Article

Adaptive immunity to suffering Travis Wilkes

The International Journal of Psychiatry in Medicine 2015, Vol. 49(2) 145–150 ß The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0091217415572105 ijp.sagepub.com

I remember my feelings when my hand touched the door handle. I was about to enter the exam room of the infamous patient who had become the nightmare of many of the other residents. The sound of her name was dreaded and nearly considered illicit. I’ll call her Emily. At the time of our first encounter, I was in the first half of my second year of family medicine residency trying feverishly to master outpatient primary care. During my intern year, I became adept with the acute inpatient encounter. I could admit, treat, and discharge a patient in the hospital with ease. Transitioning to the outpatient world was difficult. I was suddenly without the endless resources afforded to the hospital and without the luxury of advising a patient to follow up with their primary care physician. Several months into my second year and having seen patients in the outpatient clinic four half-days a week, I was starting to get comfortable, even confident, with my craft. I had built relationships with patients and helped people through difficult situations, but I hadn’t actually been challenged. And I don’t mean challenged in the academic sense; I’m talking about the lying-in-bed-at-night-wondering-if-I-wasdoing-the-right-thing kind of challenge. Emily was a woman in her mid-30s who had pseudotumor cerebri and cyclical vomiting syndrome. She had been passed around by numerous specialists locally and at big name universities. Each specialist tried novel procedures and medication concoctions without success. When they were out of failed tricks, they sent her on to the next. Paradoxically, the specialty at the end of the line was family medicine. Along the way, her medication list became long and complex. It contained numerous addictive medications including high dose opiates, benzodiazapines, etc. She now frequented the emergency room and was admitted multiple times a week for refractory nausea and vomiting or inability to control pain due to vomiting up her pain medication. When she was on the family medicine residents’ inpatient service, interns were plagued with frequent calls from nurses with every imaginable complaint or request. Many residents believed she was malingering and just wanted to

Medical University of South Carolina/Trident Family Medicine Residency Program, Charleston, SC, USA Corresponding author: Travis Wilkes, 873 Tupelo Bay Drive, Mount Pleasant, Charleston, SC 29464, USA.

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get high on intravenous medications. Others thought she was seeking attention and liked the care she received in the hospital. I had never met her so I tried my best to reserve judgment. I frequently found myself wanting to be an advocate for the deserted patient. When I was on inpatient pediatrics as an intern, I encountered a similar teenage patient who was frequently admitted for refractory pain and scorned by the pediatric residents. I found that beyond the stories of frustration I heard from other residents was a scared, lonely girl. Once that deeply human connection set in, I saw the treatment she received was inadequate and I spent extensive time, often staying beyond my duty hours, trying to help and protect her. While others saw her as an annoying pain, I only saw her pain. Why did I have such a different perspective? I’m not completely sure, but I think it had to do with why I became a physician in the first place: I wanted to engage with the suffering. Everything was very methodical and protocol based for me in medicine until I met that young patient. The interactions I had with her and her family solidified my belief that a person supporting another can change a life. But Emily didn’t know anything about me when she was led into the exam room by the nurse. We always consider that patients are nervous when they come to the doctor—white coat hypertension. We never pry further. She knew that doctors had distaste for her. What must it feel like for a wounded animal to lie down before a hunter and endure painful moments of insecurity and judgment? She knew. And yet she still came and presented herself, asking for whatever help could be provided, begging for something better. When I opened the door, I found a pale, skinny woman with sunken, hopeless eyes. She was on the exam table in the fetal position. Only her eyes tracked me as I entered. She didn’t speak. For a moment I wanted to take the easy road and write her off as everyone else had done. I wanted the words helpless and worthless to assimilate. Then something flickered either inside me or her; a hint of humanity. I saw someone who had lost hope but was not hopeless from my perspective. As I reflect back, I now understand that hope is deeply rooted in the human psyche. Without hope there is no joy, no beauty, and no passion. I asked her what I could do for her. She told me of her miserable stay in the hospital and her miserable existence at home since leaving the hospital. At the end, she requested that I refill her oxycodone, zolpidem, and lorazepam because they were the only things that helped. I could see that she was severely depressed and prodded her about it gently. By the end of the visit, I had prescribed her the medications she requested along with an antidepressant. I also requested that she continue to see me. Nothing was truly accomplished in the initial visit. The status quo was maintained. I doubt that she saw me as being any different from the doctors she had seen in the past. The patient–doctor relationship slowly evolved; it cannot be forced without decompensating into something artificial. And so I became her doctor. Due to the severity of her illness, I saw her frequently. She usually came about once a week. It didn’t take long for me to realize

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that the standard treatments were not going to work. I asked her for her trust and in exchange I would do everything possible to alleviate some of her suffering. She agreed. My first goal was to keep her out of the hospital. The hospital was a humiliating place for her. She sometimes left the hospital hydrated and without pain, but it stripped her of the shreds of humanity she still possessed. To this end, I had a surgeon place a port so I could administer intravenous fluids in the office regardless of how flat her veins had become in the midst of significant dehydration. This proved to be successful. With one win under my belt I had her trust. My next move was to start an outof-the-box approach: mindfulness meditation. After talking to her numerous times at high and low points, I had seen the effects anxiety, stress, and depression had on her physical condition. When she and her husband had an argument, she deteriorated. When she was concerned about her kids, she deteriorated. Depression was slowly eating away at the mind connected to her frail, malnourished body. She was skeptical of my approach but as we agreed she promised to do as I asked. After several weeks of going through breathing exercises and mindfulness worksheets, she told me how much they had helped. She could now go to a room and meditate and prevent a vomiting flare. She couldn’t believe it herself. It was the first time I had seen her smile: the faintest presentation of hope. I could see what she craved most was control. Living in a body that doesn’t respond to the inner voice—or the vast surgical procedures prefaced with promises of improvement—must have been agonizing. While I was happy with her improvement, I also felt empowered. We continued to work at it for months and months. Along the way, she reduced her benzodiazepine use from three a day to 10 a month. We also came to the point where we began talking about stopping her opiate medication. She was scared but I knew she was nearing the point of being capable of accomplishing it. For months I had watched color return to her skin, her weight rise, and the haze lift from her eyes. She also made a comment that changed everything: ‘‘I want to get my teeth fixed.’’ Her teeth had become brown chiseled nubs after being washed by acidic emesis for years. This was the first time I had heard her take an interest in herself and more importantly the future of herself. As a resident, I was challenged to explain encounters to the preceptors who had no knowledge of the situation. How was I supposed to sum up the depth of the situation in a few sentences? How could I even explain the purpose of the visit? In the strictly medical sense, not much had happened. So I downplayed and simplified the situation. In a sense, it was frustrating. I wanted to take credit for my great accomplishment. I wanted to boast. But was it really my victory? She was the brave one and I was experiencing her success vicariously. If she had failed, my day would have gone on, but her life would have continued to spiral down. So much success. So much promise. And then things turned for the worse. Emily’s husband decided that he wanted out of the relationship. He had endured her illness for too long. Suddenly we were back at square one. Anxiety and

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depression consumed her. Her vomiting and chronic debilitating headaches returned with a vengeance. She again required repeated hospital admissions for intractable vomiting and dehydration. I saw that drastic change was needed. While she was hospitalized for intractable vomiting just a week before Christmas, I convinced her that it was time to stop all of her pain medication. I explained it would be the hardest, most painful time in her life but she would be better off in the end. She told me she was scared and she didn’t think she could do it. She said her life was too stressful at that time. She wanted to put it off for just a little while longer. I put my foot down. She acquiesced and said she trusted me. A month later I saw her in clinic after she returned from a one month stay in an inpatient rehabilitation hospital detoxing. I had already spoken with the physician at the facility who had told me how difficult it had been for her. I expected a disheveled and angry person to be waiting for me. I basically expected the same woman I had met over a year ago. But when I opened the door I saw a smiling woman who appeared proud and dare I say happy. I asked her how she felt and she responded that she was great. She couldn’t believe how wonderful she felt. She described a moment late in her recovery where she looked in the mirror and couldn’t recognize herself. She told me how much she had learned about herself, how liberated she felt. Then she said, ‘‘You saved my life.’’ For 14 years she had been in a fog, and now the fog was lifted. Interestingly, she did not feel the head pain was as severe as before. The nausea and vomiting also improved. She didn’t need more medication. She simply needed a dose of self. I realized this is the hardest thing to prescribe. Becoming the doctor a patient needs takes time and energy. The doctor can only be the metaphorical treatment during an acute, intense phase of the relationship. At some point, the patient must learn to be able to find herself as dependable as the physician. A doctor’s time is unfortunately defined by scarcity, and therefore it can only be a temporary support. Albeit the physician as a source of stable reinforcement may continue to be effective as an integral part of the doctor–patient relationship. The problem is that reliance solely on the physician is a precontemplative, concrete state. We must get our patients to consider themselves as vital to fulfilling their highest possible level of satisfaction and fulfillment. They need to be future oriented and in that future they must only see themselves—not envisioning the doctor’s next action. How do you show someone that they simply need to look within to find the treatment they need? I think the answer comes in the form of the doctor–patient relationship. You have to know your patients and they have to know that you understand them. You want the voice in their heads to say ‘‘he knows what’s best for me.’’ If a patient doesn’t feel understood, the doctor–patient relationship crumbles because it feels mechanical. The difficulty is in drawing the balance with the patients who have overwhelming reasons to be miserable. You have to get them to a point where they are not addicted to the physician and completely dependent for all decisions and concerns. With Emily, she liked the safety and assurance that

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came with each visit, but with some coaxing she learned that the source of strength was within her. The great challenge I encountered was in finding the right moments to nudge Emily toward herself and draw myself back. As a physician, it is so easy to get caught up commanding the situation that it can be difficult to simply stop and listen. Upon subsequent visits, I learned that she and her husband now have rejuvenated their marriage. I also learned that she has taken it upon herself to help others in her situation. She resolved to never take another addictive medication and even successfully quit smoking. She learned to be her own drug and never misses a dose. So as I reflect on our encounters and her overall situation, I realize the many things I learnt from her. I learned what it’s like to truly become hopeless and remain that way for 14 years which from the family physician’s standpoint is twice the time spent in medical school and residency. This type of void is something I cannot fully comprehend though I have developed some insight. But as a clinician, you must strive to have empathy without forcing it on yourself but also not actively dismissing an emotional response to patients. When I first met Emily, I initially tried to withhold my kindness but then something broke down that wall; I empathized with her hopelessness and loneliness. She was a character in a bitter story: the suffering target of unpleasant thoughts. Emily saw the hours I sat with her suffering and most importantly recognized that I did not dismiss her. The cold darkness of her void pulled at my soul and I yet I did not turn away. In response to these sensations and emotions, I was compelled to find a way to help. Her suffering went home with me every time I saw her. She intuitively understood that even with the enormity of the burden I continued to sit with her. Through these encounters she learned that if I could endure the chilling hopelessness within her then she could as well. For me it was like watching a sad movie and then being given the task of directing the sequel. Her life depended largely on decisions I made. I think patients understand this more than doctors. Physicians get jaded. Even miracles would get old if they happened every day. But as a physician, you are offered the most intimate view of patients’ lives and asked to cause something, to light the fire. But ignition is not enough. The beauty of the doctor–patient relationship is that doctors are offered the opportunity to maintain the flame and reflect the brightness and warmth as needed. After her significant recovery, I realized she didn’t value that I had given her medication or intravenous fluids or hospitalized her during critical periods. These were simply distractions that were necessary to the process but far from sufficient. What truly mattered was the relationship we had built. My dependability and perseverance created a foundation that helped her realize her own potential. This led me to reconsider the dynamics of the office visit. Earlier in my medical training, I saw the office visit as a concise opportunity to take a history and examination and develop a therapeutic plan quite scientifically using evidence-based medicine. It didn’t occur to me that once the doctor–patient relationship is established, the structure changes drastically. Often, the history is known, the exam is

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cursory, and the plan is simply to spectate. So what happens in the room? The physician’s role becomes a guiding hand which is sometimes gentle and sometimes stern. It doesn’t matter how the physician responds as long as there is a response. The patients know that while in the room with the doctor they have his attention. For a fleeting moment they are at the center of something; they matter. That moment is enough to propel them toward goals and keep the flame burning. As I reflect back on these encounters, I see a parallel between the immune system and the doctor–patient relationship. Imagine Emily would have come in to the first visit with exposure to tetanus having never been vaccinated. I would have followed standard medical practices and administered tetanus immunoglobulin to provide passive immunity. I would then provide the tetanus vaccine to provide long-lasting acquired immunity whereby her body would produce its own antibodies. I see the doctor–patient relationship as working in much the same way. Patients present with issues they have never faced and are unprepared to manage on their own. In addition to any medications or procedures they may need, the physician can provide something akin to passive immunity. Doctors can take on the burden of fear, hopelessness, or uncertainty simply by showing patients that someone else can sit in a room with them and not flee. Meanwhile, the patient can become stronger and more capable of enduring themselves. In the end, medication can sometimes fix a problem, but the doctor–patient relationship is what alleviates suffering.

Adaptive immunity to suffering.

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