room, the hospital police officer entered as well. He had been called by Mr. S to investigate a dispute at home. Over the next several minutes, our patient attempted to explain that he had trespassers and wanted them removed, even though he had invited them into his home. There was nothing the officer could do, since they had been invited, and Mr. S grew more and more exasperated. Eventually the police officer left, but gave him the number of the local police, hoping that they could offer some insight into his predicament. Mr. S was momentarily placated, but his behavior had not assuaged our concerns about his capacity.
To build trust, we started by inquiring about his concerns at home. He initially continued to perseverate, requesting that Don go to his apartment and evict the trespassers, but eventually relented and opened up about his life. He had lived all over the country after his time of military service in Vietnam. He had a girlfriend who thought of herself as his wife, but they were estranged. He had been married several times before that but never divorced; his wives just left him without formalizing the separation. He had wanted to sign the papers, but he stored all of his important documents in his car, and his car had been stolen. To Don and me, the fact that his automobile was the most secure location in his life seemed ludicrous, crazy, and illogical, as was that he had been married several times without ever legally getting divorced. It did not make any sense to us, just like his conversation about the trespassers in his apartment.
John Keats introduced the concept of negative capability1 as that which occurs “when a man is capable of being in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.” Even in his relative youth, Keats had relished the search for truth independent of logic and objective facts. In this way, the seeker of truth immersed himself in his experiences to better make sense of them without being blinded by his own perception of reason, as human truth and certainty could feasibly contain logical fallacies and contradictions.
With Mr. S, we encountered countless logical fallacies and contradictions when perceived through our own personal lenses. In fact, the inability to use reason in a meaningful way is grounds to claim that a patient has impaired decision-making capacity. But in this instance, we could use negative capability to further understand our patient. In “The Practice,” William Carlos Williams describes each patient he encounters as a poem to be interpreted.2 Instead of simply looking at facts and figures, we can make sense of the poetry of the patient by letting go of logic and listening more broadly and holistically.
After some time, the nurse, Simona, came by with his lunch: a sandwich, some vegetables, chocolate pudding, and a can of lemon-lime soda. We encouraged Mr. S to eat his lunch while we kept him company. He immediately placed a straw in the can of soda and began to take large gulps. He coughed after the first few mouthfuls.
“Oh no, Mr. S,” said Don, “small sips! Otherwise you’ll just keep choking.”
He nodded but continued slurping his soda, followed by the predictable violent fits of coughing. Simona took the can and removed the straw. This time, he tilted the can far back and swallowed a large amount of liquid. A “gulp, gulp” sound was followed by profuse coughing. The next time he took a sip, Don and Simona physically tilted the can to a more appropriate angle, reminding him to “take small sips.” He forcibly tipped the can up to extract more soda, against their efforts. Pouring small sips of the soda into a miniature cup also did not help because he threw it back like a college student on his twenty-first birthday.
Mr. S was again ignoring treatment recommendations without conveying any reason to us, only a childlike petulance. Nothing he did made logical sense. Did he understand the risks of his behavior? Could he apply facts to his own circumstances? Could he use reason and logic in this situation?
Don and I persisted. Eventually we arrived at the most pressing issue: what was most important to Mr. S.
“Sir, you know why you are here in the hospital, right?” probed Don.
“Yes, I have pneumonia,” responded Mr. S.
“And do you know why you have pneumonia?”
“When I swallow, some of it goes into my lungs.”
“And do you understand how they would like to treat you?”
“Some sort of stomach tube.”
Don went on to explain the concept of a gastric feeding tube, and Mr. S seemed as if he had changed his mind, that he was now willing to have it placed.
“As long as I can still eat and drink afterwards.”
That was not what we had wanted to hear. “Oh, no, sir, eating and drinking is what is causing your pneumonia. If you get the G-tube placed, we would feed you through the tube, directly into your stomach.”
“So I would never eat again?”
“Well, small sips just for taste here and there would be fine, but no, you wouldn’t eat again. The concern is that when you eat, you are risking pneumonia, which will make you sicker and sicker, and one of those episodes could kill you.”
“But I need to eat. I love to eat.” Mr. S burst into tears.
There it was. We had finally found the lack of understanding, or rather, the gap in understanding. Mr. S, this gruff, African American Vietnam War veteran, who had been through all of the ills that society had imposed upon him, finally let down the wall that he had put up to survive his life. Through his tears, he had decided to share his values with us and with himself, possibly for the first time. He loved to eat. His love was rooted in memories—food reminded him of happiness, of his stable childhood growing up at his grandmother’s home—but also sensations—he had been taking large sips of his soda because he savored the feeling of the carbonation and acidity burning his esophagus. There was the logic. There was the reasoning. We had thought that we had the only rational solution, but in Mr. S’s story, there was another one, however irrational it seemed to us initially.
Mr. S needed a few more days to weigh his options and to make his decision, but he did so with a more complete understanding of the truth. It was a truth based not only on objective facts, but on the poetry of his life.
- Keats J, Scudder HE, Whalen P. The complete poetical works and letters of John Keats. Boston, MA: Houghton, Mifflin and company; c1899.
- William WC. The Autobiography of William Carlos Williams. New York, NY: New Directions Publishing; 1967.
NIMISHA BAJAJ, MD, PhD, graduated from the Indiana University School of Medicine in 2019. In the middle of her medical training, she took a five-year leave of absence to pursue a PhD in biomedical engineering at Purdue University from 2012-2017. During her time in medical and graduate school, she had many loved ones face terminal diagnoses and through that experience developed an interest in medical humanities and narrative medicine. She is currently a pediatrics resident at Nationwide Children’s Hospital in Columbus, OH.