“Being in the hospital is degrading.”
That was Mr. Q, about one week into his eventual two-week admission for recurrent pneumonia and later placement of a pacemaker in an already compromised heart. He had already been through a lot: a heart attack and cardiac bypass in the 1980s, then prostate cancer, and now, several years later, myelodysplastic syndrome. This blood disorder had left him vulnerable to infections like the pneumonia that brought him to the general medical service at the Brigham. When I met him that first night, I checked his birth date twice because he looked at least 10 years younger than his age. It was obvious he was a vigorous, fun-loving man—a father of four and grandfather of 10.
A few days into his hospital course, he was so sick my resident prepped me in case a code was called. He told me I’d be the one paged first and that I’d have to be able to give the code team all the relevant information about Mr. Q in a succinct fashion since they wouldn’t be familiar with his case. As the subintern who had admitted him, I was immersed in his care, examining him each morning, touching base with all his physicians, and getting to know him and his illness in depth. He would spike fevers through the strongest antibiotics in our arsenal, so each day I dreaded the morning sign-out from the night team and hoped he’d made it through without incident.
It was decided that Mr. Q needed thoracentesis, in which a catheter is inserted into the pleural cavity to withdraw fluid. The first of these procedures was diagnostic: we wanted to get a small sample to identify a pathogen and learn more about why he was accumulating fluid around his lungs. As I was getting the room set up, he looked at me with a mixture of frustration and despair. “Mr. Q,” I said, “I’m just getting to know you, but I get the feeling that you have control over every aspect of your life—you’re such an active guy—and it must be very hard to know that there’s very little you can control right here, with this disease.”
“You hit the nail on the head,” he said. “I just can’t seem to beat this thing. There’s nothing I can do.”
A week later, he emerged from the fevers and was a new man. The charm that was present even during the darkest days of his spiking fevers, hacking coughs, and low hematocrits and platelets requiring multiple transfusions was in full force. With his oxygen requirement decreasing, his outlook brightened, and discharge to home was within reach. We tapped him again, drawing almost a liter of fluid from his lung. His breathing greatly improved.
But then his heart began to give us trouble, dropping to rates so low that he was on constant monitoring, and we had atropine at the bedside just in case. He suffered multiple episodes a day in which he would get light-headed, nauseated, and flushed, and then it would pass.
The doctors determined he needed a pacemaker. It was during this period that he told me how being in the hospital was “degrading.” I asked him what he meant. He told me that he felt like he couldn’t do anything for himself. He was trying to understand why his body was failing him. Having just turned a corner with the pneumonia, he felt he had taken another step forward, only to be set back once again.
Mr. Q is a former police officer, and we talked about pattern recognition. He had a lot of time to think in the hospital, and he was trying to piece together the clues to his bradycardic spells. Each day we’d discuss what he thought was happening and compare notes with what the team thought was wrong. Mr. Q, with his police training, was gathering data just as we were. We were detectives, trying to understand what his symptoms meant.
A few days after he received the pacemaker, and after a third thoracentesis, he walked out of the hospital, two weeks to the day after he was admitted. He returned the next week as an outpatient, receiving blood and platelet transfusions, but he told me he was feeling stronger every day. Speaking with him five days after discharge, he told me he’d walked out by himself to get the paper that morning.
Mr. Q’s story is still unfolding, but my experience of being part of the team caring for him and our daily interactions have reinforced how illness, and being in a hospital, can be emotionally devastating. Uncertainty, on so many levels, permeates the experience. For Mr. Q, the situation and plan of care changed almost minute to minute.
It was almost a farce to make a plan for the day, when his condition was so unstable. And yet we tried to do this each day, with the knowledge that things would change as the clinical scenario changed, as new data became available, and as the team received the input from specialists called in to consult. The idea of a plan—and of returning some modicum of control and normalcy to the patient—is something that I really began to appreciate with Mr. Q.
In the end, which means, as of this writing, Mr. Q is at home with his loving and supportive family, planning his next road trip in his souped-up RV, and, I’m sure, trying to figure out how to beat his illness.
Erica Seiguer is an MD–PhD student studying economics in Harvard’s Doctoral Program in Health Policy.
