On Friday, March 13, 2020, Governor Jim Justice held a press conference, one I watched virtually, and, as I ate cheddar cheese and Triscuits and put my feet on my desk, I felt unwell. The previous weekend had been the last “normal” thing my son, Isaac, would do in high school, the West Virginia All-State High School Band. And by “normal” I mean a superspreader event where my entire family contracted Wuhan-strain COVID, one that put everyone down for a week, and gave me the thumping pain of orchitis. If you’re not familiar, “orchitis” is a fancy medical word for testicle pain, and mine lingered for weeks.
On the following Monday, the activities of my three-kid family ceased spinning while, at the same time, my internal medicine doctor job raced into overdrive. Each day dawned with previously unthinkable disruptions, including my hospital being locked down and surgeries canceled, a disruption that lasted two months. My children met the pandemic with enthusiasm and spent their newly found “free time” playing the trumpet (Isaac), piano (Liam), and Irish dancing (Eliza). This was in addition to watching every episode of The Simpsons and baking cookies almost every day. Our dog, Trixie, had never been happier. “Get more chocolate chips” was a text message I received more than once.
As a failed guitar player, I was jealous of the creative outlets my children had, and I fell back on running, as was my pattern. More a vocation than a hobby, running had occupied a large space in my life since 1994, my freshman year at West Virginia University, when soccer ended as a competitive sport in my life. The massive COVID-19 tidal wave washed me inland to a strange and novel vantage point. With few bearings and little understanding, I jogged back home and, as I did so, I reassessed my profession, public health, politics, my community, and (time would tell) me. I was scared in those fraught moments but I knew that I had a front-row seat to whatever COVID-19 was going to do to my community. And by “whatever” I knew it would be devastating, a thought that weighed on me.
I famously said to a med school friend at the time, “I am going to sign a lot of death certificates.” As this psychological soup boiled in the pressure-cooker of my brain, it is not a surprise that it exploded. When it did, there was the briefest moment of clarity, one that said: Document your experience. For some unknown reason, this resonated inside me and I spent precious little time debating the merits of this idea, a first for me. I reached out to two artists, one in photography and the other in audio production, an inspired choice that set the resulting project, Healthcare is Human (HIH), on the path of success. Why did I make these choices when others sat at home and watched Tiger King? To this day, I still am unsure.
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Had I been a competent guitar player, I could have sat on the front porch and played “A Pirate Looks at Forty” by Jimmy Buffett, “Best of My Love” by Eagles, and similar tunes. I could have stepped inside when the cookies were ready. Instead, I placed a microphone in front of my fellow health care workers and asked them, “How is your day going?” This was, of course, while they worked in a pandemic, and moments before I tried to convince them to pose for a portrait photographer. It’s hard to believe it now, but these choices seemed rational at the time.
In the maelstrom of COVID-19, toxic American politics, and the rise of social media and disinformation, HIH set out to allow health care workers to tell their own stories using their own voices and images. As an expert in speaking with patients, this kind of storytelling (simple, honest, true) struck me as authentic and real. I turned my history-taking skills from clinical practice (“story-receiving skills,” actually) and used them to listen to my fellow health care workers. These were brave individuals, but, more importantly, each one was a mother, father, sister, brother. No one was a hero. Each of them fumbled along while they tried their best, a process best described by my colleague Colleen, who said, “It was all very messy.”
The photographer on the project, Molly Humphreys, took intimate and captivating portraits of health care workers in the Eastern Panhandle of West Virginia. The resulting images helped me understand who stepped into harm’s way, and why. Many of our subjects later commented, “My family didn’t understand what I actually did until they saw the photos.” I recorded interviews, first with my smartphone and later with a proper Shure microphone, digital audio files I shared with Kym Mattioli. A career audio professional, Kym’s skills amplified these powerful stories and, when people heard their interviews presented in a professional and artistic way, they felt seen, heard, and valued.
After some initial success, which included an exhibit at The Museum of the Shenandoah Valley, in Winchester, Virginia, HIH expanded to the quartet that we are today: photographer, audio producer, poet, and physician. After several years, our stories naturally moved beyond the pandemic. As the creator of HIH, my major contribution has been embedding artists in health care spaces, placing them in direct conversation with staff, students, faculty, and residents, within the moments that demonstrate the best and worst in health care. I know where these moments reside because I’ve spent my career embedded in them myself.
The HIH creative process has emulsified disparate elements which, if regarded separately, would not be miscible with one another. The resulting creations (artifacts) allow us to see, really see, what we are usually too busy to regard. In our world of fast-twitch clickbait, this “close attention” opens the aperture of meaning-making. Despite being in health care for two decades, I lacked these skills, and I understood very little about the forces that shaped my life and practice of medicine. That is, until HIH prompted me to pause, reflect, and, by doing so, I have been changed forever.
In the past six years, HIH creative output has been so robust that, in many universities, we would be regarded as an “institute.” Our team, however, prefers to lean into, not away from, our subjects, and we are more comfortable with terms like “community.” HIH is steeped in small-town culture, intimate and personal, and while our location is Martinsburg, West Virginia, much of America is reflected in our work. The rising cost of living, increasingly specialized care, lack of access, commercial agendas, lack of medical services, no insurance, substance abuse, deaths from despair, we see all this and more in granular detail.
All HIH participants have been volunteers and I have a deep satisfaction from the people, moments, and subjects that we have explored since 2020. Storytelling, the “currency” of health care, has never been under greater threat than it is today from political, social, and technological forces. AI, bots, the internet, and other virtual places of “advice” are a major threat to the trusted messengers, aka the humans in health care, who are accountable to other humans. This accountability is, perhaps, the greatest lesson of HIH. While imperfect, our attempts to serve one another are how we forge connection, find forgiveness, and offer comfort. And it can be as simple as “I’m so sorry that your surgery did not go well.” Is ChatGPT going to apologize? And if Company X told us that their bot could do that, it would be meaningless. Is a machine going to deliver your baby, counsel you about birth control, or administer a flu shot?
Some titans of technology foolishly believe that the stories of health care, the actual words, are predictable, as evidenced by the billions (BILLIONS) sunk into large language models (LLMs). These models exploded after Google introduced the concept of “transformer architecture” in a landmark paper, “Attention Is All You Need,” in December 2017. LLMs have become the darlings of Wall Street and dazzled investors, but I am more concerned about their fantasies and fallacies. For us, the practitioners of health care, we know that nothing, nothing, about humans is predictable. And this is true at the same time that our lives have similar phases and stages, themes that approach the universal. Even with our common experiences, how each of us experiences life, injury, illness, sex, cancer, and aging is unique as our fingerprints.
Humans are messy and chaotic, full of entropy and pain, but HIH artifacts tell additional stories, ones that are beautiful and poignant. When we regard these artifacts, we see each other and, in doing so, might glimpse ourselves. Our innate biological response to the “other” is, at its best, something a computer can never “know”: empathy. This exchange only occurs between two sentient beings and often one of them is in pain. And this person might be searching for one, just one, other person to see, hear, and know their story. It is entirely possible the lucky recipient of this exchange could be me or you.
When HIH began in 2020, there was no artificial intelligence. Today, these technologies are ubiquitous and they can do remarkable parlor tricks with adding, sorting, searching, tasks done without knowing or feeling. How could it possibly “know” or “feel” anything? And yet. And yet, it is hoisted onto us by companies and smiling CEOs who tell us to speak to it and it will “speak” back. Speak back to me? Don’t make me laugh. When you think about it, “Don’t make me laugh” is illustrative because, how “intelligent” can these machines be if they lack the ability to crack up laughing when I play “Springtime for Hitler” from The Producers on my car stereo?
We are in the midst of the great hoodwinking of humanity and the two areas that worry me the most are in education and health care. If we outsource our listening, writing, thinking and speaking in health care to bots, machines, and algorithms, what do we lose in the process? HIH demonstrates that the human dyad must remain health care’s North Star. The sharing between doctor-patient, nurse-patient, patient-therapist, and between coworkers represents organic, empathic intelligence, and it has been the key to our survival as a species.
As an individual, I cannot stop AI’s arrival in my workplace, profession, and country. What I can do, however, is continue working with artists in health care spaces, telling stories and creating artifacts. HIH captures the moments, creates the objects, that express the inexpressible. In America today, health care is a massive industrial complex, an edifice where we have our joints replaced, cataracts removed, children born, we die, we survive, and our need for meaning never ends. At the outset of HIH, the “human” in our name had one set of connotations and, now in our seventh year, I have never had a stronger affinity for the humans who deliver, and receive, health care. As more and more computers occupy the health care space, we will rely increasingly on living, breathing humans to make judgment calls, guide us through decisions, and dialogue about ethical dilemmas.
So much of health care today is not “What can we do?” More often it’s “What should we do?” And “If we do that, why?” Computer and artificial intelligence can never approach these questions. In my experience, these conversations are heavy and hard, often done with tears in the eyes of the patient, their family, or me. As someone who works and teaches in health care, we are going to survive the threat of these computers (and their billionaire creators) only if we double down on prioritizing, investing, and nurturing the humans in health care. If you work in health care, what will you do to contribute to this effort?
I am going to continue teaching and mentoring the storytelling skills that form the heart of health care, modeling these “analog” skills for my internal medicine residents, medical students, and colleagues. Every time I can highlight the empathy and organic intelligence of humanity, I will do so. And when I cannot find the right words, when I am suffering from a lack of inspiration, my artist friends will create the artifacts, the ones that speak to, and for, all of us. And I expect that, within their beautiful images and words, I will find my own humanity and I will be reminded that my empathy is the part of me that is most needed at work. Health care is human at its core and, imperfect and imprecise, I will do my best, knowing that none of this is predictable. If it were, we would be bored. Or, we would be robots. And that, my fellow humans, sounds to me like the worst fate of all, being denied the pleasure, and pain, of this human existence.
Healthcare is Human creative partners Ryan McCarthy and Renee Nicholson are seen here recording the podcast. Photo by Molly Humphreys.
Ryan McCarthy is an internal medicine physician.
