Posts tagged Patient-Provider Relationships
When the Best Prescription is Not to Cure

The unit is separated from the outside world by two pairs of locked double doors. A blinking green light and a soft beep herald our passage through them into a no-man’s-land where a guard sits, patiently unlocking the doors as we come and go. When I enter the airlock the first morning, hang my coat and stow my backpack, it feels as though I’m in a sci-fi movie, an intergalactic explorer awaiting my first excursion into the uncharted expanses of space. The atmospheres equilibrate and, I will soon learn, norms are stripped away, decompressed. Not sure what to expect, the door chirps open and I step into my month-long rotation on the inpatient psych ward.

Each morning, residents, psychiatrists, nurses, social workers, and I pile into a tiny, windowless room with chairs pushed up against the walls in two rows facing each other. I am the only medical student among them, a wide-eyed interloper squeezing into a center chair. Patients are led in one by one to sit beneath a watercolor painting of goldfish in a pond while we ask them things like, “How is your mood today?” and “Did you need your Zyprexa to sleep last night?” A pleasantly psychotic woman, untroubled by her delusions of being a powerful real estate lawyer – she is homeless but insists that her office has faxed her discharge paperwork – doesn’t seem to notice that I’m there. With fifteen or twenty minutes per patient and our elbows and knees bumping up against each other, these encounters are concentrated in time, in space, in feeling, and they leave me jelly-legged and dazed when I finally stand up hours later. Every minute I’m cycling through the full range of human emotion, from proud to sad to irate to hopeful. I fidget in my chair as tremulous patients beg for benzos. I hold back tears as a suicidal businessman crumples wet tissues in his bandaged hands. Sometimes I just stare at the goldfish and wonder if this is what it’s like to be crazy.

One day a few months prior on a surgery rotation, I stood in the OR at the end of a long case, carefully running a subcuticlar skin closure.

“You’re a natural.” The surgeon, arms crossed, looks over my shoulder. “What specialty do you want to go into?”

“Neurology.” I watched the last stich pull the skin into a taught pink line the patient would remember me by.

“Neurology?” She sounded confused. “But don’t you want to fix people?” Her jaw was tight and face serious.

This was nothing new. From the beginning of medical school we are taught to diagnose and treat. We recite mnemonics for the acute management of myocardial infarctions, and can name first, second, and third line therapies for asthma. We titrate blood pressures to evidence-based levels, and feel weirdly satisfied when our heart failure patients pee after a dose of diuretics.

We are taught to grow from the first year student who can report that something is wrong to the doctor who can do something about it.

On the psych ward, my patients’ foggy insights clouds my own. I find myself in the thick of the confusion with them, trying desperately to “fix,” to “cure,” to achieve some venerated end I had been conditioned to strive for, and driving myself insane with an inexplicable rage when I can’t. A woman with a functional tic can’t accept that her problem is not the result of medical errors and refuses psychiatric intervention. A kind man with bipolar disorder and an addiction who got high and tried to crash his yacht tinkers with his medication doses and stares silently out the window at the sailboats dotting the river below. A deeply depressed attorney can’t allow himself to just feel sad. Seeing them every day is excruciating: each carefully articulated question I ask falls flat, and simple conversations quickly turn into circular back-and-forth’s that devolve to the absurd. Every day I feel like banging my head against the wall, and each night I drag home the weight that others can’t carry.

Shelly* is 30-something, wiry, all clavicle and bony knees– breakable, almost – with thick glasses that magnify her round eyes and give her a permanently forlorn look. She wears Victoria’s Secret sweatpants with a black sweatshirt and Ugg boots, her long brown hair pulled into two braids that fall down her back.

The night before her arrival, she had lined up her anxiety pills, her mutinous artillery of serotonin and GABA, in one last attempt to create order in her chaotic life, before swallowing them one by one. However, her final act of treason was interrupted, and she ended up with us. When we first meet, she is reticent, eyes downcast, giving up only a word or two in barely a whisper. But soon, she opens up.

Two young women in a foreign land, we hit it off: she shows me the drawings she makes in the journal she guards tightly against her chest with crossed arms as she walks around the unit, and talks about seeing her dog when she gets home. She is tougher than her small frame lets on, both physically and mentally. After a week of dutiful CBT practice, she is deemed ready to go conquer her automatic negative thoughts on her own, out in the real world. On the last day of my rotation the two of us sit under the goldfish, talking about going home, about passing through the airlocked doors back to the outside world. Suddenly, her face clouds and she begins to cry for the first time since she’s been here. I hand her tissues.

“What’s wrong?” I break the silence.

“I feel like a failure,” she says through tears. “I’ve worked so hard, what if I’m not actually better? What if I go home and it all starts again?”

I pause.

“Well, at least you’re trying, right? That’s pretty good.” I watch her think about this for a moment, brow furrowed, tiny fists balled in her lap.

“Yeah,” she smiles a little to herself, eyes looking thoughtfully at the floor. “I guess that’s something.”

Back between the doors, I wait for the green light one last time. Four weeks, ten discharged patients, dozens of prescriptions, and countless long silences later, I don’t think I fixed anyone. I sat with them, though, through all the tears and all the tic-ing, and heard what they had to say. Maybe this is how we help: we shelter, we stabilize, we listen, and we together we take steps, however small. We may not always be able to fix. We may not know what happens when our patients leave the quiet of the pond for the rough ocean waves. But we try. Well, I reassure myself, I guess that’s something.

* Name has been changed

Emma Meyers is a third year medical student at Harvard Medical School. She grew up in New Jersey and graduated from Columbia University with a degree in neurobiology. She plans to do a residency in neurology. Outside of medicine, Emma enjoys art, reading fiction, hiking, cycling, and traveling.

One Moment in Time: A Patient’s Story

I want to tell you a story.

It took place during the radiation phase of my breast cancer treatments.

My radiation sessions were scheduled at the same time, every day, for six weeks. Each day I saw the same patients and the same technicians. We were all on a first name basis.  I saw the same hot chocolate-cappuccino-coffee machine, the same cheap plastic bowl of fresh apples, oranges and bananas, the same stack of well-worn out-of-date magazines, the same relatives and friends accompanying their loved ones, and the same zapping of radiation. The one thing that didn’t stay the same was our changing bodies. We were all deteriorating. Not only was my body changing from the radiation but also the deep chemically-induced menopause I was in, was severely affecting my quality of life. If you can imagine how regular menopause affects women who lose their hormones gradually over a period of years, just think how it felt to lose mine in two weeks. I was having extreme hot flashes every ten minutes, twenty-four hours a day, seven days a week, some so harsh they left me faint. Menopause can also create a depressed feeling and I felt that creeping in as well. My doctor told me that losing my hormones so fast due to chemotherapy was doing such a job on my body, it was like driving my car into a brick wall at forty miles an hour. I found his analogy validating because that’s exactly how it felt. Smash! Bang! Boom!

Just to let you know, radiation in itself is actually quite painless. Unfortunately, what happens as time wears on is the skin that’s been radiated gets burned. Sometimes it looks like a fashionable tan, sometimes it looks like a sunburn, and sometimes the skin gets so badly burned, the doctors have no option but to stop the treatments completely. That’s exactly what happened to my friend Lily. Lily and I met in the radiation waiting room while she was being treated for breast cancer. She was of Asian decent, and even though she stumbled with her broken English, and I with my Chinese, we understood each other perfectly. Just like schoolgirls, we saved seats for each other every day. We connected on many levels and as the weeks moved along, we developed a deep love and respect for each other.  One day Lily confided in me that she would no longer be coming for treatment.  She opened up her shirt and I couldn’t believe my eyes. The severity of the burns on her chest was shocking. I didn’t know if Lily’s skin was more sensitive than mine or her level of radiation stronger. What I did know was that Lily’s chest couldn’t tolerate any more and her treatments were stopped permanently. I felt terrible for the hopelessness of her situation and, selfishly, I also felt terrible for myself — I would miss her.  I made several attempts to stay in touch, but sadly Lily and I never saw each other again.

That’s not the story I want to tell you.

Another patient I met while sitting in the waiting room, day after day, was Peter.  He had prostate cancer and we soon became buddies. Peter’s treatments were affecting his hormone levels, similar in ways to mine. He was going through a male menopause of sorts, complete with hot flashes, weight gain, frequent bouts of crying, periods of insomnia, low libido and an overall lack of well-being.  He often shared his emotional and physiological changes with me in great detail because he knew I would understand. Peter and I developed quite a bond, playing pranks on each other regularly. Each afternoon, while waiting for his name to be called, he ate a banana from the fruit bowl.  Peter just loved bananas.   One day, he was late for his treatment and I noticed that there was only one banana left in the bowl.  I didn’t want anyone to grab it, so being the thoughtful prankster that I am, I snatched up that Chiquita and hid it in my pocket.  When Peter finally arrived, he ran over to the fruit bowl but alas — no banana.  His disappointment was palpable.

“What’s wrong Peter?” I asked.  “You look so sad.”

“I wanted a banana but there’s none left,” he answered.

“Awww…that’s too bad.  Well, look down here. Oh my goodness. Is this a banana in my pocket or am I just happy to see ya?”  Quickly I whipped out that banana and Peter’s face lit up. What a sight. To most people, this may have seemed like such a small thing, but those kinds of exchanges amused us to no end and it helped get us through the day.

That’s not the story I want to tell you.

We all had our own routines when it came to our radiation appointments. This was mine: I’d sign in, walk into one of five closet-like changing rooms located within arms reach of the patient’s waiting room, put on one of those terribly revealing hospital gowns and leave my clothes on the hook, praying that no one would steal them.  Of course, I really didn’t have to worry too much about that. Being 5 feet tall, my pants would look like knickers on anyone else. After that, I’d sit in the waiting room, have a cappuccino, chat with a friend, read a gossip magazine to get up-to-date with the really important issues in life, and wait for my name to be called. When I’d hear ‘Marla Lukofsky’ over the speaker, I’d be escorted into a cold room with a large radiation machine and would hoist myself up onto an even colder metal table. Then I’d slide the hospital gown down to my waist, lie there and watch the huge high-tech contraption move across the ceiling until its projected grid pattern aligned itself with the tattoos on my chest. The machine would then zoom in close, and the technician-of-the-day would run out of the room as fast as he or she could, and hide behind a five-inch-thick Plexiglas-sealed container. That got me to thinking, ‘Hey, if it’s that dangerous for them, then what am I still doing in here?’

“Are you ready, Marla?” the voice on the intercom would ask.

“Yes, I am.”

 “Okay, then. You can keep breathing, but DON’T MOVE.”

Talk about a contradiction. Then the radiation machine would let out a disturbing sound that alternated between a high-pitched squealing noise and a machine gun popping. In a minute or two it would be all over, only to be repeated several more times on other areas of my chest. Sounds pretty simple doesn’t it. They’d do their job by zapping me and I’d do mine by lying still and taking in the rays.

Each day was becoming harder than the next. I started to feel like I had nothing important to do.  In order to bring in some money and keep myself somewhat active and stimulated, I got myself a part-time job at the only place that would hire me, Tusquellas’ Fresh Fish Market. Can you imagine feeling nauseous and choosing to work in a FRESH FISH MARKET?  What was I thinking?  Talk about upsetting aromas!!! On the plus side, when I went into a huge hot flash, I’d just leave the customer in the middle of their order and jump into the walk-in freezer at the back to cool off.  Sometimes I’d come out with icicles hanging off my hair. I’m not kidding.

Every day like clockwork, while my spirits were plummeting, I’d leave work and go to my radiation sessions. The technicians would always ask me, “How are ya doing, Marla,” before we’d get started and no matter what I’d answer, they’d never say much back except for the expected platitudes.  I hate platitudes. On a regular basis I would challenge them.  “Don’t be so guarded with me or any of the other patients. We’re not going to hurt you, you know!”  I guess I made an impact because when I received my Certificate of Completion from the Comprehensive Cancer Center, there was a hand-written inscription on it saying, ‘Don’t be so guarded! All the best! Andrew and Judy.

That’s not the story I want to tell you either.

One day, while sitting on the cold slab in the radiation chamber, Andrew, my technician-du-jour, asked me how I was doing. Maybe he was expecting me to say the usual ‘I’m fine thanks and you?’ but I didn’t — not that day.

“To be quite honest Andrew, I’m awful. I work in a fish market, I smell like Tilapia, and I feel like I don’t have a purpose in my life anymore.” Then I started to cry and cry and kept crying as if I was making up for all the days that I hadn’t let myself cry. Andrew handed me a Kleenex and gently said,

“Marla, I think you do have a purpose. Maybe you just can’t see it right now.”

“What are you talking about Andrew? All I do is come in here every day stinking of fish, get zapped, glow in the dark and go home. Nothing more than that.”

"Well, I’ll tell you what I see, Marla. The other day we had a new patient. Remember? She came in with her husband, the one with the blue scarf on her head.  Well, as you know, we have to take a Polaroid picture of each new patient for our records, so that we can make sure we’re giving the right radiation to the right person.  Anyway, you and Peter were sitting together, chatting away as per usual.  Then we came into the waiting room to take that woman’s picture, but she refused to let us and started to cry.

‘No, you can’t take my picture. I’m ugly. I look terrible and I feel terrible, and I don’t want anyone to see me like this. No! You can’t take my picture.’

We explained to her that we couldn’t start her treatments until we had the Polaroid, regulations, you know.  Her husband tried to change her mind and another technician tried too, but she wouldn’t budge.  So, we left the room to re-think our strategy while she sat there still crying.  Then I saw you, Marla. You walked over to her, knelt down right in front of her, put your hands on her knees and said, ‘Hi, my name’s Marla. I couldn’t help but hear what you said about the picture, and the way you look.  I really understand some of what you feel — not all of it, because I’m not you, but I have to tell you something. Underneath my scarf, I look just like you.’

And Marla, you took off your red bandana and exposed your bald head to that woman, a total stranger.  Then you said, ‘You see?  I look just like you. And you know what else? I think you’re beautiful, and trust me, I know a beautiful woman when I see one and you…are beautiful.  I wish I had your looks. I let them take my picture and I’m nowhere near as beautiful as you. Now, if you don’t let them take your picture, then you won’t be able to start your radiation and the sooner you start it, the sooner it’ll be all over and you’ll start feeling better again.’ Well, Marla, the woman sat there for a minute, thought about what you said and blurted out, ‘OK… I’ll let you take my picture.’  As soon as she said that, we scrambled back in, snapped the shot, and got her into the radiation room.  Her husband was grateful and so were we. And now you come in here and tell me that you don’t have a purpose?  Well, all I can say is that what you did for that woman was a wonderful thing. You helped her get through a difficult time. What’s more important than that? I saw you take that banana for Peter and make him laugh. I saw you get that hot chocolate for Cheryl and get her to open up to you. Even though you feel terrible right now, you have to remind yourself that you help people…in more ways than you realize and, in my books, that’s having a purpose — a very important purpose.”

I was shocked by what Andrew had told me. I was more shocked by his total recall.

“How the hell did you know about that Andrew?” I asked. “Do you have hidden cameras everywhere?”

“Actually, yes, we do, in every room, with intercom systems. We watch and listen to everything that goes on around here.”

“Geez…if I knew that, I would’ve put on some lipstick.”

After Andrew left the room, I sat there absorbing all that he had said. He made me feel better.  He gave me a new perspective on things. You see…he took the time for me, to point out that I took the time for someone else.  It was only one moment out of our lives, one moment in time, but it gave so much and sometimes that’s all it takes to help each other get through to the next day and the day after that. Sometimes, it’s just that simple.

That’s the story I want to tell you.

Previously published in the International Journal of User-Driven Healthcare and Cell2Soul.

Marla Lukofsky is a Canadian/American veteran stand-up comedian, writer, breast cancer survivor and keynote speaker. Her voice can be heard as Good Luck Bear on The Carebear Cartoon TV series. Her writings have been published in various medical journals in North America including Cell2Soul: The Journal of Humane Medicine and the Medical Humanities, The International Journal of User-Driven Healthcare (IJUDH) as well as The Online Journal of Community and Person-Centered Dermatology (OJCPCD). Ms. Lukofsky shares her unique journey with cancer and life in the highly acclaimed show ‘I’m Still Here…and so is my Hair!’ to audiences across the Globe. She has also written her memoir by the same title.  Marla’s belief is that if she can touch even one person and have them feel they are not alone, then she has succeeded.

www.marlalukofsky.com

mmlukofsky7@aol.com

http://en.wikipedia.org/wiki/Marla_Lukofsky

What I learned in the Haitian Batey: Reflections from a dentist-in-training

The fact that Dominicans of Haitian descent are treated as foreigners in their own country was hinted at before we even arrived on the island. Contemporary Haitian immigrants to the Dominican Republic and prior generations experience racism and economic exploitation on a daily basis. Our Global Health service trip team was mostly white, so this discrimination would not affect me or many of the other students. However, a black girl from New Jersey was warned that if our guagua (bus) was stopped while in transit, she would likely be asked to step out by military personnel in an effort to control immigration from Haiti to the Dominican Republic. Luckily, we avoided this situation, but during my week on the island I observed many occasions of blatant racism that interfered with healthcare access for Haitians.

Each day our team traveled into “bateys” – communities – outside of Monte Cristi to support the local health center and their mission of guaranteeing patients the right to health. In the early 1900s, banana companies established bateys for the Haitians and Dominicans who worked the fields during the day, to provide them with a place to stay overnight. Many banana companies have stopped supporting the bateys, making life extremely difficult for those who live there – fruit pickers have been left without the means to support their families, and the economy suffers.

While I witnessed impoverished living conditions in all of the bateys, the Haitian batey was the most disadvantaged by far. We arrived at 7:00am to the abandoned banana packing plant and quickly transformed the area into a clinic. 30-40 patients were already lined up. Many of them had walked miles. Some of them had no shoes. Others were carrying one child on their back and another in their arms. I quickly gobbled down my granola bar while huddled over; in hindsight, I should have eaten it on the bus beforehand, away from the patients, considering many of them don’t have such easily accessible food.

As a pre-dental student, I had been assigned to spend the morning helping the dentist and her assistant. What struck me most were the Haitian children’s reactions to seeing the dentist, or lack thereof. In the U.S., it is not unexpected for a child to tantrum when propped up in the dentist’s chair. They clench their teeth closed and turn away from the approaching dentist’s hands. They cry for Mom or Dad whenever it’s deemed safe to open their mouth and howl. In contrast, not once at the pop-up clinic did I see a Haitian child fight the dentist. Not once did I hear them scream at the top of their lungs. Instead, often there without a parent, the child would lie on the chair with his or her mouth wide open, totally vulnerable, and not make a move or a sound. The dentist would scan and scrub and scrape, and then the child would sit up, lean over the side, and spit a mouth full of blood and plaque into a cardboard box filled with dirt. There were no stickers to reward their bravery or high fives from Mom or Dad. The kids were sent off with the only toothbrushes we had (boring adult ones instead of the fun, cartoon-themed ones often handed out in the U.S.), and started the long journey home.

I also experienced the impact a language barrier can have. Communication is perhaps the most important element in building a positive doctor-patient relationship. My day in the Haitian batey where everyone spoke Creole reminded me of this. Not being able to greet, instruct, or comfort these patients made me feel helpless. I still remember a middle-aged woman who let out groans so deep I couldn’t help but furrow my brow as I imagined her pain. “¿Qué le duele? / What hurts?” I asked. It was challenging enough to understand the woman’s response as she gritted her teeth and whimpered in agony, but when she answered in Creole instead of Spanish, I was filled with frustration. The language barrier made it difficult for me to clearly listen to or readily comfort her. Fortunately, we had a team of translators helping us. They translated from Creole to Spanish, and then another group translated from Spanish to English. Nonetheless, there was no way for us students or the non-Creole-speaking American doctors to directly communicate with her. I found this to be extremely limiting in assessing complaints and prescribing medicine.

As a pre-dental student majoring in Spanish, I hope to one day be able to combine my passions in order to communicate and empathize with both English and Spanish-speaking patients. My week in the D.R. affirmed the value of incorporating a Spanish language education into my dental career. Had the groaning woman spoken Spanish, I could have reassured her: “You were right to come here. Everything is going to be ok. We are going to help you.”

My week in the Dominican Republic ignited in me a desire to fight for equal access to healthcare worldwide. I will never forget the struggle of those who live in the bateys. Indeed, they will inspire me as I continue on my journey, and I hope to return one day as a practicing dentist. Until then, I plan to serve in my local community, as great disparities also exist in our own backyard.

Rachel is a junior at Washington University in St. Louis, majoring in Spanish and minoring in medical humanities. She aspires to practice dentistry and cultural humility in a medically under served area.

Making the Grade: Brain Surgery as a Treatment Option for Refractory Epilepsy

I was sorting through the sea of email, when I saw the Epilepsy Foundation of New England’s posting in purple and black font: Epilepsy Support Group Beyond Medication: A Discussion about Surgery. Though my seizures had been under control for almost three years, I still reviewed the foundation’s notifications. I noticed immediately that all the panelists were medical practitioners. There were no patients on the panel, and I felt indignant about this oversight. They needed a patient in the room – somebody who chose surgery as an epilepsy-treatment option, who could answer patients’ questions firsthand. I felt compelled to be that person, and avail myself to whomever showed up, so I registered, lined up childcare, and marked my calendar.

The event was held on a damp evening last spring. I took the subway to the Charles Street stop. As I navigated the streets in front of Mass General Hospital, I observed the traffic controller directing the EMT’s parking the incoming ambulances. I was struck by the sheer number of personnel required to deal with each traumatic predicament. As I watched, I was immediately brought back to the day I required emergency brain surgery: I had been rushed to this very place, where a neurosurgeon on call performed the operation. I thanked my lucky stars that day was almost three years behind me. Now I was at MGH by choice, on my own terms.
The panel was held in a cramped nearly windowless conference room. I settled into a chair, and looked around the table. The MGH doctors were easy to spot in their standard white coats, and I recognized the third doctor from the Epilepsy Foundation’s website. The fourth practitioner was the nurse who was leading the meeting. The patient turnout was even smaller than I expected: There were four of us, one patient for each presenter.

We each introduced ourselves and I learned that every patient in the room had already had elective brain surgery to try to control seizures. (So much for my good intentions of sharing the scoop on surgery with somebody who was on the fence.) The nurse gave a PowerPoint presentation, complemented by a three dimensional plastic model of the brain. She passed the molding around, and explained the basics about seizures and brain surgery, acknowledging that everybody in the room probably already knew a lot of this information. I suspected she was more disappointed than I was.

The attendees’ demographics were varied – we represented different races, genders, and ages. Only two of us had full seizure-control – myself, and another patient whom I’ll call Marie - and each of us had two different brain surgeries a piece. Marie had initially had a vagus nerve stimulator installed, which entails inserting a silver dollar-sized pacemaker-like device into the upper chest that a neurosurgeon winds around the vagus nerve in the neck. When Marie’s seizures recurred, she resorted to a full-fledged craniotomy, which was successful.

I first had an elective right temporal lobectomy in April 2014. I was seizure free for two months, until my brain imploded due to a subdural hematoma that had developed subsequent to the surgery. A subdural hematoma is like a giant bruise on the thick membrane under the skull, surrounding the brain. I’m still not sure why the hematoma developed. The neurosurgeon said it may have been caused when a vein in my brain got stretched during the temporal lobectomy. But it may have been brought on when I accidentally banged my head against the freezer door, while retrieving the ice cube tray. The emergency craniotomy was harrowing, and brought on a series of grand mal seizures – four in a week. Full recovery took over a year, as I had to take inordinate amounts of anticonvulsants, to control seizure activity. The medications made me lethargic, but over time I was able to titrate them down to something tolerable. Eventually I was both functional and seizure-free.

My neurologist calls my story a success, which feels like a misnomer. While it’s true my seizures were ultimately brought under control, it seems misleading to call a procedure “successful” when it results in a grueling near-death experience. Yet as I listened to the others’ stories – those who had only had one brain surgery, and still had refractory seizures – I felt lucky. One patient also had severe memory loss resulting from the surgery. The other spoke of the disappointment that came with having his driver’s license revoked after the seizures returned. Their journeys are confirmation of surgery’s poignant fallibility.

Brain surgery has a 70% success rate as a treatment option for refractory epilepsy, a percentage most teachers would call C minus. When you get a mediocre grade at school, there’s typically wiggle room to make it up – an extra credit assignment, or retake exam, perhaps. When brain surgery doesn’t work, the only possible option for a grade boost is a second surgery. At best this is a huge undertaking, beset with a multitude of invasive extensive pretests. Yet that is what the neurologist is likely to suggest to a post-surgery epilepsy patient who still has refractory seizures.

When the panelists asked for feedback I piped up, “I think it’s surprising that everybody in the room has already had surgery. I expected there would be patients here with questions about surgery, but we’re all old hands at this.”

“My patients think if they attend something like this, they’re committing to having surgery, and they’re not ready yet,” an MGH neurologist responded. “What advice would you give to a patient considering surgery?” she asked the group.

“I’d tell them that if they’re brave enough to live with uncontrollable seizures, they definitely have enough chutzpah to undergo surgery,” I offered. “I’d tell them it’s a scary, taxing procedure, and no matter how good your doctors are, there’s a lot they don’t know. Also there’s no guarantee of success.” I looked at the others around the room – we were living proof.

Perhaps the doctor would pass my insights on to her anxious patients. One thing I knew for sure: a doctor cannot convey the huge disappointment a patient feels if s/he goes through this procedure, and still has seizures. For the patient choosing brain surgery to treat uncontrollable seizures, there’s a 30% chance of that outcome, making it a significant gamble. They should make that wager only after they’re fully informed about the mediocre success rate, and the ample risks involved, as they are taking an enormous leap of faith. Hopefully, they will make the grade.

Laura Beretsky is a writer who lives in Somerville, Massachusetts with her husband, children, and cat. Her poetry has be previously published in Poetry Motel, and The National Library of Poetry's Moment in Timejournal. She is currently working on a memoir about growing up and living with epilepsy.

Ouch

Putting the pieces of pain together can’t be done by just asking, “Where does it hurt?”

I have always been somewhat accident-prone. Each time I tripped and fell as a child brought the same routine. I would sit on the edge of the tub in my parents’ bathroom with a bleeding knee and a tear-streaked face as my mom or dad got out the Band-Aids, Neosporin, and the despised hydrogen peroxide (it stung too much when it fizzed). I would point to the scrape and roll up my sleeve to reveal any other “boo-boos.” I would leave their bathroom with my lacerations clean, my face dry of tears, and feeling okay, albeit a little achy.

Nearly fifteen later, as a sophomore in college, I shadowed Dr. X every Wednesday afternoon for the practicum component of a semester-long course on Medical Professionalism. In Dr. X’s office, many patients would come in with a laundry list of pain, soreness, discomfort, and hurt. The question “Where does it hurt?” seemed insufficient to understanding their pain fully. The patient may have struggled to push back on Dr. X’s hand with their face. They sometimes found it difficult to answer inquiries such as, “When did the pain start?” or, “Is it radiating?” All of these are pieces of the understanding required to provide adequate and appropriate treatment. Doing so demands the asking the patient multiple pointed questions while also testing them physically. This understanding appeared to be elusive and difficult to acquire for three main reasons: time, creativity, and trust.

Time

During my Wednesdays with Dr. X, I often noticed a tension between the care patients want and the realities of care in our current healthcare system. Patients would often try to show her pictures of their grandchildren or a recent vacation. Sometimes, they, an aging parent, wanted her to explain over the phone what was wrong with them to a concerned child who could not make the appointment. She always obliged as best she could but the system in which she provided care made it difficult. Dr. X was known in her practice for seeing roughly half as many patients as her fellow physicians. She often mentioned to me how difficult it was to accommodate these seemingly irrelevant components of a patient visit when they were often what made the patient most comfortable and most inclined to tell their story.

The doctor’s visit with the patient can only last so long, for other patients need care too, and there are only so many hours in the day. Thus, even when the “right” questions are being asked, patients may not have the opportunity to fully translate their feelings, aches, and pains into words with context (a mosaic of experiences, emotions, environment, and everything in between). As a result, it is challenging to gain a strong understanding of what they are experiencing and subsequently make a suggestion about how to treat their condition(s).

Creativity

I often noted Dr. X’s inventiveness on our Wednesdays together, inspired by her ability to ask questions that led her closer to a diagnostic truth regarding the patient’s experiences. Sometimes people are insecure about their diets, how much they exercise, how often they take a prescribed medicine, and other areas of their lives in which they are not perfectly compliant with doctors’ orders. Thus, we are less likely to offer responses to a provider’s question that allow them to help us, for we are trying to protect ourselves without even realizing it.

This reminds me of visits to the dentist. When the hygienist asks if I’ve been flossing as she scrapes and polishes my teeth, I know that I have to be honest because she has the proof right in front of her. But we all often lie, feeling sheepish for not doing what was asked of us.

Sometimes a matter-of-fact question like, “Do you go to the gym regularly?” is sufficient for a useful answer that guides the doctor to a diagnosis. However, sometimes it seems more appropriate and productive to ask, “What is your daily schedule?” This gives the patient a chance to tell the doctor what they want, be it that the entirety of their exercise regimen consists of walking to work, or that they stop at Chick-fil-A on their way home for dinner. Although this question may not have appeared at the start to have a direct correlation with healthy eating/regular exercise, it may make the patient more comfortable and allow for a more organic conversation. When Doctor X asks more flexible and open questions, this allows for more creative and varied responses that are generally more constructive toward devising a care plan.

Trust

Meeting a patient where they are in a non-judging, kind, and sensible manner, they are much more likely to open up and let the provider know what hurts and how they feel. I trusted my parents to clean my wounds after a fall off my bike and bandage me all up, pointing them to the areas in need of a little love. Similarly, I observed Dr. X’s patients explain pain “at a level eight” that keeps them up at night with a trust that she will take their words and turn them into a diagnosis and treatment that gives them relief.

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Although all patients are different, everyone expects individualized care from their doctor and are usually hoping to be healed. Time, creativity, and trust are crucial pillars that support how the provider meets their patient’s needs by putting their symptomatic puzzle together into a diagnosis.

When I was a little girl, I expected my parents to take my skinned knee and clean it up so that I was good as new. With Dr. X’s patients, their complicated aches and pains require more than just a Band-Aid, but she does have the power to offer them solace. I hope one day to be able to provide antidotes for my patients’ pain, and will strive to ask questions that allow me to do so.

Hannah Todd is a rising senior at Rice University, where she is majoring in Spanish and Policy Studies with a minor in Medical Humanities. Additionally, she is concurrently pursuing her Master's in Public Health at the University of Texas and ultimately plans to attend medical school, which would allow her to integrate personal, academic, and professional experience into care for and policy regarding children with medical complexity.

The Big Questions and Gray Areas: How I Grew During Third Year of Medical School
"Three Pairs" by Nicolette Overton

"Three Pairs" by Nicolette Overton

“It was incredibly hard. I learned more than I ever thought possible.”

My childhood friend Allison had asked me about my third year of medical school, which is notorious for being challenging, overwhelming, exhausting, rewarding, and exhilarating.

The first two years of medical school are typical school with weekday classes and unit tests every few weeks. Then during third year (called “core clinical” year), we are immersed in the day-to-day work of being a physician. We spend approximately 8 weeks working with resident teams in the hospital in each of the core medical disciplines: internal medicine, surgery, pediatrics, obstetrics/gynecology, and psychiatry. At the end of each rotation, we complete a national exam.

I went into third year expecting to apply, reinforce, and build upon the book knowledge accrued during my first two years of medical school, blissfully unaware of the uncertainties and philosophical challenges inherent to a patient’s medical care. But during third year, I mainly had to learn acceptance. Acceptance that medical decisions are rarely obvious, that internal validation need not be secondary to external validation, and that the best patient care starts with proper self-care.

As medical students, we have a vague understanding of the limitations of medicine. A Wall Street Journal article entitled “Why Doctors Die Differently” by Dr. Ken Murray details the phenomenon of medical professionals utilizing fewer medical services than the average American when making end-of-life decisions. Medical professionals witness patients receiving interventions that prolong the days, but sacrifice the quality, of life. People who work in medicine see the tolls that CPR, feeding tubes, and ventilators place on already vulnerable patients. The general public has been primed by the media to see these treatments as more often life-saving than not. Those without medical backgrounds hear what is possible; but medical professionals recognize what is realistic. During medical school, we are taught the contraindications to certain procedures or treatments. There is rarely discussion about what to do in that murky in between: when something can be done, but may not be in the patient’s best interest.

I will never forget a patient I had on internal medicine whose daughter demanded he be “full code”, meaning that if the patient went into cardiac arrest he would receive CPR and a breathing tube to be kept alive. The patient was 88-years-old, with metastatic colon cancer and an infection in his blood. I felt for the daughter of the patient. She had no other experience with this sort of care. I also felt for the medical provider, who described that giving this patient CPR would be inflicting immense pain and suffering (ribs break during CPR) to a patient who had an already poor prognosis.

These situations were common in the hospital. In these moments, I felt as if I existed in limbo. I resided in the in-between space; I was both the medical professional and the patient’s daughter. It was from this vantage that I realized everyone has the same goal: self-preservation while acting in the patient’s best interest. Each side just approaches the situation from a different angle.

End-of-life discussions were the moments when I grew the most. All of the physiology, pharmacology, and anatomy that I fervently studied meant very little when trying to quantify the quality of a patient’s life. I came to understand that sometimes, the best thing to do is step back, assess the bigger picture, and ask ourselves what we are trying to accomplish.

I also took stalk of my own life during third year. I have always put pressure on myself to be “the best” and honed study skills over the years so that I know what I need to succeed. In third year, the evaluations by our attendings and residents are also factored in to our final grade. The way a student’s personality, interests, and sense of humor jived with a resident’s often reflected the student’s grade more than anything else. In the beginning of the year, I would often change my interests and style to fit that of the attending. I approach medicine from a bio-psycho-social perspective, but many of the doctors with whom I worked did not. Often, a doctor would scoff at the socio-economic factors involved in the patient’s health. I would feign disinterest, if only to appease the resident. As the year went on, I came to value my opinion of myself more than any one attending or resident’s opinion of me. Patients went out of their way to thank me for my help and ask for me to be there with them during procedures, which reassured me that my approach is valid. Though I did not always receive the best numerical grade, I was able to sleep better knowing that I provided patients with what I believed to be the best possible care.

Third year forced me to consider the big questions. I needed to come to terms with the impossibility of being “the best”, realizing that it can be easy to become so hyper-focused that we neglect what’s truly important. I faced my fears: not only will I not excel at everything, but I can’t expect myself to. I realized that ethical gray areas exist, and that what I typically worried about didn’t really matter. I had to start balancing self-care with self-actualization, and for that I would not trade anything.

Alyssa Wohl is a now fourth-year medical student from New York. She is hoping to work as an Adolescent Medicine doctor. She enjoys chocolate, yoga, and spending time with her two pugs.

The Show

This week in shadowing, we saw a coronary artery bypass. Because we shadow anesthesiology, we get to see the doctors and nurses set up. It is like setting up a show, everything must be done a certain way in a certain order. From inserting the catheter to carefully draping him so only the necessary areas of his body were exposed (in his case, his entire torso and his legs) and even unwrapping the towels a certain way, everything must be done just so and this was all before he was even cut open. A nurse got us step stools to stand on so we could see. The surgeons walked in at the last minute, taking the drill and the blade and adjusting the lights above. Then, they got to work and we stood there mesmerized until we had to go back to class.

On the walk back to campus, I was in a daze. Upon reflecting on the experience, I found it to be simply bizarre to consider how the show and many others like it are continuing in operating rooms all over the world while we walk outside in the light of day. I couldn't stop thinking about the aftermath of the show. When I was in fourth grade, I was the wicked witch of the west for my class’ version of the Wizard of the Oz and the face paint dyed my face green for three days after. The show was over but I felt like it was still happening to me.

The man who underwent surgery today is going to wake up and hurt. But the surgeons had to break him to fix him. It was simply another day of work for these doctors. The anesthesiologists likely won’t see the patient again, but the surgeons, the ones who weren’t even there from start to finish, will be the ones to see him again when he wakes up. He will go home eventually and have a long, difficult recovery from this invasive surgery.

I admired the patient’s bravery and the surgeons’ dexterity. I was amazed at the anesthesiologists’ ability to compute complex body statistics against powerful medications. If I walked out in a daze and the man under the knife walks out in pain, how do the doctors walk out? Do they hurt, too, when they imagine what it feels like later to have the many sutures down your chest? Do they smile when they think about the years of life they added to his by just doing their job? In the operating room, they are all one show: surgeons, anesthesiologists, nurses, perfusionists, and even us undergraduate students. Outside, we are a fragmented entity that carries only our unique perspective of the show, combined with some input from their explanations.

As a doctor, I will need to learn how to make sense of the show every day. To care for children with medical complexity, children whose needs do not fit inside a single diagnosis or a single medication, I will need to work in teams to put on good shows. But at the end of the day, when I will go home hopefully to my family, I wonder where I will put it. I am an empathic, emotional, and sensitive human being, but I am also driven and dedicated. I believe that I will learn how to integrate what I see of and the role I play in the show into who I am, without losing myself in the process.

Hannah Todd is a rising senior at Rice University, where she is majoring in Spanish and Policy Studies with a minor in Medical Humanities. Additionally, she is concurrently pursuing her Master's in Public Health at the University of Texas and ultimately plans to attend medical school, which would allow her to integrate personal, academic, and professional experience into care for and policy regarding children with medical complexity.

My Breast Cancer: Reflections Sixteen Years After Diagnosis

By Leah Meyer

As a social worker at Massachusetts General Hospital in Boston, Sandy often works with young adults who receive potentially life-threatening diagnoses. “I think it’s absolutely jarring”, she reflects on the experience, though not solely in her capacity as a provider. Sandy was diagnosed, herself, with bilateral breast cancer when she was 35.

That first year included bilateral mastectomies, two different kinds of chemotherapy, and radiation. Then followed 15 years of hormonal therapy, so “technically”, she states, “I didn’t end treatment until a little more than a year ago.” Though cancer doesn’t affect her day to day existence anymore, it has certainly not disappeared from her life. She refers to it, wryly, as “the gift that keeps on giving.” She still sees the oncologist every year and waits anxiously for the results of her annual blood tests, and her history as a cancer survivor has forever shifted her self-perception and the way that others perceive of her.

When reflecting on her own treatment, Sandy thinks of the work she does with people in recovery from addiction, citing the value of the “one day at a time” philosophy prominent in 12-step treatment models. “I really took my cancer diagnosis and took life a day at a time…I think I was already living that way in part because of the work that I did,” she recalls, but cancer made this way of life even more pressing. Early in her diagnosis, soon after completing the most aggressive stage of her treatment, she remembers that she stopped saving in her 401K. “In part”, she says, “because you wonder, am I gonna be around for retirement?” She wanted to spend her money, to go on fun trips and do the things she had always dreamed of doing. Nowadays, with the fear of recurrence less of a constant in her mind, she has shifted her perspective slightly. “I have to make plans for tomorrow, but I have to live in today.”

And so it comes back around, her experience in return informing her work. “I think it’s actually helped me be a better social work provider because I know both sides...you know what it’s like.” She urges providers not to make assumptions about patients and their priorities, as she herself experienced when preparing for her own double mastectomy. Sandy, who is a lesbian and an accomplished athlete, recalls that one of her doctors made a comment on how the surgery would give her the “athletic body” that she had always wanted. “That was what I wanted? No,” she corrects, “I’d rather have my boobs.”

Some of the memorable lessons Sandy holds close required a different kind of strength from her usual persistence and fighter’s attitude. As an example, she remembers attempting to tackle a strenuous ropes course as part of an Outward Bound community building activity with her breast cancer support group while in the midst of treatment. Always one to try the hardest route, she fell her first time through, but she got up and tried again, this time taking a gentler approach. “Sometimes the easier way is the better way,” she realized, and she has carried this lesson forward.

She has found the humor in her experiences too, believing that “you can do stand-up comedy about some of the things” that cancer brings along, telling the story of a prosthetic breasts mishap on the golfing range. And there’s always new material. You have to keep laughing.

As for advice to others navigating similar health challenges, Sandy says “don’t let it stop you.” She acknowledges that you may have to “accommodate” the cancer, but you can (and must) keep going. “You can have aggressive cancer and aggressive treatment and still get better,” she reminds us. Also, she encourages people undergoing treatment to identify what kind of support is helpful and to seek it out. Personally, she finds the hushed, knowing prompts of “how ARE you?” annoying, but knows that some people like to be asked. “Whatever works for you, teach your friends,” she urges, “find community.” Finally, and perhaps most importantly, “try to celebrate each day.” Some days, Sandy remembers, “I was miserable, I was sick as a dog. But I still tried to put good things in each day no matter how crappy I felt, and that made it easier to get through.”

Dr. Annie Brewster, a Boston internist and founder of the Health Story Collaborative. Leah Meyer is an intern with Health Story Collaborative and a student at Yale College.

When There’s No One to Call: Caring for Patients Who Lack Social Support

An interview with Dhruv Khullar,M.D., M.P.P.

By Val Walker

Introduction: Social Isolation is an Increasingly Important Topic

Could there be anything more frightening than going to a hospital alone for surgery, knowing that no one will be by your side when you wake up afterwards?  What if you have no one to turn to for help when you become seriously ill?

As a former rehabilitation case manager, I witnessed too many patients without social support. Too often I scrambled to contact any possible friends or relatives to help, and came up short with utterly no one available. I turned to social science research to better understand why people were so isolated. An alarming AARP study in 2012 on social isolation highlighted formidable barriers to social support:

  1. Living alone (Nearly 40% of adults over 65 are living alone.)

  2. Mobility or sensory impairment

  3. Major life transitions/losses.

  4. Socioeconomic status (low income, limited resources).

  5. Location (rural, unsafe or inaccessible neighborhoods)

  6. Being a caregiver for someone with a major impairment.

Moreover, the study revealed that full-time caregivers are mostly women who are often alone without support while struggling to take care of their own health care needs.

 The AARP study convinced me that being socially isolated is most often not a choice. Many societal and economic forces prevent us from being able to count on each other for support. Today we're more likely to find ourselves alone in a hospital regardless of how much or how little we've invested in our relationships. Indeed, in 2012, I found myself alone, stranded in a hospital bed after my hysterectomy because my friend failed to show up as planned. I had no one to take me home, and no one to check in on me during my first days after my surgery. I had made firm arrangements, but people just did not come through at the last minute. This shocking experience opened my eyes to how alone and stranded any of us can be.

Recently I read a New York Times article titled How Social Isolation is Killing Us by Dhruv Khullar, MD, who works at Massachusetts General Hospital. Dr. Khullar's compassionate view of his socially isolated patients sparked my interest in contacting him for an interview. Annie Brewster and I were thrilled when he responded to our invitation and agreed to talk with us.

Q&A with Dhruv Khular, M.D.

You wrote a powerful piece for the New York Times called How Social Isolation is Killing Us. As a doctor at Mass General Hospital, do you personally see an increase in socially isolated patients?

Dhruv Khullar:  All the time--every day, I see real life evidence of how isolated people are. And social isolation is increasing.

Lots of interesting statistics are out there about social isolation, but it’s my personal experience that motivated me to write more about this problem. I see elderly as well as younger patients coping with a lack of social support. We’re now living in a world of smaller families, and we often lack the extended support that larger families once provided. I see older patients living without their core group of support after many of their loved ones have passed away. And many younger people are dealing with the stigma of addiction or mental health issues, so their social support has been thinning out.

In our digital age, we can have 1000 friends on Facebook, but who is going to show up at the hospital for us?  Who is really there in our support system? Many connections we have through social media are only secondary supports, not the one or two people we can really count on in a crisis.

What can doctors do to help socially isolated patients?

Dhruv Khullar:  I think it’s in the doctor’s purview to ask about the social needs of our patients. Doctors have an important opportunity to screen for social isolation just by asking a couple of questions. We can identify isolated patients by asking simple, concrete questions such as “Who do you have to talk to about your surgery?” Or “Is there someone to take care of you when you go home?” Just two or three basic questions can make a difference. Also, practical, care-based questions are less likely to be threatening for a patient.  Instead of starting with psychological issues (“Are you feeling lonely?”) we can ask, “Is someone coming by to see you today?”

And once we have identified a patient who lacks social support, we can make a referral to a social worker, chaplain or hospital volunteer. They are a crucial part of the team. Healthcare has become so complex, it’s better to deliver care in a team-based setting, especially for a patient who has no one to rely on. Though we as doctors can play a vital role in identifying socially isolated patients, we need to alert our team so these patients get connected to the best services that meet their needs.

What you said makes so much sense. It does seem natural that a doctor would ask questions about who is caring for you—who is there for you. And further, I’m wondering this:  If your doctor is genuinely concerned that you don’t have anyone there for you, could these questions encourage you to talk openly about your lack of support?

Dhruv Khullar:  Yes, I believe asking simple, care-based questions can make it easier for patients to have an honest conversation about their need for more support. And this conversation could alleviate some of the shame and distress about being alone without support. Conversations, even brief talks with doctors, have a way of normalizing what has felt uniquely embarrassing or shameful. A patient might not feel so alone when their doctor emphasizes that social isolation is a common problem.

You got me thinking about the stigma in our society that makes it so difficult to speak up if we lack social support, and are truly alone. We don’t want to appear “needy.” What do we do if we really don’t have people to turn to when we must have surgery, or find ourselves seriously ill? Isn’t talking about being alone and needing help a hard conversation to have?

Dhruv Khullar: Conversations can start with a doctor or healthcare provider, even if we are too ashamed to discuss our lack of support with someone else. Once the conversation has started, patients may be able to face their need for support with less shame and more action. Once again, care-based, concrete questions can help us speak openly, and begin planning our care, including making referrals for the support that is needed.

We need to have more conversations about social isolation. The more candid the better. Hopefully we will find the courage to ask, “Will you be there for me?” And we will keep talking until we know who we can count on.

Besides making referrals to hospital social workers, chaplains or volunteers, is there a particular resource that you find helpful when you identify a socially isolated patient?

Dhruv Khullar:  I highly recommend the Health Leads program. This service is available in many hospitals in Massachusetts and other areas of the country. It can help connect patients to services they need, with links to community resources.  I use it very often.

When interacting with a patient who is alone and lacking support, what do you say or do to put them at ease?

Dhruv Khullar:  In the busyness of the hospital what sometimes gets lost is the human connection. One patient I remember was dying alone, without any loved ones around. At those times, it’s important just to listen. So I listened to whatever he wanted to talk about. Being present was as valuable as anything else I could do.

In my experience, even in just a few minutes, there are moments for deep connection. If we make the time, we can deeply and honestly communicate about what’s most important.

I’m really moved by your words. Thank you so very much for your generosity and insight, Dr. Khullar. And I’m so grateful that you’re encouraging people to talk more about this problem of social isolation. You have validated for me just how vital it is to have honest, realistic conversations when we need to ask others to help us.

Dhruv Khullar:  Thank you, it was a pleasure to talk with you today.

Resources

More about Dhruv Khullar

Health Leads Program

AARP Study on Isolation: Framework for Isolation in Adults over 50

Dhruv Khullar, M.D., M.P.P. is a resident physician at the Massachusetts General Hospital with interests in health policy, economics, and journalism. He is a contributor at the New York Times and writes regularly for both mainstream and academic publications, exploring evolving trends in medicine and health care. He recently worked at the ABC News Medical Unit, where he helped curate and communicate health information, and was previously at the White House Office of Management and Budget (OMB), focusing on Affordable Care Act implementation.

Khullar graduated with honors from Yale University (B.A. in Biology), and earned his medical degree (M.D.) at the Yale School of Medicine. He also received a Masters in Public Policy (M.P.P.) from the Harvard Kennedy School, where he was a fellow at the Center for Public Leadership. His work has appeared in the New England Journal of Medicine, Journal of the American Medical Association (JAMA), New York Times, Washington Post, Wall Street Journal, USA Today, The Atlantic, Slate, Politico, and Scientific American. He was recently recognized by LinkedIn as one of the Top 10 Healthcare Professionals Under 35.

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Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com

When Hope is Hard to Find, Keep Looking

This patient on my mind—let’s call him Sam—is smart. Sharp might actually be a better word. He knows what he should say to get out of here, and he probably even knows how to do it gradually enough so that we believe him. Sam knows our attending thinks he’s afraid of people caring about him, for instance, so he could play that up and pretend to let him in, fabricate a healthy exchange. These are the thoughts I have about Sam on the walk home, typing furiously away at my notes in my phone, with the hope that they’ll stay in the document and out of my head. I think about Sam, what he says, and what he actually means.

Sam has made multiple attempts to kill himself. He’s had a tough life, and I won’t attempt to explain the root of it all. He accepts his pain as constant, and he does so without drama. He fits the criteria of involuntary commitment because he’s at what’s considered an “unacceptably high risk” of hurting himself if he’s discharged, and he’s waiting for placement at a state hospital, where he’ll be for an undetermined amount of time. Sam keeps asking what the point is, saying that he’ll kill himself when he leaves, that he doesn’t envision a future for himself. Still, he repeats all the things he knows will keep him here. Why does he set himself up to be institutionalized, if he really wants to leave and end it? Does he want help, but is so incapable of asking for it, that he’ll say whatever will compel us to keep him here? How can we connect to him, if that’s the case?

At first glance, Sam looked to me like a lot of teenagers do, with this angst sort of hovering over him, sulking around with huge headphones on and refusing to show up to morning rounds. I’d catch him at groups, sitting with his hands glued in his pockets or folded against his chest. When I say Sam is smart, I mean I think Sam is probably a lot smarter than me. He’s cynical, with a sort of wisdom and a dry humor that ages him and makes him easy to relate to. Sam will laugh at you when he knows you’re trying to “doctor” him, an effective way to puncture and deflate your ballooned ego.

He brightened up a little while we played scrabble during group one afternoon, making me think for a moment, I don’t know, maybe there’s a chance for him. It’s frustrating, maddening even, to see a guy as sharp, as funny, as “normal” as he is, describe how painful life can be, and watch him carry that pain so complacently. But I can’t be mad at Sam for being in the kind of pain he’s in, I can’t even blame him for wanting to hurt himself. The fact is, I’ve only been here a few short weeks. Who am I to say he’s being selfish or pessimistic? Through his charm, in a way, Sam throws a wall up around himself, one you feel like you can’t tunnel through no matter how “real” you are with him. How can you really know him? How can you understand what he’s going through, and how can you know what to do to fix it?

I like to check off boxes, to feel like I’ve accomplished something. I like to feel as though I can walk out of a patient’s room having made a genuine attempt to contribute to their care. With Sam, it feels impossible to do that. At the end of the day, I am one of a batch of students with stiff, starchy white coats that cycles in and out of this locked unit for six weeks at a time, eager to “let these patients in,” but it’s likely that nothing will change for Sam and his painful reality in that time.

I pursued medical school with an idea. I even wrote about it in my application. I wrote that I wanted to become a doctor so I could meet people from all over, each with a story of their own, and that I could take a little piece of them with me and that all those pieces would add up to something meaningful. I think this became a part of my mindset growing up. My dad was in the military, and he traveled all over the world flying huge carrier airplanes. My siblings and I lived on a military base with my mom, and with each trip we waited for him to bring back all kinds of souvenirs and stories. I started to dream up all the places he went to, and the people who lived there. I kept a picture of a pyramid he took while he was in Egypt on my bedside table. I imagined people with lives so different from mine, and I convinced myself that as a doctor, I would find the most opportunities to encounter all these people, to get to know them and become a part of their stories while they became a part of mine.

When I met Sam, I began to wonder if all those pieces I’ll take with me would eventually show me how futile this job can feel. It started to feel like so many of the pieces we take are the ones full of pain and hopelessness, frustration and grief, and fear. My short experience with Sam puts a stark but simple realization back into view. I can’t fix his life, or hand him some profound new way of dealing with it. And it’s not about what feeling of accomplishment I can gain from working with him. All I can do is try my hardest to know where’s he coming from. I can educate myself on all the options he might have—medications, therapy, or anything else I can think of. I can help lay them all out for him and try to be prepared to answer any questions he might come up with. I can be honest with him, and I can listen. I can try my best to know what he cares about most, what he fears most.

Maybe that’s unsatisfying, but I think that’s sort of the point. You have to keep trying, whether or not the feeling of self-satisfaction ever comes.

Read more from Medical Student Voices here

Learn more about the Community Voices and discover more empowering health stories here

Jacqueline Hodges is a third year medical student at Tufts University School of Medicine. She is from Gainesville, Virginia and graduated from the University of Virginia, where she majored in biochemistry with a minor in global public health. Jacqueline is pursuing a dual degree in medicine and public health at Tufts and plans to do a residency in internal medicine. Outside of medicine, her interests include graphic design, hiking and traveling, and eating Korean and Southern food.

Back to Basics: Medicine’s (Re)Turn to Storytelling

Storytelling seems like a strange topic for a daylong event in the middle of Hubweek, a weeklong celebration of “innovation at the intersection of science, art, and technology” in Boston. Innovation implies novelty or discovery, but storytelling is ageless: we are, after all, narrative creatures, hard-wired to tell stories.

 

The panel discussion during Storytelling and the Future of Medicine—the concluding session of Hubweek’s Medical Storytelling event—focused on defining why storytelling in medicine is natural as it is innovative. Featuring Jon Adler, PhD, Annie Brewster, MD, and Suzanne Koven, MD, and moderated by WBUR reporter Rachel Zimmerman, the panel reflected on medicine’s (re)turn to its narrative roots.

 

Despite our narrative nature, modern medical practice has minimized intimacy of caregiving and storytelling. To an extent, modern technology has dehumanized medicine and, in its turn, muffled the patient’s voice. Clockwork appointments leave little time for interpersonal exchange. Diagnostic technology lets the body speak for itself. As a result, patients feel dissatisfied and isolated, and caregivers burn out.

 

While medicine and storytelling are staged as opposites, their relationship is complementary and vital: health and healing are possible only at their intersection. Where the medical institution has established boundaries or binaries, Dr. Adler, Dr. Brewster, and Dr. Koven have all found remarkable overlap.

 

Dr. Adler, who studies narrative psychology and identity formation, spoke about the ways stories influence our sense of self. Storytelling puts both routine and extraordinary life events into context. Our life stories are mutable: we are constantly contextualizing and re-contextualizing our lives. Mental health is thus intimately tied to the way we frame our stories and make sense of our their high points and low points.

 

Dr. Brewster’s work as an internist and as founder of Health Story Collaborative are rooted in her interest in human connection. As a patient with Multiple Sclerosis and a medical provider deeply interested in the stories of her patients, Dr. Brewster understands the power of listening and being present. Illness and health challenges are isolating and frightening, and stories can provide moments of connection and relief in the face of such incoherence. The listener is as crucial as the teller precisely because the listener is able to accompany the teller, to be present when everything else seems to fall away.

 

For Dr. Koven, Writer in Residence at Massachusetts General Hospital, medicine and writing were not always two intertwined pursuits. Although she is a lifelong reader and writer, Dr. Koven was trained to separate her two passions. Her view was transformed as she recognized the resemblance between writing and healing and storytelling and clinical practice: stories were key to understanding and caring for patients. What’s more stories give caregivers the opportunity to make sense of their experiences in the rushed and fragmented circumstances of modern medicine.

 

For all three, to understand the achievements of modern medicine is to understand its shortcomings. Medical advances have come at the cost of human connection and storytelling, and patients and physicians alike have expressed their dissatisfaction at the structure of modern medicine.

 

Dr. Adler, Dr. Brewster, Dr. Koven, and Ms. Zimmerman refuse to settle for medicine’s isolation and thus turn to storytelling as the necessary solution. For each, their return to storytelling is as radical as it is natural.

Seeing Stories: A Profile of Bradley Lewis

Bradley Lewis - psychiatrist, philosopher, and professor - has spent his career in the classroom and clinic attending to stories of health and illness. Two years ago, Brad’s lifelong inquiry into the crucial dimension of story in illness experience took an unforeseen turn. He entered the medical system as a patient when his eyesight began to fail, gradually but persistently, which led to a diagnosis of cataracts.

As Brad’s eyesight worsened, he grappled with the distinction between being viewed by society as able-bodied or as disabled. When he could no longer see the slides in faculty meetings, or see his students as well in the classroom, or read materials as quickly for committee meetings, he better saw how “unsympathetic the normative world can be” to the loss of functions we often take for granted. “It’s a big deal to have to navigate that.”

Brad trained in psychiatry in the early 1980’s, but felt dissatisfied with the field’s heavy emphasis on biology over biography. At the time, psychiatry was transitioning from a psychoanalytic perspective to a biological one. He recalls feeling “like they both had something valuable to say, but the two messages weren’t integrated at all...it left us to put it together as best we could.” So he started taking classes in the philosophy department to explore the mind/body connection. As he became more involved in the arts, humanities, and cultural studies, he realized that psychiatry was under-emphasizing what really matters to people when they’re going through difficult times: story.

Brad completed his psychiatric training, which he augmented with a Ph.D. in the humanities. He has written and taught extensively on the intersections between medicine and narrative, and believes stories must be prioritized as a crucial dimension of healthcare. Stories are powerful tools that can aid in healing because “stories are beyond right or wrong. They’re metaphorical.”

Soon after receiving his cataracts diagnosis, Brad opted for surgery. This surprised him, for he tends to challenge the common impulse to adopt a highly medicalized approach. In both academic and clinical settings, Brad encourages individuals to ask: “What kinds of alternative ways to telling this story might there be? What languages make sense to you?” He believes “it’s okay if we combine languages - spiritual with biological, for example. There are all kinds of stories that we can bring together to make sense of not only the past, but the future.”

In his own case, the disease model that involved seeking an immediate, surgical solution to the problem felt appropriate to him. However, he still strongly feels that “if someone doesn’t like using disease models and metaphors, that’s fine. There are lots of other models and metaphors. And if someone finds disease models and metaphors helpful, that’s okay, too.”

For clinicians working with their patients, “it’s about meeting the patient where they are, offering them language and support that best serves the healing they have to do.” Although he adopted the disease model language and approach in his own case, Brad still felt at odds with his care providers. “The doctor I finally found really just treated me like a machine. She couldn’t relate to me as a person at all, even though I guess she was one of the best.”

Like so many patients, Brad felt apprehensive entering the medical system “because a lot of people are trying to make a buck out of it. They want to sell you more than you need. And any kind of rating system is hard to make sense of. They are biased towards values that I don’t particularly share. I had to do a lot of work to find someone I thought could have a conversation with me.” And he knows, from his scholarship and clinical practice, how imperative it is for a patient to work with a caregiver who can engage with their situation as a story.

Brad has written extensively about narrative medicine, a field that examines how to be sensitive and attentive to stories in healthcare. He sees story as functioning in multiple ways: “Narrative takes a whole bunch of things that don’t seem to fit together - like our body, our illnesses, our dreams, our childhood, religion and spirituality, culture - and allows us to tell stories that bring all those variables together. Story seems to be central in helping people understand themselves in time and to put their life in perspective with a variety of different variables that are influencing them.”

Brad believes that “the practice of collaboratively telling stories in the clinical setting empowers both people in the room - clinician and patient - to begin to weave those possibilities together in a way that makes sense to them.” But the stories he brought to the providers he met with about his cataracts were not well received.

Near-sighted all of his life, Brad thought he might want to correct for near-vision. When he proposed this idea, it “befuddled” his doctor and the team because it meant he would still need to wear glasses. They shut down his request to explore this possible unfolding of his story, which caused him to once again feel outside the norm and isolated.

“So then I had to get support from friends...people who had personal experience and could help me navigate it and keep me company so I wouldn’t be all by myself with the clinical team that was so sure of itself.” Brad strongly recommends others follow suit by seeking support from alternative sources. “A lot of people who are dealing with the healthcare system need friends with them in the process. Bring comrades who’ve been through it too.”

Ultimately, the surgery was successful, and Brad accrued insights into the patient experience he hadn’t before been able to grasp so intimately. “Your personal experience matters. You’re not just a machine. You have preferences. You have to grieve for different things. You have different values about what you want. Medical decisions are personal decisions, they’re not just medical decisions, not something you can read off a medical protocol. Each person has different angles about what they care about and how they want to approach it.”

More about Brad Lewis:

Bradley Lewis MD, PhD is associate professor at New York University’s Gallatin School of Individualized Study. He has affiliated appointments in the Department of Social and Cultural Analysis and the Department of Psychiatry. Brad writes and teaches at the interface of medicine, psychiatry, humanities, and cultural/disability studies. He is an associate editor for the Journal of Medical Humanities and his recent books are Narrative Psychiatry: How Stories Shape Clinical Practice and Depression: Integrating Science, Culture, and Humanities. His current research is devoted to the ways art, politics, and spirituality impact human flowering.

More about Annie Robinson:

I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.

I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.

I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com.

The Magic Words

Years ago I had a positive experience with a remarkable Nurse Practitioner at UCLA named Sherry Goldman who was in charge of a special program for breast cancer, a disease of which I had. I was struggling with the terrible side effects of my treatments. They were getting the best of my mind, and my body.  When I walked into her office for my appointment, she did the physical examination but she also asked me how I was feeling and remarkably she waited for the answer.  I was open and honest with every detail.  She validated my feelings and made me feel less alone with my thoughts. Her medical suggestion to improve my status was to take walks every day. “Start small, short distances, a block or two and then make it longer with each day”, she suggested.

My response to her was a resounding  “NO!  I don’t want to. I don’t feel well, I don’t look good, and I don’t have the energy.”

Well, the Nurse Practitioner sat quietly for a moment, absorbing my adamant stance and then said to me those magic words, the words that only one could say if they had taken the time to really listen, while having the keen observational skills to sense what the problem was with a simple walk. What were her words? I know you’re waiting for them. Her words were, “ Then don’t walk for you Marla, walk for ME... and I want to hear how much you’ve walked when you come back to see me in two weeks.”

Suddenly my eyes lit up, my back straightened and a fire was in my belly and it wasn’t acid indigestion. That day I went home and started to walk and with each day I walked more and more, longer and further.  Soon, I was walking for hours daily, chomping at the bit to report back to Sherry with pride at my accomplishment. Two weeks later I did just that at my next appointment at UCLA, when I saw her.  I looked like a new person, and I was.

There is a belief that one shouldn’t do things just to please someone else but rather to do it to please oneself. Well, that is all well and good some of the time but there are other times when it’s imperative to break that rule. If pleasing someone else is the key to getting a person back on track and healthy again then so be it and that’s exactly what happened with me.  Not only did my health and strength improve, but I also took up jogging and now I walk and run FOR ME! and I have not stopped since. I’m entering my first 5K Marathon in March.  I have not had that kind of positive experience with the medical profession since, but I will NEVER forget what that incredibly smart and talented Nurse Practitioner did for me. NEVER!

Reframing The Clinical Encounter: Chief Concerns

Dr. Rita Charon, founder of Narrative Medicine, cares deeply about how patients’ stories are told. She believes there are two ways healthcare providers can tell the stories of their patients: with data derived from test results and quantifiable statistics, or with deep understanding of that patient’s experience, derived from generous listening.

Rita observes: “I’m sure many patients have the experience of that first kind of storytelling: ‘They don’t care who I am, they just care what my A1C is.’ But then in the very same place, there’s this other kind, where (a healthcare provider) is not only able to but is rewarded for really coming to understand how to listen to the deeply personal, affective, emotional aspects of not just living, being sick, and of dying.”

But how can providers incorporate this second kind of storytelling into their daily medical practices? Ronald Schleifer and Jerry B. Vannatta, co-authors of The Chief Concern of Medicine: The Integration of the Medical Humanities and Narrative Knowledge into Medical Practices, offer accessible suggestions for clinicians who want to prioritize their patient’s story in their caregiving.

Changes in how providers offer and patients receive care can start with simple but significant technical aspects of storytelling in healthcare: how trainees are taught to write. Usually, hospital notes begin with a patient’s “Chief Complaint”: “My asthma is back” or “I have chest pain” or “I fell and hurt my back.” Schleifer and Vannatta recommend in their book that in addition to a “Chief Complaint”, providers also ask for their patient’s “Chief Concern” - which is markedly different.

This year, for the first time, Rita asked the four medical students she mentored to do just that, and was pleased to see that they took the task of registering a chief concern very seriously. Even at this quite technical level, it is clear “how much it matters how these young kids - 2nd year medical students - are learning how to tell stories.”

The contrasts evident between the complaint and the concern in the examples Rita’s students recorded struck me as nothing short of poetic:

Chief complaint: “Belly pain.”
Chief concern: “I hope my cancer’s not back.” 

Chief complaint: “Relapse of pancreatic cancer.”
Chief concern: “Is it now that I’m going to die?

Chief complaint: “Shortness of breath.”
Chief concern: “Suffocation.”

Chief complaint: “Shortness of breath.”
Chief concern: “I really don’t want to be in the hospital again.”

Chief complaint: “Transfer from the coronary care unit.”
Chief concern: “I don’t understand what has happened to me.”

Chief complaint: “I was not making any sense and was confused.”
Chief concern: “I want to take care of my grandchildren.”

It deeply impresses me how easy yet meaningful it is to inquire about a patient’s chief concern. It opens up the possibility of a different degree of trust between patient and provider. But just what should students do when they hear their patient’s chief concern?

“Tune in!” Rita declared. “Notice the lived experiences and implications of an illness serious enough to get put in the hospital. And because we (ask about the chief concern) right up at the front, (providers) are able - maybe - to pay attention to the deep existential fears.”

Rita feels real optimism about this technique: “It’s not like the doctors don’t want to do this, it’s just that they’ve never been asked to...” or shown how, until now, through narrative medicine training.

Narrative medicine cultivates the development of foresight, the ability to tune in and pay attention. As evident in Rita’s stories about generous listening and asking patients about their chief concern, it’s sometimes the seemingly small gestures that can make all the difference in how clinicians hear, and care, and practice being with.

But it’s important to remember that caring for patients’ stories isn’t easy. Rita acknowledged the challenge in what she asks her medical students to do: “It’s not just: ‘Oh yeah, don’t forget, get the patient’s story…’” It’s about more than just “getting the story”. It’s about “rolling up your sleeves, and getting yourself in a position of confronting the situation’ the patient lives.” Even Rita admits: “There are a lot of things I learn that I wish I didn’t know.”

I imagine how overwhelmed caregivers must feel when confronting the unsanitized, scary, disheartening reality their patients live. But increasingly, providers are discovering that to bear witness to a patient’s whole story, they can better understand and thereby meet their patient’s needs.

Rita says, when it comes down to it, “You don’t need somebody who’s going to put their hands in front of their face and say ‘Don’t tell me about that...’ You don’t need that. You need someone who will appreciate the magnitude of what you’re talking about. And who can then maybe do something on your behalf.”

We all need our magnitudes to be acknowledged and honored, because we are not only conglomerations of numerical data, we are people with complicated, unique, and profound stories.

More about Rita:

Rita Charon, MD, PhD, is Professor of Clinical Medicine and Executive Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. She directs the Humanities and Medicine curriculum for P&S and teaches literature, narrative ethics, and medical interviewing. She also has a primary care practice at Presbyterian Hospital.

TEDxAtlanta Talk: https://www.youtube.com/watch?v=24kHX2HtU3o

More about Annie Robinson:

I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.

I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.

I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com.

Rita Charon: Teaching Doctors to Listen

Dr. Rita Charon, founder of Narrative Medicine, is concerned with how medical students are being taught to write about their patients. “Patients have ideas about how their stories get boiled down into abbreviations and numbers and acronyms. A 78-year-old grandmother becomes a ‘diabetic with an A1C of 11.2.’”

As an internist who also mentors medical students at the Columbia College of Physicians and Surgeons, Rita coined the term “narrative medicine” and launched the Program in Narrative Medicine at Columbia University in 2000. Her goal is to help healthcare professionals improve communication and collaboration with their patients, and to bridge the gap between the humanities and the sciences. At the heart of her mission lies the belief that effective healthcare “requires the ability to recognize, absorb, interpret, be moved by, and act on the stories of illness.” Her definitive book Narrative Medicine: Honoring the Stories of Illness has changed the course of uncountable lives, and steers the narrative medicine movement.

I first encountered Rita at my orientation to the Narrative Medicine master’s program in 2011. She emanated a quiet tenderness as she stepped gently up to the microphone - but soon into her speech she burst forth with impassioned exclamations, rallying the troop of incoming students to her cause to bring together the worlds of healthcare and literary scholarship. As deeply attentive as she is demonstrably passionate, Rita never fails to make an impression. Stories organically unfold when she speaks, on any subject.

When we conversed recently, she told me a story that illustrated exactly what narrative medicine is trying to do. This past spring, four second-year medical students were placed under Rita’s tutelage. She met with them twice a week for over two hours at a time, observed them interviewing patients and doing physical exams, and carefully read what they wrote about their patients. At the beginning of the semester, they shared with her the first formal written notes for the medical charts of a patient of theirs. One student submitted a summary of a young male patient with HIV, Hepatitis C, and a life-threatening combination of diseases on the AIDS ward - but how he wrote it dismayed Rita:

“The first five lines of what he wrote was written almost entirely in abbreviation, with a lot of numbers and percentages. There were barely any words. And this was the opening introduction for anyone who was going to take part in the care of this gentleman, this was the introduction to this gentleman’s situation! I got really upset, because the student was being taught - and expected - to write in this telegraphic, reduced, non-linguistic way.”

Rita chuckled as she shared with me the “slightly snarky” comment she offered him in response: “It’s a good idea to get in the habit of introducing a description of a patient with some English.” To her surprise and delight, he really took her suggestion to heart.

Several days after offering that comment to the student, she observed him performing a physical exam and interview with a new patient. The patient was a young man with a serious infection and a new cancer, who had previously had initial success with an earlier cancer treatment. But now, he and all the doctors knew that there was nothing more than palliative care to offer him at this point: the cancer could not be reversed or treated.

Rita recounted: “So I’m just sitting, watching. The student invited the patient to tell why he had come to the hospital, what the situation was, and then the patient, very honestly, graphically, without holding back, told the student and me what he was going through in his dying.”

“He told us about the life he had lived, which had caused his illness. He told us about his heroin use. He told us about his alcoholism. He told us about his promiscuity. He told us about his violent past. He told us about his regrets, for some of the ways he had lived part of his life. He was very, very frank. He said, ‘At this point, as I face my dying, I want to do as much as I can to give back.’

“And this student was so humble, and respectful. The only thing he did as a listener was to remain in the conversation as an active participant. He didn’t just sit by passively and let the patient tell whatever he wanted. He was engaged as a listener - he knew how to signal that he was actively listening. Every now and then he would kind of ask a question, to signal that he was actively listening. It was extraordinary. And this was the student who had written those technospeak sentences two days before!”

When Rita and the student spoke afterwards, it became apparent that the significance of the encounter really resonated with him. “He realized exactly what that patient had given up. He was as moved as was I to hear this open, honest, generous ‘Here’s what it’s like to be dying...’ Isn’t that something?” Rita and her student were both left in awe of the “remarkable, generous donation” the patient offered by entrusting them with his story.

As the student sat at the bedside of the 45-year-old dying with a belly full of cancer, receiving the man’s stories, he gave the patient the opportunity to give something back. At the end of the visit, the dying man said: “I appreciate the opportunity to impart some of what I’ve learned.” Rita witnessed how being given the chance to tell his stories “added some dignity to his life. He was able to give this young, inexperienced medical student some idea of what it’s like to be dying.”

Sometimes the seemingly subtle acts of witnessing and sharing story are the most powerful treatments, for both the patient and the physician.

More about Rita Charon:

Rita Charon, MD, PhD, is Professor of Clinical Medicine and Executive Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. She directs the Humanities and Medicine curriculum for P&S and teaches literature, narrative ethics, and medical interviewing. She also has a primary care practice at Presbyterian Hospital.

TEDxAtlanta Talk: https://www.youtube.com/watch?v=24kHX2HtU3o

More about Annie Robinson:

I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.

I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.

I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com

Harnessing The Healing Power of Stories: Dr. Annie Brewster at TEDx "Grit"

In April 2014 Dr. Annie Brewster, Founder and Executive Director of Health Story Collaborative attended the TEDx Fenway event "GRIT" which sought to honor individuals who had the GRIT to persevere and realize their aspirations. 

Dr. Brewster presented her own TEDx talk, "Harnessing The Healing Power of Stories" which appeals to medical professionals to take time to truly listen to their patients and acknowledge the most essential element of healing: the stories of peoples' lives.

Reflections Of A Harvard Undergraduate Premedical Student

Sometimes it feels as if the path to becoming a practicing physician is a path of deferral. As a premedical student and sophomore in college, I have seen my peers engage in a variety of activities that are required for medical school but are not directly applicable to life as a physician. My colleagues have reviewed physics for the MCAT (Medical College Admissions Test), studied the nuances of organic chemistry, and adopted leadership roles by managing large organizations and events.

As a premedical student myself, I am often tempted to think of life as a physician as the final attainment of a routine that matters. Finally, instead of focusing on how to fulfill particular requirements and prepare for a standardized examination, a physician can find treatments for patients and help make scientific breakthroughs. Instead of being attuned to the competitive nature of an application process, a physician is able to reflect on how to best relate to their patients with care and empathy and how to best work with other members of their health care team.

However, when I ask physicians for advice or insight, they often describe how the practice of medicine is not as ideal as premedical students might project it to be, and has its challenges just as the premedical experience has challenges. For instance, an emphasis on efficiency makes it difficult for physicians and other health care professionals to adequately spend time listening to their patients. The commercialization of the medical field can also make work difficult, and even disillusioning, for physicians.

Understanding these realities provides a new perspective for premedical students: an awareness that the practice of medicine is imperfect. Students should expect to be faced with imperfections, such as timing constraints and a frustrating inability to listen fully to patients, during their later years as a physician. Armed with this knowledge and perspective, premedical students know more about what they can expect, and perhaps even change, in the field of medicine.

They can also face the path to medical school with a fresh perspective. Because I have realized that the practice of medicine, like the premedical experience, contains elements that do not directly relate to becoming a better physician, I am less frustrated by the process. Instead, I am more focused on how to make my premedical experience translate into a learning experience that will help me become a more engaged physician.

More deeply, health care professionals' efforts to fill in the gaps of modern medical practice inspire me and resonate with my idealistic impulse to contribute to the medical field. I hope to be involved with medicine because I hope to help others restore their health, whether they are struggling physically, emotionally, or spiritually. Although a major component of doing this as a physician is of course providing medicine, I am also interested in less traditional ways that health care providers can facilitate emotional healing.

Health Story Collaborative is one such example. By providing a space for patients to share their stories with others, Health Story Collaborative creates a sense of community. Patients who are hesitant or unable to leave their homes to attend a support group can still participate. Moreover, some patients may prefer the opportunity for privacy while bringing up uncomfortable or distressing topics with others. Health Story Collaborative also provides more opportunity than a support group for less spontaneous conversation that can more accurately reflect the nuances of a patient's experience. Patients spend time discussing and crafting their narrative with a physician, and the final written or audio transcript can capture more of their experience than quickly delivered thoughts.

Efforts such as Health Story Collaborative provide patients with emotional comfort, and also broaden the practice of medicine. By facilitating such efforts, physicians can do more for their patients and feel less constrained by the medical field's commercialization and haste. They can more deeply understand the patient experience, and become more empathetic and better prepared to provide advice that is relevant to specific challenges that patients face. This inspires me as a premedical student and indicates that the practice of medicine is more meaningful and more involved than I could have expected.