Lessons From a ‘Difficult Patient’

When he was assigned his case, he was 58. All of his friends who had been diagnosed with the same disease at the same time, including his younger brother, died.

One of the youngest students in my medical school class was me. To follow patients with chronic diseases to their clinic appointments felt like a formality to my classmates whose parents were doctors. For me, it was a revelation.

On the day of our first appointment, I stood on the floor of our hospital's clinic lobby and tried to hold my clipboard in a way that looked natural. The doctors and researchers walked past me to the elevators, coffee or cellphone in their hands.

I called his cellphone after 30 minutes without finding him. He wouldn't be coming for his appointment today, he said, and would have to call back, as he was on a call with the receptionist. He hung up before I had a chance to reply.

A receptionist is on the phone in one of the cubicles. She was red in the face as she spoke and stopped. She sighed and gestured back at her phone.

I had my phone in my pocket. He said this week was bad because he had a cold. It wasn't worth it to go to a checkup a whole day. He thought it was a waste of time.

Colds are the leading cause of death for people with cystic fibrosis, according to my research. The man said he was stressed out. I asked if he would allow a doctor to help him. He agreed to go to the clinic. The receptionist was not convinced that the doctor really wanted to see Sal.

I was learning that the person I was learning about was called a "difficult patient." He asked his doctors if they had read his chart carefully. How many of thebacteria species are found in the lungs of people with the disease? Correct answers were rewarded with more difficult questions about antibiotic resistance. If the doctor said he or she didn't know, he glared silently.

I stayed with the doctors who were talking to him. They set aside their differences of opinion and banded together to complain about him, because he demanded a new doctor every other visit.

The clinic had been struggling for months to find a new pulmonologist after the retired one. Many adult pulmonologists saw his ailment as a child problem that they wouldn't have to deal with, and ignored its nuances. He was correct in the case of several doctors.

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I went from observing to having patients of my own in the hospital after medical school. I wrote medical to-do lists for each patient. As if my patients were machines in a body shop, I learned a 21-point inspection to help fix malfunctioning parts.

I was shown how to set the rates by my doctors. They made these decisions with ease. I had limited time to make all of these plans because I was responsible for all of them. We will start you with easy patients.

A man needed emergency surgery to remove an oxygen-starved section of his bowels. A plastic bag was placed around the opening where the stool left his body to keep it safe.

He didn't resist or chide me for my cold hands when I woke him up. He didn't ask follow up questions. I had allotted a certain amount of time for the rounds on him. My colleagues were correct that he was an easy assignment for a medical student.

Critically ill patients often detach themselves from what they must endure, according to the nurses. If I woke up defecating out of my abdominal wall, they asked me to imagine who I was. Patients on the verge of death are not always inquisitive. The hospital's hands are filled with them.

I became better at breaking people down into their machine parts after a year and a half on the wards. The ability to distill patients' histories into a single sentence was judged by my evaluators during medical rounds. Patients succinctly told me what would fill in the blanks of my medical one-liners and didn't cloud the picture with their own thoughts

Doctors were able to take total control of passive patients. After patients left the clinic, we were able to take no responsibility for that. I didn't know what happened when a patient with a bag of stool had to figure out how to clean it himself.

He took me for a drive in his car that summer. The disposable income my wife and I have for fast cars is one of the reasons why we don't have children. The ducts that allow sperm to be ejaculated are lost by male patients of the disease. We went to his favorite restaurant.

There were pictures of the brothers on the mantel. There was a bunch of binders next to these. Statistics were kept of his lung function, muscle strength and respiratory symptoms. Before FitBits and Apple Watches, he did this manually. Clinical trials and review articles were collected by him. There were three five-inch binders on his desk.

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Doctors took bets on who would catch the hot potato next month and be expected to wade through thousands of pages in 30 minutes. He had a disease that these binders embodied. This asset was seen as an albatross.

I learned that patient qualities that helped their health, not the doctor's, were the most important. Patients 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 were not praised by doctors.

Patients so overwhelmed that they stopped looking at their illnesses at all were his opposites. A boy with severe food allergies who won't carry his EpiPen with him, a double amputee who is bed-bound, and a Dialysis patient who is gray from uremia are just some of the people who are known to every doctor.

He didn't bring his binders to his appointment. He said that they were becoming too cumbersome and that he had begun to write down any important notes. All of them had the same outcome, that Sal was getting sicker and weaker. I sat in on an appointment where the man complained that he couldn't lift as much as the year before. What would he do about it?

There was nothing the doctor could do about his gray hair. I was expecting the doctor to back up the declaration with numbers and parameters for lung function. He was quiet for the rest of the appointment and seemed to be concentrating on himself.

When patients come to you at the end of their rope, you have no more solutions to offer, and that's what he said in the email I received later that week. I brushed off the message because I thought I was studying for an exam.

I was close to finishing medical school. Actors were hired to play patients and give feedback to us as we neared the end of our rotation. They said it made them feel better when they saw you break the news. Half-insulted and half-guilty we laughed.

I made decisions about patients coolly and without emotion. I didn't reveal much about myself. I didn't think about my patients after I left.

I didn't maintain any of these convention. The two of us continued to email each other. I sent updates about medical school, vacation travels, relationships, and my plans for the future, as well as an update on his health. I had an email bounce back to me because I had lost my friend.

On a late night home from the hospital, I read Sal's email again. He told me to prepare a speech in the blue light of my laptop screen. I had a command of three things. I had kept my distance. I was starting to feel better about my job as a doctor. I don't know why I felt so empty.

The speech was written for him. I told him to stop blaming himself for his weakened state. Without the binders, his brother's photo could sit on the mantel alone. I wish I had given him this speech, but I know why I didn't.

He didn't seem to like speeches from his doctors. He distrusted everyone at the clinic before his appointment even began. He would condemn his team's command of medicine and declare the appointment a waste of time if there were no prescriptions or procedures for the problem he was describing.

He had mechanized us as well. He expected his doctors to know a lot about technical matters, but they didn't. At some point, he would accept only a doctor's answer, and he had come to expect that.

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My students are being asked to give a one-line simplification of a person's suffering. My focus is on which diagnoses would be the most dangerous to miss. I don't like to listen to the personal stuff.

Modern medicine has given me and my fellow doctors the ability to pin down patients. Their free motion makes it hard for us to classify them. Patients don't feel understood when pinned on an exam table. We have to cover everything in an appointment that lasts 30 minutes or less.

Medicine has tried to shift more towards seeing patients on their terms with services like open notes and hospital services at home. The burden of medical knowledge can make it hard to have intimate conversations.

I don't know any of my patients as I don't know anyone who knows me. Patients treat me differently even if I had infinite time to see them. When he took me under his wing, he didn't hold me accountable for my responsibilities.

There is a speech that was inspired by it. Patients reach the end of their ropes for a variety of reasons. Managing the medical reasons is a challenge for me sometimes. I am reminded of what competency feels like when I am the patient at a bank or courtroom. That makes me think of a timid young woman who earned her first patient's trust by being kind and sincere. She is starting to see patients again.