My Unraveling

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Let’s begin with an action scene: I was in midair, tumbling sideways, heading for the floor of the Columbus Circle subway station. Not a place I wanted to be. Where I wanted to be was on the downtown 1, five or ten yards away, doors standing open. I’d made this connection more than a thousand times, though usually getting off the 1, not on it.

This time, I was out of practice and I got it wrong. After stepping off the downtown B or C, I took the wrong stairway and had to double back to get over to the right side of the 1. When I climbed up the correct stairs, the stairs I used to fly down every morning, straight from the optimal train door on my precisely plotted commute, I saw the 1 arriving.

And then — well, if I knew exactly what happened, it wouldn’t have happened, would it? What I registered went like this: I sped up, or I meant to speed up. Someone cut across my path. I tried to steer around them and my legs … my legs did something else. Or did nothing. The extra walking and climbing had taken too much effort, and my intentions lost contact with my legs. I reached out and tried to brace myself on someone’s shoulder; they were wearing a black-on-white shirt; I was so undone I was trying to make physical contact with a total stranger on the subway platform. I missed. All that was left was to hit the station floor, so I did.

I rolled to my knees and discovered that was as far as I could make it. My legs couldn’t get me upright again. One guy streaming by broke stride, asked if I was okay, and hauled me to my feet. I checked myself: no torn clothes, no blood. Another 1 was pulling in, one minute behind the train I’d missed. I got on and went where I’d been going. I had just had a fall.

Old people have falls. I had only just turned 52 one week before the September evening I collapsed. But the year from 51 to 52 had been a remarkably bad one. I gambled on a job I wanted, as the editor-in-chief of a small magazine, and it ran out of funding. I sent applications to other publications and got thoughtful rejections. I sent more applications, and they went unanswered. I made an appeal for paid subscriptions at a newsletter I’d been writing. Its revenue flattened out at about 20 percent of my share of our living expenses. The household finances began to drain.

I picked up an adjunct gig, teaching a writing class on Zoom, three straight hours a shot, and the anxiety of filling the time — of giving the students what they were paying for — gathered into a lump in my upper torso until I couldn’t stand the taste of the herbal tea that was supposed to relax me and give me something to do with my hands on-camera. My shoulder locked up. I got pins and needles in my arm.

What was happening to me? I don’t go looking for medical-mystery articles in the newspaper, but when I see one, I read it end to end. The strangest things happen to other people’s bodies! Someone, if I remember right, fought a lingering cough for years because they accidentally inhaled a pea and forgot about it. The medical-mystery column has a beginning and a conclusion. In between is a fumble for clues, moving toward a flash of insight. Some doctor finally runs the right test, recollects the right journal article. The shapeless misery takes shape.

I went to see a shoulder specialist. He knew exactly what was wrong. I had trigger points, little knots in the muscle under the shoulder blade. He gave me some exercises — pin a tennis ball between the shoulder and the wall, lean back, and roll around on it — and a prescription for an anti-inflammatory. A few days later, I noticed my shoes were laced too tight when I tried to put them on. Another day and I made the connection: No, my feet were too big for my shoes. Google said that anti-inflammatories can cause swelling in the extremities, so I stopped taking the pills.

My feet kept swelling, day by day, until my pink ankles looked like deli hams and I started using a butter knife as a shoehorn. I’d reluctantly spent some money to order a new pair of canvas sneakers, off-white, for the spring and summer, and I left them in the box, unable to face the thought of jamming my distended feet into them. The pins and needles spread to both arms, like I’d slept on them funny, except the sensation lasted all day.

I could still type through the numbness, though, publishing what I could for what money I could get. I stopped buying myself things that seemed discretionary — the good oolong tea leaves, crushproof imported pocket notebooks, a new pair of jeans — but some spending had its own momentum. My wife’s family had booked an Airbnb in Italy for April. It would be our first vacation since before the pandemic, our middle-schooler’s first trip abroad since he was in an infant seat. It would have been absurd to cancel just because I was between jobs. My ankle ached on the clutch pedal of the rented Fiat. I brought along a folder of unfinished tax paperwork. The amount I owed the IRS would match, almost exactly, a big freelance check I was waiting on. The deposit went into and out of my account on the same day.

I went to my regular doctor, whom I’d bypassed on the shoulder thing. He was baffled at the symptoms and frank about his bafflement. Swollen feet can mean congestive heart failure, so he referred me to a cardiologist. She instructed me to walk and then run on an inclined treadmill, hopping on and off for ultrasound imaging of my heart. I have — had — always been extremely healthy without being physically fit, so while I didn’t enjoy the test, I still passed handily. My heart was strong and well.

Sometimes this kind of swelling just happens and then goes away, the cardiologist said. Whatever it is, you won’t die of it.

I’ve told the story over and over, to various doctors, till it almost sounds like a coherent narrative. When I drafted this passage, in the dark, by thumb, on a phone plugged into the USB socket of a hospital bed, I’d been telling it to several people a day: general practitioners, neurologists, rheumatologists, radiologists, nurses, physical therapists, medical aides, a dietitian, a surgeon. The story, I told them, happened in two parts. In the spring and summer, part one, I chased the swelling and numbness and other symptoms — stiff fingers, shortness of breath, tightness in the chest — in slow motion from doctor to doctor. Mostly, this was shepherded by the cardiologist, who seemed to feel as if, by ruling the problem not to be her business, she had made it her duty to discover whose business it might in fact be.

I saw a neurologist, who talked me into spending $700 from our high-deductible health plan on getting my muscles zapped with a little Taser and told me the results said I had carpal tunnel. I did have carpal tunnel, but not really, not because my terrible ergonomic habits had caught up with me. The swelling had simply gotten into my carpal tunnels for a while. I ignored his suggestions for exercises and supplements, and months later, in the hospital, I got an email telling me his practice was going out of business.

I saw a rheumatologist. He ordered a bunch of blood tests and suggested I take prednisone and something else. When I opened the paper bag from the pharmacy, I realized the something else was hydroxychloroquine, the malaria drug that had a moment in the news as a spurious COVID treatment. I took only the prednisone. My ankles stayed puffy. You could jab a finger into one and leave a dent that lingered.

Before this, my hands had been loose-skinned and a bit wrinkly, the one part of me going more visibly on ahead through middle age than the rest. My hands looked like my mom’s hands, and I would catch myself gazing at them sometimes and congratulate myself on my resignation to the realities of aging, the mortality of all flesh. Now my fingers resembled Italian sausage links, tight and shiny, with no reassuring philosophical overtones at all.

One symptom would fade and a new one would assert itself. My ankles deflated and I started wearing the new sneakers, but my breathing and stamina steadily worsened. A wheeze or cough would interrupt my talking. On the mile-long walk back from school with my younger son, the route we’d been taking for two years, I lagged behind, guiltily asking him to slow down. I started buying five-pound bags of rice from H Mart instead of ten-pound ones. Then I just started getting rice delivered.

Nobody cracked the puzzle. The folder of referrals and results I carried to appointments got thicker. My blood tested positive for signs of general inflammation and negative for the constellations of markers that would point to any particular inflammatory condition. I had not been bitten by any ticks; I had never gotten the Lyme rash or any other diagnostically meaningful rash. My fingers did not exhibit a telltale sign of turning stark white when they got cold. My chest X-ray and CT scan were clean. The closest thing to a breakthrough was basically an accident: During a routine vitals check, a nurse asked if I was holding my breath. I was sitting still, and my pulse-oximeter reading was refusing to go over 95 percent.

Normal is 95 and above. Below 90 is an emergency. I self-tested at home with a device on my finger. Light activity, like bustling around the kitchen, would knock my level down to 91. Walking a bag of groceries home and up the stairs dropped me to 87. At a medical center, I did breathing exercises with a mouthpiece in a sealed booth. I passed that test. I went to a pulmonologist and passed every test there, too. If you ignored the pulse-ox readings, my lungs and heart were, officially, fine.

There was zero explanation; there was, maybe, the absolutely obvious explanation: that I was stressing myself into this over money. We’d been absorbing plenty of strain in the household before I lost my job — some normal midlife stuff, some normal parent stuff, some abnormal and menacing stuff that I truly can’t even get into. Our black cat gnawed our potted prosperity bamboo to shreds. Trying to save it, we overwatered it until it rotted from the inside out.

It had not been the wisest time to choose an unstable job in a beyond-unstable field. If my time as an editor-in-chief had even been a job: I applied for unemployment, got rejected, and after months of appeal, the State of New York ruled that my past two full-time situations had been contract gigs, uncovered. I considered whether my illness could be a conversion disorder flowing from my misguided career choices. On some level, I believed the swelling would go down and the oxygen would go up as soon as I collected a few consecutive pay stubs from a normal, salaried job.

Back in the winter, I’d met up with a friendly fellow writer who happened to have just secured, through a different line of work, an amount of money that meant financial security forever. In theory, we were talking about ways to fund the job of mine that was about to run out of money, but we both knew that wouldn’t happen. “You’ve got a good reputation,” he said. “Someone will want you to work for them.”

This had been true enough before. I’d made myself a useful editor and a reasonably well-known writer over the years. I moved between jobs without much trouble, tending to get hired the way murderers in movies get hired: a message or phone call from someone who needed something done and who thought I could do it. Abruptly, all that my connections could offer were gigs. Someone needed a manuscript edited before they gave it to their book editor. A magazine wanted a book review. Work, but no jobs.

I kept applying for something stable. A notoriously lavish start-up loved my proposal for a mini-section within its soon-to-be-launched vertical until the sponsorship for the vertical failed to come through. A major media company advertised for a position that exactly fit my history, then withdrew the listing in the middle of an executive meltdown. A friend of a friend let me know that another major media company was ignoring my application because it wanted someone less opinionated. I started calling in favors, nagging people with whom my friendships had previously been non-transactional. It broke up the dead silence, at least.

My wife and I considered disaster scenarios in which the “disaster” was simply that things kept going the way they were going. We did the math on vacating our condo, finding tenants, and living in a cheaper rental. Maybe it was time to leave New York. But it wasn’t clear if we had enough savings to cover such a move. It wasn’t even clear if I had the physical energy to pack boxes. On the online job forms, there was usually a question about whether I, the applicant, identified as disabled. I paused longer and longer each time. Disabled? I was … less able. To do things. Than I’d been. For now? I clicked “no,” uncertainly.

Part two of the story is I got COVID. I’d avoided it for three years, but everyone is going to contract the virus sooner or later. It’s not worth the trouble, officially, to even politely suggest people should wear masks or to keep the public up to date on the rate of new cases. The pandemic is over, people keep on saying. You are free to make your own decisions about what risks to take individually without any useful information about the overall risk picture.

I’d been furious about this already on other people’s behalf. Most Americans, the Biden administration said, would be fine if they were vaccinated. This elided the people who wouldn’t be: the immunocompromised, for example, and those with certain respiratory conditions. The political and journalistic consensus had set the value of these people’s safety at zero, not even granting them the benefit of mask advisories or ventilation standards.

When I started hearing about the late-summer COVID wave, it occurred to me that now I was one of those people myself. This is what disability advocates have said all along, not that it usually sinks in: The able and the disabled aren’t two different kinds of people but the same people at different times. Last year, I was healthy; this year, I had a breathing ailment, even if nobody could say exactly what that ailment was.

I got Paxlovid delivered and sank into fever. The back of my throat was so raw I would wake up snorting for air. Rolling around in my bed, I felt, for the first time, that this body of mine truly was going to die someday. Not the abstract knowledge that death awaits all of us but the shocking awareness that eventually this system of veins and nerves and organs would lose its familiar stubborn equilibrium, cease functioning, and fail. I fixated on whales. They’re right out in New York Harbor. What if I used up my allotted time on the planet without ever laying eyes on a whale? I booked a whale-watching cruise for the family. Later, when the day came, it got canceled by a hurricane.

In August, when the acute COVID infection ran its course, I got out of bed and back on my feet. But after a week or two on the upswing, a whole new set of malfunctions took over. Routine movements burned as if I were doing deep stretching. I couldn’t get through a meal without a coughing fit from a lump of food getting stuck or a drink of water splashing the wrong way. Saliva accumulated in my mouth till I had to go to the sink and spit. I ate more slowly and stopped getting seconds, feeling like I was in one of those testimonials about the new anti-obesity drugs, in which people tell how their motivation to keep eating has disappeared. I was far past needing or wanting any weight loss. My sedentary midlife flab had long since ebbed away, and now I was losing something else, down ten pounds in a month. Maybe, the cardiologist said, eyeing my scrawny limbs and loose clothes, I should consider checking into a hospital. Just so I could get all my testing coordinated in one place.

It was only a thought, one that dissipated as I sought out second opinions. The medical-mystery column doesn’t usually dwell on how slowly the inquiry goes in our fractured health-care system. How the highly recommended pulmonologist doesn’t return the first phone call and only has an opening five months away, and how the major-medical center does have an appointment but isn’t in network with the major-medical insurer. How the chest X-ray is over by the East River and the breathing booth is in the West 160s and the phlebotomist is by Columbia, and how each one has its own online portal for billing and results.

Every day, my legs were harder to move. Climbing in the door of an SUV, I couldn’t lift my rear foot over the threshold until I reached down with my hands and pulled it in. Then the grab-and-lift maneuver became necessary to step into my pants. I had to ask the kids to pull pots and cutting boards out of the bottom kitchen cabinets for me. I gave up bedtime-story duty, crawling into bed each night before anyone else, half-hearing my wife’s voice reading in the next room, feeling myself fading out of my own life. I imagined living in a world and a class where a person could retreat to a sanatorium and shut everything down until the problem was figured out.

I stopped leaving the apartment. The project of washing left me needing to lie down. One morning, or possibly afternoon, it took me four or five tries to shrug my way into my bathrobe, nearly overcome by the weight and friction. I gave up on shaving, and the rattiest stubble of my life took over my chin. The kids were put in charge of the cat box because I couldn’t reach that corner of the bathroom anymore, but one night I got down on the floor to help and when we were done I couldn’t stand up. I didn’t even know how to start to try. Eventually, my wife grabbed me under the armpits from behind and hauled me most of the way upright while I gabbled warnings about my legs giving way.

Two different realities or images stood superimposed in my mind. There was the body I’d occupied two months ago — my body, as I understood it — walking over to Broadway for pizza, taking the younger boy to the basketball courts, ducking into Central Park to climb the Great Hill. And then there was Andrew Wyeth’s Christina’s World, a gaunt figure dragging her useless legs along the ground. If this was histrionic or self-pitying, it seemed less so on the days when I couldn’t raise my hips up off the floor. The only thing that still felt more or less normal was sitting at a desk, doing the work I was trying to get someone to pay me to do.

Meanwhile, in the span of time that it took a newspaper to move one step down its hiring checklist from a Zoom interview to an edit test, a law school in a small southern town progressed from sending my wife a preliminary inquiry to making her a tenured job offer with a part-time teaching slot for me thrown in. We booked a visit for the family to see if we could really live there. As the trip came closer, we realized there was simply no way I could walk through an airport. The rest of the family would have to scout out our possible future while I stayed home.

As they prepared to go, my GP called with the results of my latest bloodwork. A normal range for creatine kinase, a marker of muscle breakdown, might be between 30 and 200 units per liter. A new test said my level was 8,000. The reason my muscles felt so weak was that they were actively dissolving into my bloodstream.

I wrapped up a job-recruiting call, threw my glasses and contact-lens case into a shoulder bag, and booked an Uber to the emergency room. My wife took my sons to see about the job. It was unclear which of us was going to the place that would offer a solution.

In the hospital, the medical mystery falls into an awkward, indeterminate zone. Between the fall and the choking and the creatine kinase, my story qualified me as a definite emergency when I shuffled up to the admission desk. But it was a conundrum to be solved, not as straightforward and urgent as a stroke or broken hip. The staff put me in a wheelchair and parked me in a walkway lined with other people in wheelchairs. The hospital was beyond full. There were genuinely not any open beds, not only as an administrative category but as literal objects to lie down on. I spent my first night on a gurney in the ER observation section, fully dressed and still in my shoes. To avoid catching anything else, I kept a mask on, the elastic digging into my ears.

On the second day, I got a bed and changed into two layers of hospital gowns. My clothes and my new sneakers went into a pair of plastic patient-possession bags. Doctors came by, individually and in teams, with blue gloves on, to test my muscles. Squeeze my fingers. Push up against my hand with your knee. Stick out your elbows and don’t let me push them down. The closer the blue gloves came to the middle of my body, the worse I did.

The doctors had questions. Had I been hiking at all back in the spring, when my troubles started? No? Was I sure? Not even in Central Park? This was about Lyme disease again, of course. I knew about Lyme, and the ever-growing literature of people’s struggles with Lyme, and the whole elusive post-Lyme complex. But I also still knew, as solidly as I could know any fact about my health, that I had not been bitten by any ticks. One doctor after another asked me to blink my eyes, harder, over and over, watching for the lids to droop from fatigue, which might mean myasthenia gravis. My lids did not droop.

ER time took over, with “day” and “night” merely more or less busy spells in an unbroken atmosphere of fluorescent lights and beeping. A 24-hour flight in coach, a 48-hour flight in coach, a 72-hour flight in coach. The patient behind the curtain to my right kept his TV blaring all night, cycling episodes of the same forensic true-crime show: some ghastly rape or murder, the bafflement of investigators, the infallibility of scientific evidence coming to the rescue. The Kars-4-Kids jingle playing in between.

My obvious risks — choking, falling — had standard countermeasures: puréed meals and caution-yellow nonslip socks with a matching wristband that read FALL RISK. For treatment, there was nothing but big bags of IV fluids to flush out the creatine kinase while keeping my underlying symptoms untouched, the better for accurate testing and observation. The creatine kinase went down to 5,000, back up to 6,000, down again. The staff rolled me away to a chest X-ray, a thyroid ultrasound, a contrast CT scan, an MRI. Wheeling down the hall toward an echocardiogram, I passed the neurology team going the other way, misconnecting on a planned meeting. I never talked to them again.

A real hospital room, outside the ER, opened up in the late afternoon on the fourth day, a Saturday. It was on the tenth floor with a window looking uptown over the top of Central Park. I could see the boathouse by the Harlem Meer, but not the water itself, because the trees were so thick and green. I wondered, tempting fate, what it might look like when the colors turned.

My new roommate, a friendly, stooped figure, was in agony for non-mysterious reasons — a manageable condition that had gone unmanaged because the treatments cost too much money. The problem-solving sessions on his side of our shared curtain, with the doctors and social workers, were about which programs or policies might help him if he and his family could sort them out.

For me, evidence and theories kept trickling in. Doctors would come by and mention some finding, or my phone would give an automated notice that a new lab result had arrived and I would Google as best I could. Open tabs accumulated on my phone: RNP antibodies, rheumatoid arthritis, polymyositis, mixed connective tissue disease. (“The overall ten-year survival rate is about 80 percent.”) I was negative for hepatitises B and C, negative for Sjögren’s-syndrome antibodies, negative for syphilis, negative for Lyme (told you) — negative for most things, as I’d been all along. The speed with which my muscles were falling apart seemed to be, in some sense, good news, meaning that I probably wasn’t going through one of the more gradual neurological degenerations like ALS.

Down in radiology, I took a swallowing test, a three-course flight of barium snacks: a thick barium drink, spoonfuls of barium marshmallow fluff, then bites of the barium fluff on a graham cracker, consumed one after another on live X-ray video. There was my jaw, my tongue, my hyoid bone, and there were clots of barium-tinged food getting visibly hung up short of the esophagus, behind the tongue, in little pockets of underperforming pharyngeal muscle. None of the food, however, was obstructing my windpipe. It meant I was eligible to trade in puréed green beans for individual green beans, French-toast paste for ordinary French toast.

A provisional unifying idea took shape. More and more, the conversations circled back to one form or another of myositis: an autoimmune attack on my proximal muscles. If the muscles were the essence of the problem, then my oxygen troubles could have been a muscle problem all along too, a creeping weakness in the diaphragm. The swallowing trouble would be the muscle problem appearing in the pharynx. The swollen ankles and knuckles — well, those weren’t quite muscle problems, but they also were no longer a pressing concern. What I needed, urgently, was a muscle biopsy, one that might tell the doctors exactly how that part of me was going wrong.

It was my bad luck, the attending doctor said at my bedside, to be an interesting case. Our meetings had a tone of rueful amusement. Yes, I was in pain and reeking from infrequent showering, but we could talk about the unresolved mystery and its submysteries with a certain detachment. My oxygen levels were behaving themselves. No one knew where that problem had gone, nor why my voice had suddenly gone faint and reedy.

My wife was back from the job-scouting trip, but she’d picked up a foot infection and was stuck in the apartment, taking antibiotics. The boys trooped across the park to bring me my laptop. They were visibly alarmed by how gaunt and shaky I was. I took them on a shuffling tour to a long back hallway lined with sleek, derelict equipment, with a window facing out on a black monolith of a building, to show them how much it looked like Andor. We shared the crunchy, startlingly good French fries on my dinner tray. I couldn’t have swallowed that many on my own.

Now that I had the computer, I rummaged through test results and image scans on the hospital information portal. I could navigate this way and that through the inside of my own body on the CT or MRI files, moving the cutaway to watch the stark white rib cage flow into the spine. My thoracic aorta was “normal in caliber and course.” My right iliac bone had a “tiny sclerotic focus” that was probably a “bone island.” My muscles were all fucked up:

Diffuse STIR hyperintense signal throughout the visualized musculature of the pelvis and thighs as well as partially visualized portions of the paraspinal muscles of the lower back, including the quadriceps muscle (vastus lateralis, medialis, intermedius), hamstrings, iliacus, psoas major, gluteus medius and minimus, pubococcygeal muscles, adductor muscles, highly suggestive of systemic myositis in the appropriate clinical setting.

I knew this, implicitly. It was apparent every time a nurse or technician asked me to scoot a little in my bed and my psoas major or adductor or the rest simply wouldn’t do the scooting. The most minimal movements were the most impossible. It was easier to clamber out of bed, take a six-inch step, and clamber back in at the new spot than to shift my body. If my pillow slipped down to the small of my back, there was no retrieving it.

A perverse rule of medical technology is the more you scan, the more you discover, whether those discoveries matter or not. The imaging reports noted a “small hiatal hernia”: Google said a weakened diaphragm could cause that. I had an “underdistended stomach,” as would anyone who was expected to eat French-toast paste. My liver was “prominent in size,” which qualified as “hepatomegaly.” My lower lungs had “minimal mild reticular opacities.”

One discovery was notable, or might have been. A night-shift doctor brought it up offhandedly, as if someone else must have already mentioned it: The ultrasound had picked up a nodule on my thyroid. Could it be squeezing my trachea? Could it be cancer? Could it be nothing? Sure. A little more inspection and the nodule became nodules, plural, the largest being a nearly inch-long sausage on the thyroid isthmus, salient and crying out for analysis. The thyroid-biopsy team swooped in during lunchtime, chatty and armed with portable gear for working at my bedside. One person tracked down the sausage with an ultrasound wand against my neck while another jackhammered away at it with a tiny needle. They prepared the samples in little vessels of brightly colored liquids laid out in the sun on the windowsill. The technicians eyeballed the cells on a microscope set up in the hallway and declared that nothing looked obviously malignant. My thyroid itself, they said, showed “lymphocytic thyroiditis.” Also known as Hashimoto’s disease, although who could say, here, whether it was a disease unto itself or a manifestation of some greater disease. The question was bigger than the thyroid.

Now there was almost nothing left to do but the muscle biopsy. Ten stories up turned out to be cruising altitude for hawks, wheeling by the window in the sunlight, borne along on the fresh autumn breezes. I gave my daily samples of blood. I sent some follow-up emails about jobs. The procedure was scheduled for Thursday, my ninth day in the hospital, in the last slot of the afternoon.

As the time came closer, I began to apprehend an uncomfortable truth. The actual medical mystery wasn’t about anything inside me. It was whether the tests were going to point to some far side of this where I got my life back. Was there a future where I could walk out the door on Sunday morning in decent shoes and make it to church? Where I could pick up heavy groceries to put a three-course meal on the family dinner table? Where we could rent a rowboat? Where I was a helpful and economically viable member of the household?

The operating team drew a mark on my right thigh and put me under sedation. When I came around, I was still in the operating room. My wound was neatly sewn up but the team was on the phone with the pathologists, who wanted to discuss whether they’d taken a big enough chunk of my leg. Pleasantly high and feeling fantastic, I assured everyone it was fine if they wanted to go back and get more. You know — While we’re here, happy to oblige. They decided against it, and off I went to recovery. It was the nicest feeling I’d had in weeks. I looked at my hands and I could believe the old familiar wrinkles were coming back.

Later on, it felt as if someone had sliced open my thigh, since they had — an additional stabbing pain tucked inside the usual burning pain when I used my quadriceps. But that was tolerable. I was finished with being a test subject. All the possible diagnoses pointed to the same treatment, anyway, so the next morning, I got a syringe of steroids pushed into my IV, chased with a cold squirt of saline to make sure every drop went through. I was a patient, trying to get well. Within hours, maybe, my thigh muscles seemed a little less dead than before. That afternoon, I limped off to the bathroom, pulled the shower chair out of the shower, and sat down to make a job interview call, away from any beeping machines or doctor visits. At least it wasn’t a Zoom.

Out the window, I could see magenta and gold in the tree canopy of Central Park. It was deep enough into October for that now. My creatine kinase dropped from 6,200 to 4,500 overnight, then headed for the 3,000s, a level a person could go home with. Whatever had made my immune system start tearing up my muscles, the steroids seemed to be making it slow down. That’s what they were: immunosuppressive drugs, to be followed over time by other, different immunosuppressives. If all went well, I would trade being an actively sick person for being an immunocompromised one.

The blue-gloved muscle checks resumed. Oh, yes: Much stronger in the legs. I took a lap around the ward. I spent less time in bed and more in a chair. I booked another job call with maybe some steroids-laced overconfidence. My wife, with a counteroffer from her current employer in hand, turned down the southern school.

Normal life, or whatever would stand in for normal, was calling. On my 15th day, with the pathology report on my leg sample still a work in progress, the last sparkling dregs of a fat bottle of immunoglobulin filtered into my veins. The two-day infusion was the final piece of treatment that had required hospital care. I was free to go. When the IV came out of my arm, I dug out my things from the closet and got dressed. Clean pants and a clean T-shirt over my poorly cleaned body. My eyes in the mirror were sunken, my neck withered. Nonstop mask wearing had scraped the bridge of my nose raw, and my ratty stubble was now a full ratty Vandyke, the chin shot through with gray. I peeled off my last pair of grimy yellow nonslip socks and wrestled my way into my own regular socks.

Now the shoes. I’d been imagining how this would feel for days. I reached into the hospital bag for my canvas sneakers and pulled them out. They were mashed out of shape and … damp to the touch? Damp to the touch. Had something spilled into the bag, somehow, or was it just residual sweat? Either way, they had been sealed in plastic with it for two weeks. Flecks of mold had sprung up on the otherwise new-looking insoles.

There was nothing to do but wear them. I would be taking myself home. The hospital had sent my prescriptions to the nearest pharmacy for me to pick up on my way out. A string of robocalls and human calls then informed me that the branch did not, in fact, have all the meds I needed, specifically the steroids. My wife headed across town to another location, where the computer indicated there were enough steroid pills to last me three days.

The nurse who’d unplugged me reappeared with a sheaf of papers: I was discharged. No final consultation with any of the doctors. The nurse asked if I wanted a wheelchair. I figured I might as well start walking.

By the time I reached the ground floor of the hospital with my bags, I understood that had been a mistake. My room had been on the west side of the building; the pharmacy was on the east, an entire avenue over. I walked a few yards down the vast hallway, paused for a stricken moment, then walked a few more. I couldn’t wipe out again. Stopping and going, I made it to the east side of the building, down a short flight of steps, and out. Numbly, I trudged up the sidewalk in the quickly fading twilight, clutching my papers. It dawned on me that I still didn’t have a diagnosis.

I despise those stories where a writer tells you all about some mystery for thousands of words and then fails to deliver the solution. Usually with some metaphysical vamping about the unknowability of all things. What are you even telling anyone about it for? But I didn’t have an answer, and I still don’t. It would be more than another week before the pathology report came back. My muscles, it said, showed “myopathy with scattered necrotic myofibers in the absence of significant lymphocytic inflammatory infiltrates.” I couldn’t raise a doctor on the phone to talk about it. Whoever wrote the report had floated a whole new possibility, “antisynthetase syndrome,” to go with the other possibilities still bobbing around. The hospital rheumatologists, weeks later, would stick with polymyositis; a different myositis expert would propose “immune-mediated necrotizing myopathy.” A neurologist would suggest “lupus-myositis overlap syndrome.”

Medicine hasn’t really solved for the body attacking itself. Since the inflammation first brought me to the rheumatologist months before, I’d been quietly bracing for an answer that wouldn’t feel like an answer. An authoritative-sounding name like scleroderma would come up, and Googling would fill in non-detail details like “no cure” and “symptoms vary” and “don’t know exactly what causes this process to begin.” The thing that had taken me apart was something rare and diffuse, its effects almost certainly melded with those of the coronavirus. I was on my own with it. I was three weeks behind on a freelance editing gig, and November’s bills were cycling into view. In January, an endocrinologist had an opening to see about my thyroid.

The pharmacy window was, as pharmacy windows are, all the way at the back of the store. An incredible distance. A terrifying distance, alone on my shaky legs. I put out a hand to steady myself against the shelves along the way, and waiting in line I just grabbed on. I said my name to the pharmacist as clearly as my cracked voice could muster, got the pills, and retraced the long path to the door.

It was fully night now. As I stepped outside the pharmacy vestibule, I saw an empty taxi coming up the block, preparing to turn the corner. Memory and instinct said it was mine: Two or three long, quick strides to the curb and a sharply upthrust hand would catch the driver’s eye. My body knew otherwise. I ventured a short step, not even to the middle of the sidewalk, and the taxi went on by my half-raised arm.

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Using Generative AI To Boost Empathy In Medical Students And Medical Doctors

Generative AI comes to aid medical students and medical doctors in being empathetic.

In today’s column, I will be exploring how generative AI enters into a seemingly age-old matter concerning the nature and role of empathy among medical doctors and medical students.

Here’s the backstory.

A general belief is that seasoned physicians and even newbie budding doctors ought to be leaning into being empathetic toward their patients. Medical schools have taken up this mantle and sought to train medical students on the precepts of empathy in hopes of launching them into a career steeped in an embodiment of empathy. A wide range of training methods have been used, including group discussions, individual readings, self-reflection, in-person training exercises, online computer-based simulations such as the use of VR (virtual reality), training films, and the like.

A shiny new tool has ridden into town with quite a bit of gusto and brash bravado.

Turns out that the latest AI, particularly generative AI, can be a catalyst for the empathetic aspirations entailing existing doctors and those soon-to-be newest generation of medical doctors.

The use of generative AI for this specific purpose is still in its infancy. This makes sense since we only have had advanced levels of generative AI for a short while so far. The earlier versions of generative AI were not nearly fluent enough to likely make a substantive difference in the empathy enablement realm. Some prior uses were rickety and regrettably left an adverse impression of what well-devised generative AI can do. For those that might have tried generative AI for this devout purpose in the past, take a deep breath and with a refreshed view, allocate openminded time to do a relook.

Modern-day generative AI is a world of difference and nowadays provides impressive empathy-enabling facets. That being said, the manner and methods of attaining success with these latest large language models (LLMs) are a bit more complicated than might seem at first glance. It is easy to say that generative AI can be an added tool in the empathy enablement process, but numerous twists and turns can muddle or possibly undercut the desired journey. As they say, look before you leap. Do due diligence and make sure that you’ve laid out a suitable path for achieving success when leveraging generative AI as an empathy enablement machination.

I will approach this weighty discussion in the following way. First, I will take a look at the recurring realization that empathy for medical professionals is a vital matter. Research has shown that empathy can make a demonstrative lift in how patients feel about their medical interactions and that by and large quality of care and medical outcomes can be tied to the empathetic quality of their attending physician. That’s why infusing empathetic practices into medical students is a notable yearning. Get them into an empathic mode at the get-go. Hopefully, this will be carried throughout their medical career and be imprinted from the very beginning.

After covering the fundamental basis for having medical doctors embrace empathy, my next focus in this discussion will be on the nature of empathy per se. Some say that empathy cannot be readily defined. You are either empathetic or you are not. It is instinctive. If that were the case, the goal of training empathetic enablement would seem fruitless. An alternative view, and one that I strongly support, is that you can train empathetic enablement and we would be missing a huge opportunity by simply shrugging our shoulders and settling with the notion that someone either has it or they don’t.

The next stage of this analysis consists of examining how generative AI can be an empathy enabler in a medical profession context. Besides explaining how and why this is useful, I will provide you with various illustrative examples via the use of a widely and wildly popular generative AI app known as ChatGPT. You likely have heard of ChatGPT or perhaps used it. The AI maker OpenAI introduced ChatGPT into the public sphere in November 2022 and the rest is history, as one might say. There are an estimated 100 million weekly active users of ChatGPT. That’s an impressive number and indicative of the vast use of this particular generative AI app.

I will finish up the discussion with some suggested tips and next steps.

Get yourself ready for an exciting and thought-provoking ride.

Empathy As Essential To Medical Doctors

Let’s begin at the beginning.

An often-quoted remark that is attributed to Sir William Osler, a legendary figure in the training of physicians and a pioneer in shifting medical students from lectures-only training to include patient-based clinical encounters, purportedly said this:

One interpretation of the statement is that medical students and medical doctors can readily fall into a mental trap of distinctly not listening to their patients. This can happen due to the rushed nature of being in medicine. Clock in a patient and quickly move to the next. No time for listening is allowed or encouraged. Another downfall is viewing a patient as though they were a machine. You look at the patient in a strictly anatomical fashion. Just gauge what ails them and invoke an exceedingly mechanical solution to their woes.

Perhaps the most dreadful of the interpretations is that there is a gut-felt belief that no genuine need to listen to the patient is required. Consider this line of exasperating reasoning. What do patients know about medicine? Nothing. What might a patient tell you about their malady? Nothing useful. The famous TV show House vividly showcased that patients apparently lie, they cheat, throw you off your game, and otherwise proffer nonsensical utterances. It is clearly a waste of valuable medical time and scarce resources to seemingly listen to patients. Ergo, do the “right” thing and opt overtly to not listen to patients, and furthermore, don’t even let them open the door to talking because it just encourages them to divert from the authentic medical endeavor at hand.

The question arises of how to turn around that kind of reasoning and inspire a listening methodology. In addition, perhaps if medical students don’t already have such denouncing preconceptions, maybe we can start them freshly on a path that won’t be stalled or diverted into a later non-listening mode. Or we have at least instigated a fighting chance of having them be ready for the alluring temptations and gravitational forces that will seek to push them toward a non-listening mindset.

A considered modern version of the Hippocratic Oath that was devised in 1964 by Dr. Louis Lasagna, Dean of the School of Medicine at Tufts University, tries to highlight that the act of listening, or actually being empathetic, needs to be at the core of becoming and being a medical doctor. Here are two salient excerpts from that Hippocratic Oath:

Those words were true then and are certainly still vital now, perhaps even more so in an era of fast-paced medicine that is replete with lots of hands-offs, volumes of paperwork, and tightly timed stipulations for performing medical services.

Empathy Enablement During Medical School

A modern-day research study on fostering empathy while in medical school provides several handy points on this serious and significant topic. The research paper I’d like to reference is entitled “Empathy in Medical Education: Its Nature and Nurture — a Qualitative Study of the Views of Students and Tutors” by William Laughey, Jane Atkinson, Alison M Craig, Laura Douglas, Megan EL Brown, Jessica L Scott, Hugh Alberti, Gabrielle Finn, and was published in the Medical Science Educator, October 2021.

Here are some mindful points (excerpts):

There are useful takeaways in those salient points that I’d like to emphasize.

First, as I earlier noted, suitably making use of empathy leads to greater satisfaction by the patient and likely better medical outcomes. Interestingly, and importantly, the medical doctor is likely to also indicate a higher level of satisfaction too. This makes sense. They were able to better aid their patient, plus, they personally became more engaged and were not simply a bystander or distant observer of their patient.

Lest you disregard that doctors should need to be satisfied with their work, you would be sadly undercutting a quiet but tremendous part of what keeps them in the game of medicine, namely, that you are able to take pride in your work and earnestly believe that you are doing so for the betterment of humankind. That’s a huge motivation and will help in confronting the arduous and vexing trials and tribulations of being in the medical profession.

Another notable point in the excerpted statements is that empathy tends to involve a kind of mental crossover undertaken by the medical professional as pertains to their patients.

The deal is this. A medical doctor or a medical student has to discern how to put themselves into the shoes of their patients. This is not easy to do. The patients being seen are bound to be from all walks of life and the medical professional might have little or no experience in their own life that compares. Fortunately, and as I alluded to earlier, identifiable techniques and methods can be used to aid in undertaking a smattering of a crossover, doing so to some reasonable degree that can provide keen insights into the patient and their circumstances.

A big and persistent concern that faces medical schools is that there is a sour pattern associated with empathy, or shall I call it anti-empathy, that tends to arise once a medical student reaches the latter portions of their medical training. The researchers in the aforementioned paper noted this disturbing phenomenon (excerpts):

Let’s briefly unpack those remarks.

Imagine that a medical school does a wonderful job in the early days of medical education to foster an empathetic perspective in their medical students. Good job, congrats. But this might be a temporary fix. Further down the road, in the latter stages of the medical program, perhaps the assumption is made that the empathy “thing” was already accomplished. No need to push it any further. As such, the schooling aims to pound away solely on biomedical details. Will the medical student still retain their prior learning and engagement in empathetic practices of medicine? Maybe some will, and perhaps a lot won’t.

Adding more fuel to that fire, imagine further that the role models that the medical students are admiring are physicians and other medical professionals who either never thought empathy was useful, or who over years of agonizing devaluation of empathy have let it fade from view. Is a medical student to somehow look past that result and still cling to the earlier encouraged empathetic values? That is a hard pill to swallow and can readily drain the empathy enablement from their tired and exhausted minds and bodies.

That’s why there is much discussion in the medical education realm about formal curriculum, informal curriculum, hidden curriculum, and so on. There might be a formal head-held high proclamation about empathy, meanwhile, the under-the-table practical ground-level perspective is saying don’t be overly concerned about empathy. If you can fit it in, fine, but if not, that’s fine too. In some respects, this often produces so-called tick-the-box empathy. The medical student is asked if they have been empathetic that day with their patients. They tick the box that says yes. The mentoring doctor confirms the yes with yet another tick-the-box affirmation. The paperwork looks dandy.

The empathy, well, probably not so much.

You might be tempted to assume that these issues underlying empathy enablement in medical school might only be confined to a few programs here or there. Sorry, that is not the case. Meta-analyses that scour a wide breadth of medical literature tend to suggest that the problem is pervasive. I’ll highlight one such study in a moment.

Besides the various logistics and influencing factors, another sizable question is what kind of instruction or methods of education and training can seek to get medical students into an empathy mode as a medical professional. If you aim to foster empathy, what approach will get you the biggest bang for the buck? There might be methods that seem miraculous but only have a transitory impact. You want to somehow instill empathy enablement sustainably. A form of permanence is needed else either empathy decay or the roguish powers of depleting empathy will prevail.

A comprehensive meta-synthesis recently reported on these matters. In a research study entitled “Medical Students’ Perspectives on Empathy: A Systematic Review and Metasynthesis” by Emmanuel Costa-Drolon, Laurence Verneuil, Emilie Manolios, Anne Revah-Levy, and Jordan Sibeoni, Academic Medicine, January 2021, here’s what they determined (excerpts):

A key point is that not only is it hard to define empathy, but it is also hard to discern what methods will do best at instilling empathy, especially on a sustained basis. You want to make sure that the medical students can weather the storm. They will encounter lots of harsh winds, blustery snow, and formidable thunderous attacks upon a desire to embrace and retain an empathetic medical mindset and professional disposition.

I’d like to bring up an important mental framework regarding empathy and then we’ll be ready to move into the next stage of this discussion including generative AI. The mental framework involves a clarifying conception that casts empathy as akin to a hydraulic process or model. This will be valuable when considering the advent and adoption of generative AI for empathy enablement in medical doctors and medical students.

Hydraulic Model Of Empathy

When you pour water into a container, you are witnessing the awesomeness of hydraulics. As children, we learn about hydraulics almost without explicit instruction. You tilt a cup filled with water and let it flow into a bucket or similar container. Will the water overfill the bucket? If not, how much-remaining space is available? Can you calculate how many additional cups are needed to fill the bucket? Suppose the bucket has a small hole. What does this do to the calculus of the water, the cups, and the container?

Adults take all of this for granted. Until you see a toddler playing out these difficulties, you don’t realize that you’ve already discovered the nuances of hydraulics. They are ingrained in your mind. Most of the time, you don’t explicitly think about how you think about hydraulics. Only if you are presented with some outlier problems do you start to invoke the precepts that seem readily at hand in your mind.

Why all this talk about hydraulics?

Because one means of conceiving of empathy entails adopting a hydraulics metaphor or model.

Allow me to elaborate.

A medical school student eagerly starts their first year of medical school. The medical program aims to get this student and all other students up-to-speed on empathy and empathetic thinking. Let’s say that we want to attain an empathy level on some scale that we’ll label a 10 as the topmost empathetic capability as a medical professional. Our goal is to get all the medical students to at least an 8. Sure, we might wish for them all to be 10s, but realistically we will accept that they end up around 8 or more. We definitely don’t want any that are less than an 8. That would be disappointing.

Okay, so the medical school student that I just noted is supposed to become at least an 8.

Do we have a long tough haul to get to an 8 for this student, or is it an easy hop?

The answer is that you can’t especially say because we don’t know where the student resides on the empathy scale at this juncture. Perhaps the student is a 7. Hopefully, becoming an 8 should be a breeze. Imagine if the student is already a 10, we would presumably aim to make sure they don’t slip downward and be delighted they are already a 10. If this student is currently a 1, we seem to have a momentous task on our hands. Getting to an 8 might either be rough or perhaps nearly impossible in the time and resources in place to accomplish the empathy enablement.

This mention of a scale associated with empathy is essentially a hydraulics metaphor or model. Recall the child that tipped the cup to pour water into a bucket. In a sense, perhaps crudely, you could assert that the empathy of a medical student is subject to hydraulics. They have some semblance of empathy when they walk in the door of medical school. This empathy will seemingly be further enabled. The mindfulness of empathy rises. At some point, the empathy might wane, such as the reported studies of how medical students in the latter stages tend to lessen their empathy.

I trust that you can see the utility of a hydraulics perspective on empathy.

A medical school student might have empathy leakage, as it were, during the latter stages of a medical school program. If so, and assuming we want to ensure that their empathy maintains whatever level we might have earlier achieved, you need to do something that refills the empathy. An assumption that empathy once reaching a particular level will always remain at that level is in defiance of a conventional sense of hydraulics. Something can happen that drains, evaporates, or otherwise diminishes empathy.

One debate is whether empathy is in the head or the heart. I won’t get into that heated topic here. Instead, let’s go with the hydraulics model. A medical student has formed some ascertained degree of empathy as related to medical work. We aren’t going to say whether it is in the head or the heart. From an external perspective, we are going to focus on how much empathy they embody. Wherever it is, is where it is.

Another debate is whether empathy is purely intrinsic. The viewpoint is that a person has it or they don’t. You can’t turn a horse into a fish. Some retort that a more suitable idea is that you can turn a caterpillar into a butterfly. Everyone is amenable to embracing empathy. For some, it is harder to go up the curve. For some, once up the curve, it is harder to stay there. Anyway, let’s presume that humans conventionally can embrace empathy and that for some it is easier because it is perhaps intrinsic, while others must belabor more so to get it (of course, this takes us down the classic nature versus nurture discourse, an abyss unto itself).

The handy aspect of a hydraulics perspective is that it helps quantify something that without quantification becomes almost intractable to cope with. The old saying is that you cannot manage that which you can’t measure. How can you know where medical students start from when they first enter into the medical school program? How will you know when they have attained a desired threshold of empathy? How will you keep tabs on their ebb and flow of empathetic enablement?

You have a fighting chance with some form of model, such as the hydraulics framework. To clarify, there are oppositions to the metaphor. Maybe we are wrong to envision empathy as some kind of fluid that you pour into the heads of medical students. Perhaps this undercuts the nature of empathy. Of course, the counterviewpoint is that an attack by declaring that you pouring liquid is a cheap shot. Nobody of genuine belief would say that it is that simple. This hydraulic concept is much more complex and is not the same as a cup and a bucket. It is more like an intricate mental plumbing that goes in lots of directions and has all manner of ways to flow, soak, deplete, emerge, submerge, and so on.

One other thing. I don’t want you to necessarily associate the hydraulics model with how generative AI comes into the picture. I say this to note that I merely brought up hydraulics due to its utility and to ensure that you knew what it was. We don’t need it per se for generative AI in this use case. It is handy but not a necessary consideration.

Let’s now move into the generative AI aspects.

The Workings Of Generative AI

I will soon be walking you through the use of generative AI for empathy enablement in medical students and medical doctors. Various examples using ChatGPT will aid in illuminating and illustrating the value of such an approach.

First, some quick background about generative AI to make sure we are in the same ballpark about what generative AI consists of. If you already are highly versed in generative AI, you might skim my backgrounder and then pick up once I get into the particulars of this specific use case.

I’d like to start by dispelling a myth about generative AI. Banner headlines from time to time seem to claim or heartily suggest that AI such as generative AI is sentient or that it is fully on par with human intelligence. Don’t fall for that falsity, please.

Realize that generative AI is not sentient and only consists of mathematical and computational pattern matching. The way that generative AI works is that a great deal of data is initially fed into a pattern-matching algorithm that tries to identify patterns in the words that humans use. Most of the modern-day generative AI apps were data trained by scanning data such as text essays and narratives that were found on the Internet. Doing this was a means of getting the pattern-matching to statistically figure out which words we use and when we tend to use those words. Generative AI is built upon the use of a large language model (LLM), which entails a large-scale data structure to hold the pattern-matching facets and the use of a vast amount of data to undertake the setup data training.

There are numerous generative AI apps available nowadays, including GPT-4, Bard, Gemini, Claude, ChatGPT, etc. The one that is seemingly the most popular would be ChatGPT by AI maker OpenAI. In November 2022, OpenAI’s ChatGPT was made available to the public at large and the response was astounding in terms of how people rushed to make use of the newly released AI app. As noted earlier, there are an estimated one hundred million active weekly users at this time.

Using generative AI is relatively simple.

You log into a generative AI app and enter questions or comments as prompts. The generative AI app takes your prompting and uses the already devised pattern matching based on the original data training to try and respond to your prompts. You can interact or carry on a dialogue that appears to be nearly fluent. The nature of the prompts that you use can be a make-or-break when it comes to getting something worthwhile out of using generative AI and I’ve discussed at length the use of state-of-the-art prompt engineering techniques to best leverage generative AI, see the link here.

The conventional modern-day generative AI is of an ilk that I refer to as generic generative AI.

By and large, the data training was done on a widespread basis and involved smatterings of this or that along the way. Generative AI in that instance is not specialized in a specific domain and instead might be construed as a generalist. If you want to use generic generative AI to advise you about financial issues, legal issues, medical issues, and the like, you ought to not consider doing so. There isn’t enough depth included in the generic generative AI to render the AI suitable for domains requiring specific expertise.

AI researchers and AI developers realize that most of the contemporary generative AI is indeed generic and that people want generative AI to be deeper rather than solely shallow. Efforts are stridently being made to try and make generative AI that contains notable depth within various selected domains. One method to do this is called RAG (retrieval-augmented generation), which I’ve described in detail at the link here. Other methods are being pursued and you can expect that we will soon witness a slew of generative AI apps shaped around specific domains, see my prediction at the link here.

Generative AI In A Medical Empathy Setting

I have dragged you through that introduction about generative AI to bring up something quite important in this medical profession context.

Here’s the deal.

Generic generative AI is not purposely devised to train someone on empathy, nor does it conventionally have data training on the specifics associated with medical students or medical doctors. In that sense, I am going to showcase merely how generic generative AI can be overall applied to this use case. I believe you will observe that the generic does a seemingly impressive job out-of-the-box, despite not being tailored to this specific task.

There are efforts underway to do specialized data training so that generic generative AI can be adapted to the empathy enablement task, including being used in a medical school environment. I want to also note that there are at least two venues for this usage. One is the medical school setting, which I’ve noted throughout this discussion. The other venue entails medical doctors already in practice.

You see, not only does it make sense to aim to use generative AI for medical school students, but additionally do likewise with existent medical doctors. Medical doctors ostensibly greatly range in their respective embodiment of empathy prowess. They too could leverage generative AI in ways comparable to medical school students. I want to plant the notable seed that this isn’t exclusively pertaining to medical students. Medical doctors in practice would be an appropriate target market too. You could enlarge this to also note that medical professionals of all kinds would undoubtedly be able to make use of the same.

An additional caveat to be aware of is that fruitfully using generic generative AI for this use case requires suitable acumen in prompt engineering and how to productively use generic generative AI.

This is a keystone because there are undoubtedly some medical students and some medical doctors already trying to do this on an ad hoc basis. Though their first-mover bravery is noted, the problem is that they might falter when using generative AI for this task or reach a premature conclusion that the tool is not up to the task. In that latter case, they are somewhat right in that the generic has to be adequately guided else otherwise the result might be for not.

As I often note at my speaking engagements, generative AI is like a box of chocolates, and you never know for sure what you might get.

There is something else that almost always comes up when I speak on this topic. The question I get is that if generative AI isn’t sentient, presumably this implies that generative AI cannot be empathetic. Thus, the logic suggests, it would seem to be foolish to use a non-empathetic capacity to somehow aid humans in becoming or being empathetic.

I see this as a red herring.

First, you might try the same argument about watching a film.

A movie or video about empathy regarding medical students and medical doctors is obviously not sentient and does not embody empathy. Yet, research shows that such videos can be instrumental for this purpose. To be fair, the greatest value arises when the video or movie is coupled with group interaction, sometimes pre-viewing and then post-viewing. The video is a viable tool that gets a mindset underway and can be a memorable experience that will last long after the group discussions. Group discussions in the absence of a video or movie can be useful, though when coupled with a video or movie can be more inspiring and stimulating. The film nonetheless can still be viewed individually and useful even if a group discussion isn’t also paired with the movie.

One notable research study entitled “Using an Animated Film to Foster Understanding of and Engagement in Addressing Implicit Bias Through Empathy Across the Health Care Continuum” by Jennifer Adams, Renee Williams, Colleen Gillespie, Maura Minsky, Jonathan LaPook, Richard Greene, Joseph Ravenell, Jessica Dennehy, Cristina Gonzalez, Academic Medicine, November 2023, described how a film can have a demonstrative impact and especially when paired with group interactions (excerpts):

A likewise methodological approach can be taken when using generative AI.

Envision this.

Medical students make use of generative AI that has been specially prepared via establishing prompts or via in-context modeling to aid in training about the role of empathy in a medical context. Before doing so, perhaps they have a group discussion about where their mindset is on empathy. They then use the generative AI. Afterward, they meet again as a group. Each of them will have numerous ideas and thoughts as a result of using generative AI. The group discussion will be invigorated due to the generative AI usage.

Furthermore, and this is a huge added plus, this is not a one-and-done activity. The difficulty with a film or movie is that it is usually watched once and then not usually repeated since the viewers already know what it has to say. Producing a multitude of films can be costly. In contrast, the experience when using generative AI will likely vary each time the AI is used.

The generative AI can also be used in an incremental fashion. As medical students become more versed in empathy, generative AI can be prompted or devised to shift into more advanced modes. The generative AI can also provide feedback throughout.

I typically describe the use of generative AI in this context as being able to do at least five significant activities:

I realize that you might still have a lingering qualm that generative AI is doing those activities and yet does not embody empathy. I already noted that group discussions could be paired with the use of generative AI. But let’s for the sake of discussion take that out of the equation.

Does generative AI, despite not being empathetic in an embodied manner, still provide an effective means of performing facets such as tell me, show me, role play with me, assist me, and give me feedback?

I would intuitively say yes. Research studies are starting to line up to empirically explore this notable question.

I’ll briefly mention one recent study that took a slightly different angle on the generative AI and empathy consideration. In a study entitled “Comparing Physician and Artificial Intelligence Chatbot Responses to Patient Questions Posted to a Public Social Media Forum”, John W. Ayers, Adam Poliak, Mark Dredze, Eric C. Leas, Zechariah Zhu, Jessica B. Kelley, Dennis J. Faix, Aaron M. Goodman, Christopher A. Longhurst, Michael Hogar, Davey M. Smith, JAMA Internal Medicine, April 2023, the researchers undertook an experiment that took this approach and has these stated outcomes:

I won’t dive into the details of the study here, but wanted to bring up that the study suggests that generative AI can appear to be empathetic.

In this instance, the expressed empathy seemingly was as much or more so than human medical doctors, though that is somewhat a gray area due to the comparison being based on a social media platform with presumed medical doctors responding in short form to wanton postings, rather than how they might respond to their actual patients under their care.

My point is that rather than being preoccupied with whether generative AI embodies empathy, we can instead concentrate on whether generative AI can exhibit or express empathy. Those are two different considerations. Let me explain. Recall that generative AI is data trained on massive amounts of human-written text. From that text, the pattern matching has mathematically and computationally likely patterned on how humans express empathy. If you assert that generative AI is merely a stochastic parrot that mimics what humans have said, you will at least concede that the generative AI ergo has a solid chance at expressing empathy.

You might scowl and exhort that expressing empathy is not the same as a heartfelt feeling of empathy.

Sure, you can make that case.

But, the bottom line, if the empathy expressed is otherwise indistinguishable from the expressed embodied empathy by humans, how can you definitively contend that the AI is so deficient as to be unusable or incapable? See my discussion about the Turing Test to see more about this black box kind of comparison, at the link here.

This is one of those endless arguments and I welcome the debate. For now, let’s go the practical route and see what generative AI can accomplish.

Examples Of Generative AI In Medical Empathy Contexts

I will show you some examples of using generative AI in the tell me, show me, role play, and related modes of operation.

I opted to use ChatGPT. The same types of interactions can readily be undertaken with other generative AI apps such as GPT-4, Bard, Gemini, Claude, etc. By and large, you would not likely notice much of a difference among those generative AI apps in this use case (particularly because this is generic generative AI).

If you decide to try out the same or similar dialogues using ChatGPT or some other generative AI app, please be aware that you almost for sure will not get the same exact responses. Generative AI makes use of statistics and probabilities to decide which words should be included in the generated responses. You will discover that even if you ask the same question twice, you will likely get a different answer each time. That’s by design. It is a feature, not a bug.

In my first example, I will do a Tell Me. My prompt asks ChatGPT to tell me about ways in which someone in medical school can enhance their empathy. I will say that I am in medical school. The prompt and the responses are shown in quotation marks.

“Developing empathy is crucial for healthcare professionals to build strong, trusting relationships with patients. Here are some suggestions to help you cultivate empathy as a medical student:”

“Active Listening:”

“Pay full attention to your patients when they speak.”

“Avoid interrupting and allow them to express their thoughts and concerns.”

“Validate their feelings and acknowledge their experiences.”

“Put Yourself in Their Shoes:”

“Try to understand the patient's perspective and imagine how they might be feeling.”

“Consider the emotional and physical aspects of their experience.”

“Learn Patient Stories:”

“Take time to learn about your patients beyond their medical conditions.”

“Understand their personal history, lifestyle, and any challenges they may be facing.”

“Practice Cultural Competence:”

“Be aware of and respect cultural differences.”

“Learn about the cultural backgrounds of your patients to better understand their beliefs and values.”

“Non-Verbal Communication:”

“Pay attention to non-verbal cues such as body language, facial expressions, and tone of voice.”

“Be mindful of your own non-verbal communication to ensure it conveys empathy.”

“Express Empathy Verbally:”

“Use language that shows you understand and care about the patient's experience.”

“Phrases like ‘I understand,’ ‘I'm here for you,’ and ‘I'm sorry you're going through this’ can convey empathy.”

“Develop Self-Awareness:”

“Reflect on your own emotions and biases to better understand how they may impact your interactions with patients.”

“Consider seeking feedback from mentors or peers to gain insights into your communication style.”

“Read Patient Narratives:”

“Read books, articles, or blogs written by patients about their healthcare experiences.”

“This can provide valuable insights into the emotional aspects of illness and healthcare.”

“Remember that empathy is a skill that can be developed and refined over time. Continuously seeking opportunities to connect with patients on a personal level and integrating feedback into your practice will contribute to your growth as a compassionate healthcare professional.”

End of ChatGPT response

I’d suggest that the ChatGPT response is pretty much on-target and expresses the same kinds of guidelines and hints that you might find in vetted online material on this topic. That’s good.

This Tell Me example though is somewhat stilted since there isn’t any interaction going on. The true value of generative AI is interactivity. You want to get the medical student or medical doctor engaged. The act of simply reading material is useful but not as likely memorable and activating.

Let’s do some role-playing.

I will pretend to be a patient needing medical advice. My prompt instructs ChatGPT to take on the persona of an empathetic medical doctor. This will allow me to see how generative AI handles empathy considerations. More importantly, a medical student or medical doctor might learn from this kind of repertoire dialoguing while pretending to be a patient. Likely, some aspects will be perhaps a guiding light, other aspects might help to steer clear of facets that don’t seem suitable.

Here we go.

End of ChatGPT response

I wanted you to see the value of interactivity when it comes to using generative AI.

In my role as the patient in this scenario, I could take things in whatever direction I wanted to do. I could be an abrasive patient and see what responses arise. I could be polite and an unassuming patient. The generative AI will attempt to adjust as I adjust. We are in a dance, a tango.

The dialogue is not pre-determined. All the interaction occurs in real-time and flows along.

I’d like to flip the interaction and have the generative AI be the patient. This will give me a chance to test my chops in an attempt to be empathetic. An added twist will be that I am going to ask the generative AI to provide feedback to me along the way. I want to get constructive feedback about how I am doing. I don’t have to ask for this, but the feedback is bound to wake me up about how I am doing on an empathetic basis.

Take a look:

End of ChatGPT response

You hopefully observed that I purposely shifted from being less empathetic to being more empathetic.

I wanted to discern whether the generative AI would catch this. As you can see, the responses by ChatGPT let me know when I was veering away from empathy, and when I was becoming more empathetic.

As mentioned earlier, these examples are only using the generic generative AI. I could readily instruct the AI to be more critical of my responses and come after me about my empathy. In this case, the default is that the generative AI has been data-trained to be relatively calm and reassuring. Parlance in the AI field is that you can change the temperature of the AI and get it to be more heated if that’s what you want to experience.

In my last example, I will show you something that is kind of fun and presents a challenge for you. I’ll tell ChatGPT to craft a dialogue between two doctors. One is supposed to be empathetic, and the other is a doctor who eschews empathy. I bring this up because as pointed out earlier, one issue for medical students is they might end up interacting with hardened or soured doctors who give only scant lip service at best to empathy.

I’d like you to examine the dialogue. Your assignment is to assess both of the doctors. What lessons can be learned from this generative AI-produced dialogue?

Put on your thinking cap:

“Empathetic Doctor (Dr. Smith): Hey, Dr. Jones, how has your day been? Any interesting patient encounters?”

“Less Empathetic Doctor (Dr. Jones): Same old, same old. Patients come in with all sorts of complaints. Honestly, I don't get why they make such a fuss about it.”

“Dr. Smith: Well, you know, it's crucial to understand and address their concerns. It helps in building trust, and patients appreciate knowing that we care.”

“Dr. Jones: Trust? They're here for medical advice, not therapy. Anyway, had a guy today complaining about headaches and fatigue. Probably just needs to get more sleep or something.

“Dr. Smith: It's important not to dismiss symptoms outright. Headaches and fatigue can have various causes, and we should explore them to ensure we're providing the best care.”

“Dr. Jones: Whatever. Gave him some painkillers and told him to rest. He'll be fine.”

“Dr. Smith: Well, I had a patient with similar complaints today. Took the time to discuss their daily routine, any recent stressors, and suggested some lifestyle changes. It turns out they're dealing with a lot of stress at work.”

“Dr. Jones: Stress, again? People need to toughen up. Can't be holding their hands through every little issue.”

“Dr. Smith: I find that addressing the underlying causes can make a significant difference in their health. It's not just about handing out prescriptions; it's about understanding their whole situation.”

“Dr. Jones: I don't have time for that. Too many patients, not enough hours in the day. If they want someone to listen to their problems, they should see a shrink.”

“Dr. Smith: Patients value a doctor who listens and cares, not just someone who prescribes medications. It's about the quality of care we provide.”

End of ChatGPT response

How did you do in assessing the two perspectives?

I’m sure you aced this one.

Conclusion

I’ll finish up this discussion with a few brainteasers that will hopefully inspire your added interest in this heady subject.

The common refrain that doctors need to have a good bedside manner has morphed to also include so-called “webside” good manners too (being able to communicate remotely with patients, via Zoom-like facilities or texting and emailing). One approach to using generative AI is that the doctor inherently becomes more empathetic as a result of their hands-on use of generative AI. Another aspect consists of doctors opting to use generative AI as their empathy surrogate.

This means that rather than the human doctor responding, they use generative AI to do so in their stead. I refer to this as a dual-use of AI because it entails some positive merits but also bodes for negative consequences (ironically, the doctor potentially becomes less empathetic and more estranged from their patients). For more about dual-use AI considerations, see my discussion at the link here.

Consider this next mind-bender.

There is likely a pre-selection bias associated with those who seek and can successfully get admitted into medical school. The chances are that such a person is cut from the cloth of being devotedly science-oriented and less so someone considered a person-person. A problem arises that perhaps trying to instill empathy is an improbably upstream going battle. You can’t make a square peg fit into a round hole, as they say.

Can generative AI aid in this monumental transition during medical school? One viewpoint is that since the use of generative AI can be long-lasting, the medical student who becomes a medical doctor can continue to rely upon generative AI for the rest of their medical career. They can lean into generative AI whenever so needed. Do we want this, or does the use of generative AI in this extended way become a habitual or unsavory crutch?

Another worthwhile consideration is that generative AI is advancing to become multi-modal, see my analysis at the link here. Multi-modal generative AI can potentially use text, images or pictures, audio, video, and all manner of communication modes. This dovetails into the other means of getting medical students up-to-speed on empathy. For example, a film about empathy for medical doctors could be weaved into a generative AI dialogue. The AI would interact with the medical students about the lessons gleaned and be responsive to their questions and comments.

One additional brainstorming idea is that if you favor the hydraulics metaphor of empathy, generative AI could be utilized to gauge the rising and lowering levels of a doctor or medical student's empathetic enablement. I’ve discussed that generative AI can be used for sentiment analyses, see the link here, and could be used similarly in this medical context. An upside is that the generative AI can provide empathy booster shots, in a sense, when needed. A downside is that the doctors or students might feel they are being subjected to a Big Brother overseer. The bottom line is this avenue has to be undertaken cautiously and mindfully.

Let’s conclude for now with a notable quote by the famous psychologist, Carl Rogers. He purportedly said this about empathy:

Those in the medical profession will inevitably be using generative AI in various capacities, doing so will be pervasive in the medical field, and as such, we need to consider what are the best ways to intertwine generative AI into the enduring question of aiding medical doctors and medical students in embracing empathetic medical practices.

Keep your ears open, listen intently, and join in this exciting and challenging new era of generative AI-augmented doctoring. Use lots of empathy as you do so, and don’t worry because we can always make more.

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