The Dying Man
Written by Janie Cao
Edited by Mary Abramczuk
A few years ago, I spent half my day with a dying man. I remember these things about him: his name, his past profession, and that he was dying alone.
I never saw his résumé, the size of his house, or how much money was left in his bank account. I was not curious to know, either. But I bet they seemed significant once upon a time, at a dinner party, maybe. He worked as an engineer.
On that day—the day he died—no one who had cared about those things was there.
I was a stranger, yet I saw his last breaths. It was a curious day.
This world teaches us to do many things. To set goals (S.M.A.R.T ones, in fact) and to meet them. To maximize profit and minimize loss, and to use other people, to our advantage. We learn to build storage houses and efficiently fill them with glorified trash; to talk like we matter, and live like it, too.
Someday, we will all be that dying man. Not fully here, and not quite there; mere wisps of breath. When that day comes, will this world be at your bedside?
Sometimes, I wonder.
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Dedicated to a friend: May you find what you are searching for.
Photo credit: Jörg Lange
We didn’t have a blog post scheduled for this week, so here’s a book review instead 🙂 I read this book last week for my Adolescent Sexual Health MPH course and enjoyed it.There’s a lot of interesting tidbits on sexual health issues. I mention two.
Even if you don’t agree with everything the author says, I think memoirs can be helpful in showing you unique life perspectives based on true experiences that you may never have experienced yourself. Furthermore, reading memoirs can get you acquainted with potential resources to help others. Ever heard of bibliotherapy, anyone? 🙂
“My mother says I’m a piece of shit.” My 18-year old patient sits at the head of a conference table, her face stony with resolve. The members of her care team are surrounding her. She asks, “Why do you all care about me when I don’t even care about myself? That’s just weird.” Her resolve crumbles and tears begin rolling down her cheeks.
The attending physician stares at her before responding. “We don’t know you,” she says. “But we do care about you. You’re right-it’s a weird concept.”
It took this exchange-during my final year of medical school-for me to fully grasp the unusual nature of the empathy that we have for our patients. As medical students, most of us have described ourselves as empathetic or compassionate at some point. But I’ll wager that most of what we know about empathy comes from close relationships, be they with friends, family members, or even repeat clinic patients. It’s not difficult to understand how these established relationships could be colored with empathy. After all, these are relationships that we usually choose to have, or at least, choose to continue having, and in many cases, they’re relationships of mutual benefit.
As medical students, much of our experience is gained on the inpatient units in the hospital, with patients who are thrust into our service. While it is possible that the relationships we have with those who are closest to us serve as templates for empathy, the relationships that we develop with our hospitalized patients are different in several ways. First, we do not choose these relationships. Generally, patients are assigned to us regardless of our desire to have them as patients. Part of being a physician in training implies consent to treat patients. Another reason why our relationships with patients are unique is that we rarely can choose to terminate a relationship with a patient who we are treating. Finally, the relationship between the hospitalized patient and the doctor is not mutual. Hospitalized patients cannot and should not offer any direct benefits to their treatment team. My relationship to this 18-year old patient fit all the aforementioned parameters: I did not choose her as my patient, I could not stop my service to her, and I enjoyed no direct benefit from her as my patient. And yet, even accepting the above as true, even recognizing that I had only known this person for 48 hours at the time of this discussion, my empathy for her was not any less genuine than my empathy for my best friend or closest family member.
Does being a physician mean that we are forced to have empathy for near-complete strangers? Or does it mean that the people who choose this profession are characterized by an ability to freely give empathy to those who cross our path?
Interestingly, the word “empathy” did not reach the English language until 1909. Derived from the German word “einfuhlung” (or “feeling into”), it has been a continually enigmatic concept that has eluded any simplistic definition. Philosophers have described empathy as a central emotive descriptor that characterizes the feeling one has when they recognize the human spirit in another.[1] Even neuroscientists have taken up the job of trying to define empathy, noting that mirror neurons, which are neurons that fire when one living creature acts and then observes the same action in another living creature, may play a role in the development of empathy.[2]
Reflecting on my patient’s remarks has given me serious cause to contemplate what empathy means to me as a soon-to-be physician. While I can speak only for myself, I think the thing that makes me different is not my capacity to give empathy, but my desire to foster relationships with my patients. Even though my relationship with that patient may have been only days old, the quality of that relationship and therefore my ability to feel empathetic towards her, is a direct reflection of my desire to have that relationship. While I did not choose the patient, I chose to get up that day and practice medicine, and empathetic medicine is the only kind of medicine I know how to practice.
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.
A mother separated from her missing husband flees a war-torn country, her homeland, to provide a brighter future for her children. She’s a dentist by training and practiced dentistry back home; but here, here she’s cleaning homes for a living. Why? When she left her home with her four children by her side, headed to a safer place, to America, what was in her suitcase? Alongside the picture of her missing husband and the few possessions that remained after the destruction of her home, in her suitcase, she has hopes and dreams, fears and doubts. She looks to her children for strength, but she’s terrified every time she looks them in their eyes. She is not optimistic, but she is hopeful; she looks the odds straight in the face and proceeds anyway. Because hope is not logical, it is powerful.
She’s cleaning the home of a happy family; the father is an engineer and the mother is a doctor and the children play piano. Their life, their hopes, goals and dreams are dependent on the stability of their country, but they cannot see it. The same hands that used to place crowns to relieve the pain of the suffering are now scrubbing the floor of another woman’s bathroom. But hope is powerful, and she lives through the dreams of her children. Two of her daughters want to be doctors. Her third daughter wants to be an artist. Her son is eight and he loves math. In her suitcase, she brought with her the dream of a better education for her children. “In Syria, we ate grass. In Egypt, we didn’t have food. In Indiana, I love school.” These are the words of her eight-year-old son.
A man runs to catch the bus. He can’t miss the interview; he really needs this job. It is his third interview in as many days. His last job got him enough money to get his family off the streets for a couple weeks. But motels are more expensive than he ever imagined. He’s homeless. His family is homeless. This wasn’t a possibility he considered when he graduated with his MBA. He had a great job, but the hurricane took everything away. And he hasn’t been able to get back on his feet. He catches the bus and pays the $1.75 in quarters. He checks the email that he printed; the interview is in room 4015. He runs up the stairs; he really hates being late. As he enters his interviewer’s room, a bead of sweat runs down his forehead. What’s in that bead of sweat? Desperation and nervousness, humiliation and self-pity, purpose and resilience.
His interviewer gives him the job offer. He smiles and shakes his head. A tear runs down his face. He can’t take the job; he can’t manage the branch that makes most of its revenue through alcohol sales. Another day and another interview, but his family remains homeless. He needs the job, but rejecting the offer was an easy decision. He believes that although alcohol may have small benefits to people and society, the harm it causes is much larger than its benefits, and wants to play no part in its distribution; he will not be a co-creator in the intoxication of his neighbor’s mind.
A young woman sinks into herself on the examination table. Her husband is holding, squeezing her hand. The doctor is still talking. He looks very sympathetic. The young woman just learned that she has a cancer growing inside of her lungs, an aggressive cancer. The doctor thinks ‘we can fight it.’ The young woman’s mind is overwhelmed into quietness. All she can think about is her daughter’s play after school that she doesn’t want to miss, even for this. The doctor brings her back, ‘Do you feel comfortable about our next step? I think that’s the best place for us to start.’ The young woman shrugs. What is in that shrug? Fear and uncertainty, peace and tranquility, ambivalence, a need for normalcy, a desire for time to make meaning.
The young woman is herself a physician, trained and licensed as a radiologist. She knows enough about cancer and the late stage non-small cell lung cancer she has been diagnosed with to know that the longevity of her future has been called into question. And yet this is not the topic of discussion with the doctor. Instead, he discusses treatment options, which is fancy talk for a long list of big words in different orders and combinations. When asked about the next step, she shrugged. She shrugged because there didn’t seem to be room for her in that room. (Insert young woman with terminal cancer here). Although it is more comfortable for the doctor to rattle off treatment options, the patient wants to take time to acknowledge the inexorability of our life cycle. To the doctor, it was the end of a beginning, and they were, together, supposed to begin a new chapter of strength and resilience. While he rattled off treatment options, she just wanted to catch her daughter’s play after school, and she was running late.
In the words of HL Menken, ‘For every human problem, there is a solution that is simple, neat, and wrong.’ Without taking a moment to explore what’s inside the immigrant’s suitcase, the homeless man’s bead of sweat, the sick young woman’s shrug, we stand a sorry chance to witness, help, and learn from ordinary people with the will to do extraordinary things. This is the power of narratives; the power of listening. I call myself to look inside the suitcase, to investigate the bead of sweat, and to ask about the shrug; I call myself to listen.
I find myself in an imperfect world, full of injustice and oppression. I find myself an imperfect man perfectly given the ability to alleviate suffering, on a personal level with a smile or a hug, and on a larger scale by fighting injustice and refusing to stand idly in the face of oppression. Poverty belongs in a history museum. And hunger…we have enough food in the world for every member of the human family to eat a balanced 3000 calorie meal. When we eliminate poverty and hunger, there will be many other injustices for us to face. I want to make facing these injustices my mission. My mission is to be ‘human’ as best I can; to work to establish justice in any capacity that I can, from a generously given smile to an honest political campaign.
I walked up to my dad and said, “Baba, there’s something wrong with me”. I was probably around 8 years old at the time. He looked concerned and prompted me to tell him more. I said, “I cry a lot. About everything. And my brother and friends make fun of me.” He then smiled and, through his smile, said words that will stay with me forever. “Don’t worry Mohammad. It’s a sign of a soft and warm heart. Your special mission is to travel through this life and keep your same soft heart.”
Fast forward 10 years to my second year of medical training. I remember entering a patient’s room as a part of our Introduction to Clinical Medicine course. Moon face. Truncal obesity. Buffalo hump. Abdominal striae. Hirtuism. I was like a child with a fulfilled Eid gift wish list! Here I was, celebrating my ability to recognize the quite obvious presentation of Cushing’s syndrome, oblivious to the very real and detrimental complications of Cushing’s syndrome and the emotional toll that these symptoms must be having on this young woman. She entered the room to receive care, and I entered the same room so focused on my ability to produce a differential diagnosis that I failed her and myself; I failed to show her the compassion that fuels my love for medicine. My inability to see past the mere facts of her presentation left me in a poor position to honor my mission. Fueled by the tears of a child, I cried.
Valentine’s Day is not typically kind to medical students. While many couples share flowers and romantic dinners, my fiancé and I looked forward to escaping the hospital just long enough to exchange sweet-nothings over take-out sandwiches. Though lacking in outward displays of affection, this Valentine’s Day was imbued with something different. A few weeks ago, a patient taught me that love, it turns out, can exalt us and confound us, but it can also, literally, break our hearts.
He was a thin man in his late seventies, a mop of unruly gray hair on his head. He came into the emergency room one evening, unable to catch his breath and complaining of severe chest pain. An EKG was rapidly obtained and showed concerning peaks and valleys of electrical activity. Troponin levels were rapidly increasing in his blood. TC, it appeared, was having a heart attack.
Image courtesy of Med Chaos
Though still in the early stages of my medical training, I knew what would come next. In rapid succession, TC would be rushed to the cardiac catheterization lab, and a stent would be placed in his coronary arteries, restoring desperately needed blood flow to his heart. He would recover. His loving wife and adult children would visit him in the hospital. In a few days he would return home.
I was wrong. Try as they might, TC’s doctors were unable to find any blocked arteries in his heart. With nothing to stent open, TC was admitted to the medicine ward for careful observation. Miraculously, his condition stabilized.
The next morning he was feeling better. Not wanting to forego his calisthenics, I found him walking along the bustling hospital corridor, pausing briefly outside each room to greet his fellow patients. As I corralled him back to his room for morning rounds, I couldn’t help but notice the gold wedding ring hanging from a length of frayed twine around his neck. He caught my gaze and smiled, “pretty, isn’t it?”
Lowering himself carefully to his bed, he explained why he no longer wore the ring on his finger. His wife, he lingered on the word, had died almost three months ago. His children, long since grown, had come home for a while, but were now back to their own lives. He’d considered moving into a smaller place—less lonely he figured—but he couldn’t bear the thought of discarding any of her things.
Later that day, TC went for an echocardiogram which immediately revealed his diagnosis.
He had Takotsubo cardiomyopathy, also known as “broken heart syndrome.” It is a rare condition, but strikes most commonly after a period of great emotional turmoil. Marked by chest pain and shortness of breath, the initial presentation is not at all dissimilar to a heart attack, so committed in its mimicry that the EKG and blood findings are often identical.
Although the pathogenesis of Takotsubo cardiomyopathy is not completely understood, it is postulated that adrenaline, released in times of great emotional distress, may overwhelm and eventually damage the heart. With enough damage, the heart breaks, contorting itself into a characteristic shape—wide at the bottom with a distinctively narrow neck. The shape resembles a Japanese takotsubo pot, a vessel historically used to trap octopus.
As a trainee in the field of medicine, my classroom preparation taught me to be objective—to plumb the pertinent facts of a patient’s history and physical exam in order to provide effective treatment. But it is patients like TC who teach me that good doctoring requires something more. Though less tangible, it is clear that one’s physical and emotional well-being are inextricably linked.
Several days later, heart ostensibly healed, TC was ready to return home. He stepped into the elevator, turned, and waved goodbye. A gold ring shone brightly on his finger.
I wanted to discuss an experience I had in the newborn nursery. I was assigned to Baby K—a small baby girl who was delivered by emergent cesarean section because her mother abused cocaine during her pregnancy. Looking through Baby K’s chart, an unsettling feeling came over me. This was one of the first times I directly saw how a mother’s behavior impacted her child. Before this, all my clerkships had dealt with adults who were responsible for their own health. Seeing an innocent newborn enter this world with a disadvantage because of her mother’s actions was disheartening.
With this in mind, I went to talk to Mother K the next morning. The chart stated Baby K was going to be given to her great-grandmother, and I needed to confirm this information. I could immediately tell that Mother K was upset when I asked her to confirm. She said, “Yes, she’s going to her great-grandma, but I’m still going be involved! I’m NOT giving up on her!” I realized that just asking the question caused her emotional pain. Especially since the social worker, the nurse, and probably several others, had also asked this question. She again assured me that she loved Baby K, but that she just needed to get her life together before she could care of her. After talking more to Mother K, I realized she was trying her best.
This experience opened my eyes to my perception of patients. After browsing Mother K’s chart and reading that she continued to abuse cocaine while pregnant and was planning on giving Baby K to another caretaker, I may have made the assumption that she didn’t want anything to do with Baby K at all. This assumption may have been reflected in the way I asked her questions, leading her to become distraught. Many patients, especially those who suffer from substance abuse, have lost complete control over their actions. Their mind is controlled by an addiction, and they need help before they can take care of others. After talking more with her, I learned that Mother K actually planned to enroll herself in a treatment center that has housing. After getting better, she yearned to resume care of Baby K. These are details that were never mentioned in any notes, but if they had been mentioned, may have altered my first impression of Mother K before I met her. I also learned that Mother K continued to use cocaine during her pregnancy because she didn’t realize its impact on Baby K. She used cocaine during her prior pregnancy with her older son, and he remained “normal and healthy.” Even though we, as medical professionals, can understand how abusing cocaine during pregnancy is directly detrimental to the fetus, many individuals may not understand this basic concept of maternal-fetal physiology. We thought Mother K’s use of cocaine was due to her lack of care for Baby K, when in reality it was fueled by her lack of knowledge.
The most important lesson I learned was not to judge patients based on chart review alone. I know this seems like “common sense,” but it can be easy to jump to certain perceptions after reading the tone of some of the notes in a patient’s chart. My goal in the future is to enter every patient’s room with a blank slate. Our duty has always been to provide the same quality of care for all patients, regardless of their actions or beliefs, but sometimes we let our feelings get in the way of this duty. I have struggled with this in pediatrics more than I have in any other specialty. When I talk to parents who are willing to move mountains for the health of their children, I feel endearment towards them. There is nothing stronger or more special than a parent’s love. In contrast, with parents like Mother K, it is easy to become frustrated. After examining Baby K, I kept thinking about her fragile little arms and small shrunken head. Baby K may grow up to have health consequences that could have easily been prevented. All I can do is allow this experience to shape future patient encounters. I’m going to try to place myself in each parent’s situation and ask myself: what information or advice would I find the most helpful right now? At the end of my time with Mother K, I gave her a tight hug—I’m rooting for her. I hope she is able to complete her treatment and be reunited with Baby K soon.
One of my favorite aspects of medicine is the relationship between health and lifestyle. I think of lifestyle as all of the “stuff” that affects patients outside of the exam room, including diet, exercise, family relationships, and living accommodations. All of these things affect the physical body in ways that are not always immediately apparent. In my most recent rotation, my preceptor and I treated several obese women complaining of low back and hip pain. Thinking about the relationship about weight and musculoskeletal pain, I was surprised that my preceptor never made suggestions to patients about increasing their activity level or improving their diets. “I’ve realized that I’m not a cheerleader,” he told me, when I questioned him. “Trying to make people change only ends in heartache for me.”
It’s difficult to think about how patients can change their lifestyles without first thinking about their motivation for change. January happens to be the perfect time talk about motivation since this is the time of the year when people are making those pesky New Year’s resolutions. W.D. Falk, a philosopher, writes about motivation as a direct product of one’s morals, and divides motivation into two subtypes: motivational internalism and motivational externalism. Motivational internalists believe that one’s motivation for doing something is directly linked to how the activity in question relates to one’s morals. In other words, if a patient is convinced that exercise is a good, morally correct thing to do, that moral conviction will be enough to motivate them to exercise. On the contrary, motivational externalists see no link between one’s moral convictions and their motivation. No matter how important or morally correct our patients think something is, their motivation for changing their lives has to come from some external source. A patient may believe that exercise is a morally good activity, but this belief alone is not enough to actually motivate them to exercise.
Acknowledging the existence of these two groups (and of course, many shades of grey in between!) will allow us to understand how we may best help our patients without using a “one size fits all” methodology. Some patients may able to find the impetus for change within themselves. These patients may articulate specific plans to achieve a goal or they may have independently improved their own wellbeing in the past. Other patients may need external motivating factors to make changes necessary to improve their health, most often in the form of a trusted confidant. We need to use our best clinical judgment to decide which approach would work better for each patient.
My preceptor’s comments also helped me recognize that in addition to understanding our patients’ capacities for change, we also need to think of our own capacities for motivating our patients. Some physicians are cheerleaders willing to stand on the front lines with their patients. These practitioners feel energized by helping people make positive changes and are willing to make an emotional investment in their patients’ lives. They help their patients set goals, consistently communicate with patients about their progress, and are willing to act as an emotional support whether or not the goals get met. Other physicians may not see themselves as cheerleaders for change. These physicians still have a responsibility to discuss aspects of their patients’ lifestyles that need improvement; however, their role might take form as a “fan” in the stands, rather than a cheerleader on the sidelines. They can still cheer on their patients and check in with them about their lifestyle changes, but may need to help patients find someone else in their healthcare team who is willing to do the ground work that it takes to help patients set and reach goals. In fact, I believe that it is far better to honestly acknowledge that you are a lousy cheerleader than to try to help your patient, only to become disheartened by their lack of progress and abandon them out of sheer frustration before their goal is met. It’s only through an honest acknowledgement of our own abilities and limitations that we can help our patients change their lifestyles for the better.
As the MSPress Executive Board transitions, we bring you a post from past! Enjoy the work of one of our emeritus writers, Sara Rendell.
I am a medical student because I love questions. After a blood vessel takes a punch, what causes the platelet pile-up? What makes people blink, gag, cough, or sneeze? Why is cat litter as scary as alcohol for a pregnant woman?
Some medical questions are unanswered. Yet, science promises progress. With enough grant-funded work in labs and clinics, scientists can describe new diseases. Medicine will show where illness happens, researchers will explain how it happens, and epidemiologists will predict who it is more likely to happen to and when it could happen to them. Even with all of this knowledge, there is one question I do not expect my medical training to answer.
While I go to lectures, practice interview skills, and learn how to diagnose and prescribe, people endure pain, distress, and loss, and I can’t explain why. Why do people suffer?
I can look to people who suffer for answers. It is not hard to find written first-person narratives of suffering. In these narratives, protagonists are often cast in two roles: the suffering fighter and the wise sufferer.
As Kathlyn Conway discusses in her essay, “The Cultural Story of Triumph”, the narrative of a “suffering” fighter dominates over other stories of illness. Illness becomes a journey to physical cure. Where physical cure is not possible, illness is cast as a path to wisdom, a form of moral development. The patient becomes a traveler who should somehow be “uncomplaining, strong, and brave” on this journey (Conway, 2007).
“Illness is a chance to show us your guns and triumph!” the medical culture seems to say.
If society expects sick people to be “fighters” what else do we expect from them? I think of S, a 62-year old woman with osteosarcoma, who put on lipstick while her skin was sinking deeper into the spaces between her bones. “Can’t let this cancer make me ugly honey,” she said as she applied her makeup in the mirror. What does it mean that S’s fight against cancer involved cosmetic routines?
The idea that people grow in strength or wisdom while suffering is familiar to me. As essayist, Pico Iyer describes in “The Value of Suffering”, suffering can be a doorway to compassion, loss can be an invitation to appreciate nuance. Yet, my intestines tangle when I imagine telling a patient who suffers, “What an opportunity to unfurl in wisdom!” Even if I did not say this out loud, I wonder what my expectations might communicate.
Last year, my close friend J died of metastatic breast cancer while 27 weeks pregnant with a boy. During her first trimester, we would lie on my floor and look up at the ceiling when retching woke her in the morning. Over the next few months we went to her prenatal visits and giggled over possible baby names. Then, she stopped eating and her nails turned yellow. Her doctor said, “Hopefully it’s hepatitis.” He didn’t bother to tell us what it hopefully wasn’t. Her yellow vomit and “liver nodules” explained. She was 24 years old when she passed away and left behind her husband and 3-year old son.
That was an inexplicable catastrophe. But J’s husband needed to believe that somehow God had planned this. If he believed that her death was one example of many forces that roll over us the way tires would ants trying to cross a highway, then how could he continue with day-to-day life? How would he keep being his son’s Papa?
Even after I gather years of experience with suffering, I do not expect to be able to explain it. I do know that the stories we tell about suffering can influence how we relate to patients.
My expectations form the questions I ask and the things I attend to. Imagine me telling a patient, “Fight your cancer, but stay pretty. Also, grow spiritually so you can teach me through your suffering.” That feels like a lot of pressure to put on someone who is ill, even if it is unspoken. If I look for a suffering fighter in a patient who cannot cast herself in that role, I risk disrespecting her experience. If I try to learn wisdom from a patient who does not see his illness as a journey to moral development, I might disregard his life story.
Medical school teaches me to synthesize and simplify information. The more narratives I hear, the more I feel a desire to string them together along a unifying theme. Cultivating attention to less common stories about suffering and loss reminds me to listen when I long to explain.
Sources:
Conway, Kathlyn. 2007. Beyond Words: Illness and the Limits of Expression. University of New Mexico Press. Albuquerque
Iyer, Pico. 2013. The Value of Suffering. New York Times. Featured image:
“After a Night Shift” by Stephanie Scott
