Lessons From a ‘Difficult Patient’

3 months ago 12

Essay

Sal was the kind of patient that doctors strive to avoid. But for one medical student, he provided an education in compassion.

Credit...Lucy Jones

Published Oct. 18, 2022Updated Oct. 21, 2022

Sal was 58 when I was assigned his case. Sal had been diagnosed with cystic fibrosis in the 1960s and was considered an old survivor; all his friends who had been diagnosed at the same time, including his younger brother, were dead.

I was 21, a few weeks out of college and one of the youngest students in my medical school class. Our assignment, to follow patients with chronic diseases to their clinic appointments, felt like a formality to my classmates whose parents were doctors and who already knew what went on in hospitals. But for me it was eye-opening.

On the day of our first appointment, I stood waiting for Sal on the freshly buffed floor of our hospital’s clinic lobby, fidgeting with my white coat and trying to hold my clipboard in a way that looked natural. The morning wave of physicians and researchers speed-walked past me to the elevators, coffee or cellphone in hand, eyebrows furrowed.

After 30 minutes passed with no sign of Sal, I called his cellphone. He wouldn’t be coming for his appointment today, he said, and would have to call back; he was on a call with the clinic receptionist, giving her a piece of his mind. Before I could respond, he hung up.

I looked up and saw, three cubicles away, a receptionist on the phone. She was red in the face; she kept starting to speak and then stopping, as if being interrupted. Eventually she hung up, sighed and walked over to a neighboring receptionist, gesturing back at her phone.

My phone buzzed in my pocket: Sal. This week was terrible, he said, because he had caught a cold. It was no use blowing a whole afternoon by going to a routine checkup. It was a waste of time, he said — time he didn’t have.

As we talked, I learned that colds are a major concern for people with cystic fibrosis; for many it is the cause of death. “I’m stressed out,” Sal said, adding an expletive. I asked if instead of trying to ride this out himself, he might let a doctor help him. He was reluctant but eventually agreed to come to the clinic. But when I asked to squeeze Sal into the afternoon schedule, the receptionist looked incredulous: Was I sure the doctor really wanted to see Sal?

Sal, I was learning, was what medical people call a “difficult patient,” one who doctors avoid. I watched him quiz his new doctors to see if they had read his chart carefully. How many of the bacteria species that colonize the lungs of cystic fibrosis patients could they name? He rewarded correct answers with even harder questions about local antibiotic resistance patterns. If the doctor said he or she didn’t know, Sal glared quietly; if they made up an answer, he was merciless.

After Sal’s appointments, I stayed behind with the doctors who were discussing his case. They set aside their medical differences of opinion and found solidarity in complaining about him: Did he have any idea that everyone else waited graciously for whoever was available, while he demanded a new doctor every other visit?

Sal’s pulmonologist of 30 years had retired, and the clinic had been struggling for months to figure out who would take on Sal’s case. Since not many cystic fibrosis patients had made it to Sal’s age, Sal suspected that many adult pulmonologists, especially the older ones, saw his ailment as a pediatric problem that they wouldn’t have to deal with, and ignored its nuances. In the case of several doctors I met, he was right.

The next year of medical school I went from being an observer to having patients of my own in the hospital. My job was to write medical to-do lists for each patient, covering every organ system. I learned a 21-point inspection of sorts to troubleshoot each malfunctioning part, as if my patients were machines in a body shop.

My supervising doctors showed me how to set the rates at which my patients’ kidneys produced urine and their lungs expelled carbon dioxide. They made these decisions quickly, with little self-doubt. Hormones, fluids, wires, tubes, sedatives, paralytics; the bone’s ability to remodel, the heart’s strength to contract — I was responsible for all of these things and had limited time to make all these plans. Don’t worry, I was told, we’ll start you with easy patients.

One such patient was a man who needed emergency surgery to remove an oxygen-starved section of his intestines. The remaining segment was brought through his skin and stitched beside his belly button, a plastic bag taped around the opening where stool now left his body.

When I woke him up before dawn to examine his wound, he did not resist or chide me for my cold hands, as Sal would have. He didn’t challenge the plan or ask follow-up questions. Rounds on him never took more time than I had allotted. My colleagues were right: He was an easy assignment for a medical student, because he was a shell of a person.

The nurses in the I.C.U. told me they had seen many patients like him — that critically ill patients often detach themselves from what they must endure. They asked me to imagine waking up defecating out of my abdominal wall and if it would change who I thought I was. Patients on the brink of death are not demanding and inquisitive like Sal. They are formless putty in the hospital’s hands.

A year and a half on the wards and a few hundred patients later, I had become better at breaking people down into their medical machine parts. My evaluators judged this skill during medical rounds, when we distilled patients’ histories into a single sentence, a feat made easier with patients like the man with bowel surgery. These patients succinctly told me what would fill in the blanks of my medical one-liner and didn’t cloud the picture with any personal thoughts of their own.

Passive patients were “easy” because we doctors could efficiently take total control. But once patients left the clinic we could promptly absolve ourselves of that responsibility. I had no idea what happened, for instance, when my patient with bowel surgery had to figure out how to do groceries and clean his bag of stool himself.

That summer, I visited Sal’s house in South Philly, and he took me for a drive in his yellow Viper. “The great thing about not having kids is all the disposable income my wife and I have for fast cars,” Sal said. (Male cystic fibrosis patients lack the ducts that enable sperm to be ejaculated, rendering them infertile.) We sped along back roads to his favorite Italian restaurant.

On the mantel of Sal’s home were photos of him and his younger brother. Next to these was a pile of medical binders. Sal kept daily records of his lung function, his muscle strength and his respiratory symptoms, compiling statistics monthly and yearly. He did this manually, before the advent of FitBits and Apple Watches. He also collected clinical trials and review articles on cystic fibrosis. Sal was on his third five-inch binder.

The doctors made fun of Sal’s tomes and took bets on who would catch the hot potato next month and be expected to wade through his thousands of pages in 30 minutes. I thought of the meticulous attention to his disease that these binders embodied. How absurd that this asset was perceived as an albatross.

It was my first lesson in recognizing patient qualities that benefited their health but not the doctor’s workflow. Doctors did not commend patients who expected to understand all their test results, or who pushed back against treatments that were only weakly supported by evidence, or who wanted to talk to a doctor on the phone instead of waiting a week and missing a half-day of work for an in-person appointment.

The only patients deemed more difficult than insistent patients like Sal were his opposites: patients so overwhelmed that they stopped wanting to pay any attention to their illnesses at all. They are well known to every doctor: a dialysis patient, gray from uremia, eyes glazed over when asked why she missed her last session; a double amputee now bed-bound, refusing home visits; a boy with severe food allergies who won’t carry his EpiPen with him.

Sal did not bring his binders to his next appointment. They were becoming too cumbersome, he said, so he had started to simply jot down any crucial notes. These all had the same upshot: Sal was growing sicker and weaker. During one appointment I sat in on, Sal complained that he could not lift as much as he could the previous year: Why was that? And what could he do about it?

The doctor pointed to his own gray hairs — advancing age, nothing to be done about it. I expected Sal to press the doctor to back up this proclamation with numbers and parameters for lung function, or to demand a new doctor. Instead, he was quiet for the rest of the appointment and seemed to shrink into himself on the examining table.

Later that week Sal wrote me an email: Prepare a speech for those moments, like the one that week, when patients come to you at the end of their rope, and you have no more solutions to offer, he said. I think I was studying for an exam, and brushed off the message.

By now I was almost done with medical school. As we neared the end of our rotations, actors were hired to play patients and give us feedback on our bedside manner. They said things like, “It made me feel better when you looked me in the eye to break bad news.” We laughed, half-insulted, half-guilty.

I practiced “therapeutic distancing” to make decisions about patients coolly and unemotionally. I didn’t share much about myself or display vulnerability or uncertainty. I practiced not thinking about my patients once I got home.

With Sal I maintained none of these conventions. He and I continued to email back and forth. I sent updates about medical school, vacation travels, relationships and my plans for the future; Sal updated me on his declining health. Then one day my email to Sal bounced back, because he had died.

Years later in my training, on a late night home from the hospital, I reread Sal’s emails. Bathed in the blue light of my laptop screen, his advice about preparing a speech spoke to me as if from a ghost. I now had a command of anatomy, pathophysiology and pharmacology. I had impressed my supervisors and diligently maintained therapeutic distance. I was finally starting to become confident as a doctor. Why, then, did I feel so empty?

At first, the speech I wrote was for him. I told Sal that he should not blame himself any longer for growing weaker. He had fought his ailment valiantly, and his brother’s photo could occupy that space on the mantel alone now, without the binders. For a while I wished I had given him this speech, but I knew why I didn’t: I wasn’t his doctor.

Sal did not seem to want speeches of that sort from his actual doctors. He had become unpleasant toward members of the clinic staff, distrustful of everyone before his appointment even started. If Sal was told there were no prescriptions or procedures to fix the problem he was describing, he would condemn his team’s command of medicine and declare the appointment a waste of time.

It was not just we who had mechanized Sal; he had mechanized us, too. He expected near-infinite knowledge from his doctors on technical matters but dismissed their opinions as individuals. Sal had come to expect only a machinist’s answers from doctors, and at some point that became all he would accept.

Now I am the speed-walking supervisor asking my medical students to provide a one-line simplification of a person’s suffering. My focus is on which diagnoses would be most dangerous to miss and how behind I am with my other patients. I often tune out the personal stuff.

Modern medicine has trained me and my fellow doctors to pin patients down, like beetles to be examined on a bulletin board. Their free motion impairs our efficient taxonomy of them. Unsurprisingly, patients do not feel well understood while pinned on the paper roll of an exam table. But how else can we cover everything we must in an appointment lasting 30 minutes or less?

To its credit, medicine has tried to shift further toward seeing patients on their terms, with telehealth visits, open notes and hospital services at home. But even with these, the titanic burden of medical knowledge to which doctors must do justice can crush opportunities for intimate conversation.

I know none of my patients today as I knew Sal, and none of them know me as Sal knew me. Even if I had infinite time for them, patients treat me differently as a full-blown doctor. I carry responsibilities — to be knowledgeable, skilled, punctual — that Sal did not hold me to when he took me under his wing.

Now the speech that Sal inspired is directed inward. I tell myself that patients reach the end of their ropes for medical reasons, personal reasons and often a mix of the two. Sometimes just managing the medical reasons is challenge enough for me, and that’s OK. But when I’m the “patient” at a bank or courtroom or post office, I’m reminded of what competency feels like without humanity. That helps me summon that timid young woman on the buffed lobby floor, who knew nothing about medicine but earned her first patient’s trust by being kind and sincere. She has started seeing patients again.

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