Categories
disability Emotion Lifestyle Patient-Centered Care Psychology

Nodding Along

My grandmother was a strong and compassionate Egyptian woman, a mother of three, and a pathologist. On a glass slide, exactly like the ones she used daily, cells from her colon biopsy were identified as undifferentiated, and within days she was diagnosed with Stage IV Colon Cancer.

Although I am learning how to care for people in sickness and health, someday, the chest compressions will be applied to my chest. Disease knows no discrimination, and death unites us all. Thousands of cancer diagnoses and precise and growing knowledge of cancer cell types did nothing to protect my grandmother from that which she knew so much about.

In Egypt, cancer is called ’the bad disease’, and bad it is. Over the next couple months, we watched as the bad disease took our beloved grandmother away from us. During that time, my family members, and my grandmother, had to make a series of challenging decisions that they were very obviously not prepared to make.

Medical advancements, although the main reason we are living longer lives, have caused the complexity and variety of end-of-life decisions to be ever increasing. Uneasy about the series of decisions that my family had to make and handicapped by my ignorance, I found myself reading Being Mortal by Atul Gawande. Atul Gawande led me through a vulnerable and imperfect but inspiring conversation about death and dying, exposing our medical system’s inability to understand health beyond the one-dimensional, and presumptuously noble, endeavor to prolong life at any cost.

While reading Being Mortal, I found myself enthusiastically nodding along, agreeing with the theme of the book: we need to change everything about our simple but destructive approach to aging and our increasing elderly population. Our singular approach to prolonging life simplifies complex social and medical decisions. It seems the attitude now is that longer life is all that matters. Ensuring nutrition and shelter is our only standard for a viable living environment for the elderly. We are failing our parents and grandparents.

Atul Gawande’s presentation of ideas changed how I perceive aging and our healthcare decisions at the end of life. I became a strong advocate of having conversations about the inevitability of our death and the choices we want to be made during our end-of-life care. I was convinced that society and healthcare should ensure that the elderly remain the authors of their own stories for as long as they are willing, and actively empower them to do so. Nutrition, shelter, and minimizing fall risk are minimums of care, not acceptable standards.

The Literature in Medicine Student Interest Group at my school decided to read Atul Gawande’s Being Mortal, and I could not be more excited. In the middle of our meeting discussing the book, as I was passionately sharing my ideas, it occurred to me that although I was full of strong opinions, I had done absolutely nothing to be a part of the solution. My grandfather had come to live with us after his wife of 55 years, my grandmother, passed away from colon cancer, and my only roles/concerns in his care have been to ensure food, sleep, and meds. My strong opinions had not inspired my actions.

Nodding along to Atul Gawande’s criticisms of our medical system is easy, but having an honest conversation with my grandfather about his priorities and end-of-life care preferences as he reaches 90 years of age is not so easy. How might I empower my grandfather to continue to be the author of his story? Believing that healthcare is a right and not a privilege is easy, but carrying out the responsibility that this belief invokes is not so easy. How might I work to help provide all my neighbors with equal access to high-quality care? Practicing the invaluable intervention of presence is not easy, and working day after day to hone my abilities at the art of empathy is not easy. How might I overcome my doubts, fears, and insecurities, and avoid being frozen into lack of compassion?

Too often my strong opinions do not inform my actions. Too often my hate for dysfunctional and unjust systems overshadows my love for the people in the systems. I call myself to love my neighbors more than hate the systems, for love is actionable and hate is stifling and tiresome. Let love fuel the tank, for compassion-based activism is the only kind that goes the distance.

Photo Credit: Dan Strange

Categories
Emotion Empathy General Humanistic Psychology Narrative Public Health

Guter Mann

This city is so peaceful. As the bikes whiz by, I notice the absence of the cacophony and polluting fumes of traffic. I’m walking down the sidewalk in brown leather shoes and a tucked-in dress shirt while eating bougie gelato. I love gelato. I look up and notice the blue sky. It’s a deep blue and the clouds have distinct borders. I’m in Salzburg, Austria for a conference and I’m loving this city. Just as I marvel at the clean streets and begrudge the abundance of luxury vehicles, I turn the corner and see my sister on the floor asking for money. I immediately cross the street and reach in my pocket to hand her the change I received at the gelato stand. My sister is donning the flag of Islam on her head and I greet her with the anthem of Islam, a greeting of peace. She smiles and says, “Allah yijzeek al-khayr” – God reward you with the good. As I walk away, I smile at the beauty and seamlessness of our interaction.

I continue walking back to the conference hall. I review my rehearsed words as I finish my gelato. My presentation is on the data I generated regarding the controversial use of bisphosphonate anti-resorptives in the setting of chronic kidney disease mineral bone disorder. The nephrologists in the crowd won’t be too thrilled. In my head, I am considering all the different questions I could be asked, when I see another of my friends on the corner of an intersection. As I approach him, he brings his hands together and bows his head. When he raises his head again, I smile at him. I don’t have any more change so I reach into my pocket and hand him 5 euros. He has a cup in front of him, but I decide to hand him the money. I think this might make the money more of a gift than a charity. I can see hurt in his eyes as he tries to find a way to thank me. Reaching out I put my hand on his shoulder and squeeze, pointing up with my other hand, trying to tell him that I will pray for him. While my hand is on his shoulder, he turns his neck and kisses my hand. I say, “No, no!” and withdraw my hand. I feel ashamed. I know I should be the one kissing his hand for accepting my miserly gift of 5 euros while knowing full-well that I have another 10 laying comfortably in my pocket. Ten euros that I will, over the next couple hours, undoubtedly spend on a sacherwurfel from the bakery next to my fancy hotel and then on another helping of overpriced gelato.

Lost in my thoughts of embarrassment, I begin to walk away, and as I do, he yells in German, “Guter mann!” – good man. Halfway across the street, I think to myself, I may not be a good man, but I have the opportunity to try, and so I turn back around.

Ten euros was all the money that I had left on me. But 10 euros was all it cost to earn the respect and love of a man I had only met minutes ago. Excitedly, the man begins to talk to me in German. His name is Damien. (We spend a good 5 minutes on my name. I would say, ‘Mo-ham-mad’, and he would then repeat after me, ‘No-han-nam’). Damien is a father of 3 kids. He was doing well for his family until his wife lost her vision. He said, “Now my heart is still good, but children’s stomachs are empty, so my hand is outstretched.”

I notice the tears in my eyes. I had never heard German spoken before, and I shouldn’t know what he’s saying to me, but I understood every word. Home is where the heart is, and this man is my neighbor. As I leave Damien for the second time, I point up again and then turn my palms up to the Heavens in prayer. He says, “Allah.” And I repeat, “Allah.”

On my second day in Salzburg, I take the long way to the conference center, hoping to run into my friend Damien. I turn the corner and there he is, sitting at the end of the block. My stride lengthens and my steps quicken. As I approach him, I see him leaning left and right, squinting his eyes; he’s trying to see if it’s me. He leaves his corner and yells, “Nohannam!!” while jogging towards me and we embrace each other as brothers and lifelong friends. And as my neighbor and friend embraces me, I realize I may not be a good man, but Damien is willing to show me how to become one.

Photo Credit: Sam Rodgers

Categories
Empathy

Properly Unprepared

It was late afternoon, and the current nursing shift would be relieved in less than ninety minutes. The feeling of impending Friday freedom was palpable on the floor of the intensive care unit. I was on my way to meet with my last patient of the week, who had been brought in for an unintentional drug overdose. My goal was to determine whether the overdose was truly accidental, and if she was a candidate for compulsory psychiatric hospitalization. I passed by a large bank of computers without stopping, and knocked on the patient’s door. When I walked in that room, all I knew was the patient’s name, her age, and the reason for her hospitalization. Other than those preliminary facts, she was a complete mystery to me. I spent fifty minutes with the patient, and had a relatively pleasant conversation. When I walked out of her room, I opened her medical chart for the first time.

Unfortunately, that day, the story that I received from the patient and the information that I got from her chart told two different stories. Numerous providers had noted that she was irresponsible with medications, and I got the sense from the chart that she only sought medical care to gain access to controlled substances. Now that I had established a good relationship with my patient, I would have to re-interview her in an attempt to reconcile the information I had seen in her chart with the picture she had painted for me in the moments prior. My Friday freedom would just have to wait.

I would not be surprised to find out that the ICU staff was laughing at me that day. After all, I ended up spending more than two hours with this patient when I could have conducted only one brief interview. Even though the majority of my first hour with the patient was pure confabulation, I viewed it as a valuable component of my assessment. That first hour represented my sole opportunity to get to know my patient without any bias. Had I looked at her chart before walking into the room, I unquestionably would have written her off as an irresponsible, drug-seeking troublemaker. I would have asked her pointed, perhaps accusatory questions about her behaviors, and worse, I would have known exactly when she was lying to me, further eroding any respect I may have had for this patient.

Electronic medical record systems help to facilitate the sequestration of large amounts of information about our patients with minimal effort, and it’s largely considered taboo to meet with patients without first researching their medical record.  The information physicians can learn from the medical record can be undoubtedly beneficial in many situations, but extensive chart reviews can also lure us into a false sense of security, allowing us to preconceive an identity for our patients before ever having met them.

Had I read my patient’s chart that afternoon, I am certain that I would have made judgments about her that would have influenced my interview. Instead, I learned about my patient by allowing her to tell her own story. I thought about the information she shared with me, and, perhaps more importantly, what she failed to tell me. Because the patient never discussed her well-documented mishandling and possible dependence on prescription medications, I felt confident in making an assessment that this patient had relatively poor insight about her problems.

Featured image:
hGraph: patient + clinician looking together by Juhan Sonin

Categories
Emotion General

A Caution Against the Extinction of Emotion

“Well, you know, I was recently diagnosed with cancer,” my friend said lightly in the middle of a spirited conversation about the merits of eating organic vegetables. She smiled as though she had just mentioned a factoid about organic kale, and not told me something earth-shattering. She continued eating her lunch while I sat there slack-jawed, trying to arrange myself. So consumed was I with the news of the diagnosis, I cannot recall a single other thing that we discussed during that lunch.

Throughout medical school, our professors have often told us to “get comfortable with being uncomfortable.” Diligent student that I am, I believed I had mastered discomfort. I believed that no matter how difficult the patient or awkward the situation, I could muster up some empathy and manage to make that prized human-to-human connection that separates the clinicians from the caretakers.

It’s an illusion to believe that we are comfortable with discomfort if we only ever experience discomfort as physicians. In this unique profession of ours, we are prepared to meet strife and pain on a regular basis. Whether we are delivering bad news or seeing a struggling patient, discomfort is no stranger to us. It is essential, however, that we recognize the power imbalance inherent in these situations. As physicians, we are the ones delivering the bad news or offering advice to our patients. As such, we must come from the position of strength. I have also detected the unspoken expectation that no matter what awaits us when go through the door to see a patient, we must remain unchanged when we come back out the other side. While we empathize with our patients and do our best to help them, ultimately, once we step out of the examining room, that bad test result or unfortunate lifestyle choice is the patient’s emotional burden to carry forward, not ours. In other words, our professional responsibilities call upon us to maintain that misfortune as ‘other.’

Even as a student, I’m already seeing how challenging it can be to disentangle my professional identity from my personal life. In my professional life, I have cultivated a sort of empathetic stoicism that allows me to connect with patients ‘in the moment,’ and then quickly wash my emotions off and redirect my focus toward whatever task comes next. It’s a survival tactic that I suspect many of us have deployed. In our personal (non-professional) relationships, however, our identities as children, siblings, lovers, and friends must come before our identities as doctors. Unfortunately, the more time we spend practicing in our professional roles, the more difficult it seems to transition from professional to personal. In personal relationships, we cannot always anticipate when we’re going to receive news, either good or bad, but when we do, we cannot expect to go through the door and come back out unchanged.

In our professional lives, we’re expected to be compassionate but composed. We’re taught to deliver bad news, perform motivational interviewing, and deal with difficult patients, but I wonder where the line is between beneficial sensitivity training and detrimental emotional taming. Before we walk into an exam room, we read through the patient’s chart so we know what to expect, and this allows us to create a sort of comfortable discomfort to protect ourselves. I would argue that this emotional fortitude is not beneficial to all aspects of our lives. Emotions are sloppy—something  that doctors cannot afford to be—but I worry that if we don’t let our feelings bleed through the lines, emotional composure could pave the way for an extinction of feeling. After having lunch with my friend, I had felt frustrated with myself for being so stunned and scared by her news. I didn’t have the emotional composure that I would have with a patient, but that’s the key difference—loved ones are not patients. It’s a testament to our most intimate relationships to express our genuine feelings however uncomfortable they may be. Perhaps, as physicians, we need to work even harder to stay in touch with these feelings so that we never lose our ability to access them.

Featured image:
Feeling. by Javi Sánchez de la viña

Categories
Literature

Ishmael’s narrative: an emotional response

“Call me Ishmael” is the first line in Moby Dick and probably the most famous opening line in all of American Renaissance era literature. Taken in a different context: “Call me Ishmael,” or perhaps: “My name is Ishmael,” could also be a first exchange between a doctor and patient. Coincidentally, our Ishmael in Moby Dick tells readers something that resembles what a patient might say to a doctor following initial greetings:

moby dick
Photo courtesy of Tony Sun

[So doc,] Some years ago—never mind how long precisely—having little or no money in my purse, and nothing particular to interest me on shore, I thought I would sail about a little and see the watery part of the world. It is a way I have of driving off the spleen, and regulating the circulation…whenever my hypos get   such an upper hand of me, that it requires a strong moral principle to prevent me from deliberately stepping into the street, and methodically knocking people’s hats off—then, I account it high time to get to sea as soon as I can.

So, translation? That is to say, can a physician translate Ishmael’s opening account into a chief complaint and past medical history? Here is my attempt: Ishmael is a middle-aged male (his age is not given) who complains about feelings of boredom and tiredness. He also describes a history of behavioral symptoms that suggest underlying feelings of anger. Ishmael mentions he looks for ways of “driving off the spleen”—the most fitting definition of “spleen” given by the Oxford English Dictionary is: “irritable or peevish temper.” Imagine now, if a patient used that exact phrase, “driving off the spleen,” to describe his anger and how he tries to rid it. As a student, I encountered patients during my preceptorships that mentioned similar behavioral symptoms including becoming “more irritable” and “losing their temper.” I found it challenging but helpful to imagine such feelings and consider them in the context of the patient’s chief complaint and past medical history. This allowed me to move with the patient’s sorry and avoid awkward moments and responses. As an exaggerated example, responding with a huge smile to a patient saying they’re “irritable” is not an ideal reaction and creates a difficult situation. Many times, these problems may not even be apparent until later reflection. To give students more chances to reflect, some medical schools such as Weill Cornell Medical College offer students recorded sessions of them interviewing mock patients. As a student, taking complete patient histories is not an easy task, and we can use all the practice we can get.

To wrap the above discussion into the ongoing theme of my posts—how reading imaginative literature is useful to doctors and scientists—I would suggest that my classmates, and also upper years and residents, make time to read poems and imaginative fiction that elicit a wide range of emotions. To this end, I can give the example that reading Othello and King Lear elicits very different emotional responses than reading, say, A Midsummer Night’s Dream and As You Like It. Yes, readers should read deeply into the variety of emotions in these plays, but they must remember to feel those emotions within the characters of Othello and Lear, or in our case, Ishmael and Ahab. This reading followed by feeling is a practice that physicians can use while taking a patient history: read and hear the patients’ situation, and then feel with the patient. Importantly, students and doctors can practice this even outside the clinic, while reading a poem, play, or novel.

Coming back to Melville’s novel, Ishmael announces his decision to go on a whaling journey at the end of Chapter 1: “By reason of these things, then, the whaling voyage was welcome; the great flood-gates of the wonder-world swung open.” Ishmael’s decision to “get to sea” then brings readers into Ahab’s infamously mad pursuit of the white whale.

My future posts will follow Ishmael’s narrative and bring to light elements that relate to medicine and science.

 

Featuring image:
Sea and sky by Theophilos Papadopoulos