SACHIN H. JAIN
I.
Communication
Speak clearly, if you speak at all;
Carve every word before you let it fall.
OLIVER WENDELL HOLMES SR.
More Like Oprah
Alaka Ray
I HAVE COME TO SEE that in the practice of medicine the goal is not necessarily to cure people. Mostly it seems to be about doing as much as a patient will let us do. Usually that means doing a lot. Some patients want the sophisticated imaging of an abdominal CT scan, all the blood tests, and a bone scan thrown in for good measure. They dutifully take their medications and succumb to dozens of probing examinations.
Recently, however, Ms. A. from Trinidad, a retired seamstress, stayed in the hospital for six days; and when she left, it wasn’t because she was any better than when she came in. She had what we called “vague complaints.” She was a tiny woman who had lost thirty pounds in the last year and sometimes spit up blood. She had a pain in her neck, but if asked to characterize it, locate it, or place it neatly on our handy ten-point scale, she adamantly refused, saying, “How can you know it when you don’t feel it? I don’t know your pain; you cannot know mine.”
We all nodded.
And so the tests began. But after an abdominal CT, a lot of blood work, a test for tuberculosis, and an HIV test for AIDS, she stopped. She just wouldn’t. It was impossible to ask her to drink nasty prep for a colonoscopy, and she refused IV access for other tests. The time had come for drastic measures. We actually started talking to her. The house staff began tentatively suggesting to me after rounds, “Hey, do you think you could go see if Ms. A. will agree to this?”
But talking to her didn’t make anything easier. Her view of us was not flattering, and her insistence that if she had money she would have gone to Canada for treatment left us feeling a little discomfited. It seemed unfair that we had to not only come up with an exquisitely detailed plan for her every morning but also sit and convince her of its merits—only to have her turn us down.
As my talks with her became more involved, I began to worry more and more. One afternoon in particular, I discovered that she apparently knew what illness she had. It was a cancer that had been featured on Oprah. Ms. A. had actually written to Oprah for more information and a spot on the show.
“Of course, they already had someone with this disease on the show, so I guess that’s why I can’t go,” she explained.
This revelation did nothing to reassure the house staff. And when we found that the hospital chaplain had written in the chart, “Patient feels that she must go to California and find Oprah,” we decided to call psychiatry, although not without wondering if we should tell the patient that Oprah lives in Chicago.
Ms. A. vehemently refused to see a psychiatrist or take any antidepressant medication, although our depression screening was positive for every symptom except guilt. Her beliefs about her body were unshakable. She didn’t like what antidepressants did to her, and she didn’t think we had gained the trust of her body enough to unravel its secrets.
In some ways, it was refreshing—and alarming—to realize how much most of us surrender to doctors and how vague our relationship with our bodies tends to be. Ms. A.’s ownership over her body was absolute, and when she decided to use pennies taped to her belly for pain, her lack of confidence in our science was irrefutable. As her medication chart became a long row of “Patient refused,” and every test we wanted was denied, we had no choice but to discharge her, pleading with her to at least eat more and consider talking to her primary care physician.
She left, declaring to me that she would never come back to a hospital.
As my intern typed out the discharge summary, he said, “So what did we actually do for her?” The list wasn’t impressive, and we had prescribed no medications. It occurred to me how deeply we depend on the patient’s trust and regard and how dependent we are on compliance. Unlike school truancy laws, there is no law saying that you must submit to medical treatment. Our intentions are not actions until a patient enters into a partnership with us. At the end of the day, if we don’t take the time to cross cultural, religious, and psychological barriers, we will never know how many of our patients are leaving the hospital discouraged and alienated, wishing that we were a little more like Oprah.
Learning to Interview
Joe Wright
MY MEDICAL SCHOOL assigns students to interview patients almost as soon as we start, well before we know the slightest thing about the diseases the patients may have. The point is not to make the diagnosis, but to learn how to get the story with an open mind, how to connect with people about things that matter, to listen to the patient.
There were a lot of things I worried about when I contemplated medical school’s challenges, but interviewing patients was one thing I thought would come easily. In my work life before medical school, I’d interviewed strangers ranging from inmates of a youth prison system to emergency-room patients. I asked people about crimes they’d committed, wrongs they regretted, the diseases they feared, and the people they loved. I’d gone up to men on street corners and asked them about the details of their sex lives, and heard all about it right there on the street. Even if I couldn’t keep my G-protein-coupled receptors straight, I liked to believe that I was, at the very least, Mr. Empathy.
And I wasn’t bad at medical interviewing, or at least not right away. I wasn’t good at it either, but that was OK. I was just having a hard time making sense of my patients’ stories. Medical interviewing is a kind of detective work, except that instead of investigating deaths and injuries, you’re trying to prevent them. There’s generally only one person who can really tell you the whole history of a medical problem, and that’s the person with the problem. A doctor has to connect the story a patient tells to the science of how the story came about and make all that into a new story. To say something as simple as “This is why you’ve got that pain,” a doctor needs to know when the pain came, how it felt, and what else was happening at the same time.
But patients told stories that rocketed back and forth in time without warning. They told me symptoms out of order. They might tell me about two things as if they were connected, and then I’d find out they weren’t, or I’d think there was no connection and then there would be. Did the patient’s argument with his wife precipitate the episode of dizziness, or were these just the big events of the day, with no connection to each other except for general noteworthiness? Such questions remained surprisingly difficult to sort out.
Patients would often drop hints of other vast territories of their lives—“Of course, that was back when I was in the war”—that I’d then forget to follow up because I was so busy trying to make sense of the details they’d already told me. But I wanted the whole story, so I started writing more details down. I started learning how to put together the patient’s story in a logical order in my head, even as I heard it in a totally different order. And I started redirecting patients who were wandering too far afield.
“Mr. S——,” I might say if a man started moving from a story of chest pain to a problem at work, “I want to make sure that I ask you a few more questions about that chest pain.”
A couple of months into this training, we videotaped ourselves interviewing the patients. The man on the videotape was me, but he was not Mr. Empathy. I watched myself writing notes furiously, only rarely glancing up at the patient. I looked up to ask short, almost curt questions, then went back to the notebook as the patient answered. I was a note-taking machine.
The worst thing: I loved this patient. Even weeks later, her complicated medical history stayed with me, as did her resilience and passion for life, and the warmth with which she talked about her family and friends. But on the videotape I looked like a sloppy-haired version of the physician I hoped not to become. I exuded a brusque sort of competence, but not kindness. It seemed to me that in only a couple of months I had gone from Mr. Empathy to Dr. Jerk.
Watch
ing myself making notes, I thought of all the private facts of my life that I would never tell a doctor like the one I saw on the screen. If I was going to get the patients’ stories and help them make sense of them and try to help give the stories happy endings, I would have to start looking up from my notebook.
The Difficult Patient
Anh Bui
SHE WAS FIFTEEN, OBESE, and full of attitude. Jessica was also my very first patient on my very first rotation of my very first clinical year of medical school. In many ways, Jessica was a normal teenager: she constantly watched TV; body piercings protruded from her eyebrows and her tongue; and fried foods seemed to be the only items on the menu that attracted her attention. In other ways, she was not so typical: she not only had severe asthma that would force her to repeat the ninth grade, but was also plagued by depression and suicidal thoughts. To top it all off, she was now here in the hospital because of a deep venous thrombosis and pulmonary embolism. All at the age of fifteen.
No one on the medical team liked her. On the charts, the doctors had written, “Hard to deal with,” “She’ll never do what you say,” and “Not an easy one.” Her pulmonologist did not want to schedule her for a follow-up appointment, preferring to pass her off to a colleague. Others nodded sympathetically when you mentioned her name. I will admit she was difficult: She had a pain threshold below ground level and took every opportunity to complain. She would not make eye contact when you asked her questions. She did not follow instructions. Watching doctors and others interact with her, I had a sense that she had no respect for them; then again, they did not seem to have respect for her.
Here was a person who obviously hated the medical establishment but ironically was completely dependent on it. Not only did she have long-term asthma problems, but the most recent evaluation had revealed that she also had the factor V Leiden mutation, causing her to be hypercoagulable, or to form clots throughout the body. Jessica had clots in her leg and lungs. She would now be wedded to Coumadin, a blood-thinning agent, for the rest of her life, along with all of the checkups and maintenance that such a medication involves. And did I mention that Jessica hated needles? She needed Ativan, a tranquilizer, just to calm her down enough for an intravenous line. She would need blood draws at least weekly to properly regulate her medication.
More and more, the hospital is designed to get people out quickly. Give the patient intravenous antibiotics. Take out the appendix. Stabilize the patient and send him home. Hospitals would be ecstatic if all health problems were short-term problems, ones that could be resolved by the time the patient was discharged. What had seemed to be short-term problems—sudden-onset pain in her legs and pain when breathing—were in reality long-term problems. Jessica would need to start that long-term care immediately, and what I had to do now was administer long-term care in a short-term-care setting. Jessica had a laundry list of issues that needed to be dealt with: her illness, her medications, how to take her medications, how to monitor herself on the medications, and what symptoms to watch for if any problems should develop on the anticoagulant therapy. But that was not the end of it. Jessica still had to deal with her asthma by avoiding triggers and consistently using her medications. Her obesity was also a major medical issue for her, and weight loss would be something that she would struggle with every day—perhaps to no avail.
Did Jessica realize all of the issues surrounding her? Would she comply with medical advice, not just in the hospital, but for the rest of her life? Many of her problems came down to behavior modification, and behavior modification could not be accomplished in one week. But that would be about the most time Jessica would spend with us. To be sure, there are hospital services that address some of these issues: social work, physical therapy, and nutrition. But can a one-hour visit daily for seven days actually change behavior?
Unlikely.
Maybe therein lies the problem. My own doubts about the effectiveness of our actions in the long term made me just like everyone else who did not want to deal with Jessica. Without some hope that interventions will work, situations become, by definition, hopeless.
Still, there were definite reasons for hope in this situation.
Sure, Jessica wasn’t the nicest person. She had a foul mouth and even gave her mom the finger, but still, one could argue she was being playful. And although Jessica would never admit that she cared about others, I knew she did. She would redirect her mom toward a more comfortable chair. She would scold her brother after he made a callous remark to their mom. She would be even more sullen than normal if her mother did not come to the hospital that day. Yes, she cared. And I could imagine this year not being very fun for her: She had recently been told that she would need to repeat a grade because she was sick so often. Now she was in the hospital—again—for a week. Nurses came by to wake her up every four hours to take her blood pressure. And it hurt for her to breathe.
As she did not enjoy the instructions we gave her, I tried to impress upon her their importance, one set of instructions and one day at a time. One of her most detested tasks was to keep her leg elevated. “It hurts!” she would moan, inevitably refusing to keep anything elevated. But on day four, as I paid a midnight visit (she is a night owl, like me), there she was—surfing the Internet with her leg propped up high. Of course, she made sure that I noticed. “Do you know how much it hurts to have my leg up like this? It’s been up since you left me this morning, and my knee is aching!” I just had to smile. Given ten hours of elevated-leg time, I let her put it down and then sat next to her to talk, watch TV, and surf the Web.
She was just a normal teenager after all.
Jessica ended up being discharged on the orders of the attending several days sooner than any of us on the team expected her to be. I never got around to talking about many things with her, including her obesity and her depression. Although I was not able to have those conversations with her, I hope someone else does. And I hope she listens. And I hope she is well.
No Solution
Keith Walter Michael
HE HAD BEEN a rather cool and conversational patient until these last few minutes. He answered all the doctor’s questions, brought up some of his own, and even made time to ask a little about the medical student. But near the end of the appointment, he grew visibly nervous.
He spoke cautiously. “You know, Doctor, this isn’t my style, and I don’t want to ask this, but … wha … well … and feel free to say no, but I told her I would ask, so I have to. See, my neighbor is an old lady, about seventy-something, and I help her do things like go to the grocery store, and I take her to Wal-Mart and help with some things around the house. Anyhow, she is really in pain and refuses to go to the doctor. I have offered to take her myself—to the doctor, to the emergency room, everything—but she refuses. She takes Percocet for her pain—I gave her all the ones I had left over and even had to buy her some off the street for five or ten dollars a pill. I told her today I was going to the cancer doctor, and she wanted me to ask you if you would write a prescription for Percocet. I will fill it and give it to her.”
Before the patient finished asking, Dr. D. redirected the question to me. “So what would you do, Keith?”
The patient interrupted and started apologizing to me. “I didn’t want to ask with you here. I was going to ask you to leave, or maybe not ask, but I just felt obligated, since I told her I would try.”
“No, no, no,” I responded, “I’m glad you asked. This is authentic, just how it is in real life. You’re in a difficult position; it’s tough.” In my mind I was wishing he had waited until I was gone. The doctor was pressing for an answer, but I had no idea what to say. Regardless, I had no time to think before answering; Dr. D. wanted a response now.
I spoke slowly, trying to squeeze out more time to find the right answer. “Well,” I started, “there is part of me that wants to say that if you write a prescription with his name on it, you have no control over what he does with it once it’s given to him.” I paused. “However,
in this case we know he won’t be using it, so that isn’t right. Realistically the patient is not being treated with Percocet; it’s only masking her pain. Ideally we need to get her to the doctor. Maybe we could go see her. How far away does she live?”
“No,” Dr. D. interrupted, “we won’t be going to see her. Now do I write the prescription or not?”
“Well, no,” I said, “I wouldn’t write the prescription. One, it’s not legal, and more important, it isn’t the treatment she needs. Until she’s evaluated by a real doctor, she won’t benefit from treating her pain with Percocet. On the other hand, clearly she must really want it if you have to buy it off the street. You’re in a tough position, but still, I would have to say no.”
I felt relieved, but my answer didn’t help the patient at all. He was still in a predicament. Strangely enough, the patient was also relieved. He felt guilty for asking and was happy to hear he didn’t have to be dishonest. Immediately Dr. D. concurred and then explained his reasoning. It was fairly consistent with mine, with one exception.
He explained, “If you had asked me for Percocet for yourself, I would have given it to you. Then you could have done what you wanted with it. But since you asked for it for her, I have to tell you no.”
Later Dr. D. explained to me that you never do anything that will jeopardize your medical license. Never. While that sounded reasonable, I didn’t feel satisfied. We protected the license, but the seventy-year-old lady was no better off, and the patient was probably going to have to buy the drug off the street illegally for her—or he could choose to neglect her. I felt as if we’d punished him for being honest. When I asked Dr. D., he too found it troubling. There was something disconcerting about telling the patient that if he lied about the Percocet use, we would write the prescription, so both he and the woman would benefit. Essentially we were all willing to let the other bear the burden of dishonesty, but none of us was willing to be dishonest. No one could think of an honest solution, so we decided to be content with no solution whatsoever.
The Soul of a Doctor Page 2