First published in The Sun, January 2016
Interview by Janice Lynch Schuster
I first met physician Raymond Barfield in 2009 in Tunisia, where doctors and other health professionals had gathered to talk about how to improve care for people with cancer and HIV/AIDS. I heard Barfield speak eloquently of the need to bridge the worlds of medicine and the spirit. On the trip home to the U.S., during a layover in the Paris airport, I spotted Barfield hunched over a notebook and writing in longhand. He told me he was working on a novel and that he also wrote poetry and played guitar. I remember thinking, Isn’t healing the sick enough for one lifetime? Honestly I may have just felt jealous.
After the conference Barfield and I kept in touch. A few years ago I developed a painful condition called burning mouth syndrome, and he has assisted me in my struggle to find a treatment that works, often reminding me that art can help the healing process. He encourages me to see the beauty of the everyday, something he does in his own life, not only in his daily practice as a doctor who cares for children living with cancer and other serious illnesses, but also as a musician and writer.
Barfield grew up in Decatur, Georgia, the son of a Presbyterian preacher who rose early each morning to pray and read the Bible. “He prayed more than any other person I know,” Barfield says. “And he lived by the spirit. He would wait for the spirit of God to move him if he had an important decision to make — even a small decision. It drove the family nutty sometimes.” As a child Barfield had what he calls a “conversion experience” — a direct encounter with God so overwhelming that he asked to be baptized again. By the time he was a teenager, his days were punctuated with prayer from beginning to end.
In college he got a BA in philosophy, then went to medical school at Emory University in Atlanta, where he spent his days memorizing obscure scientific terms, information that he says has had little relevance to his practice as a pediatric oncologist. The process of becoming a doctor seemed to reduce the mysteries that fascinated him — birth, death, hope, tragedy, suffering — to biology. “The language of emotion or imagination,” he says, “was marginalized or mocked. Where was the beauty? Where was the sense of calling?”
After completing his degree and medical residency, Barfield earned a PhD in philosophy. In 2004 he took a position in pediatric oncology at St. Jude Children’s Research Hospital, where he performed bone-marrow transplants on children with cancer. Nearly 40 percent of his patients died, and the long, difficult hours of caring for severely ill children began to wear down his spirit. “Something in me broke,” he says. Although he continued to function in his job, he had lost the joyful faith he’d had since childhood.
In the ten years since then, Barfield has slowly recovered his belief in God, but in a different, more nuanced form. He currently works at Duke University in Durham, North Carolina, where he is a professor in the schools of both medicine and divinity. He also runs the Pediatric Quality of Life Program (Palliative Care) at Duke Children’s Hospital & Health Center. Although most of his patients survive, about a hundred die each year — an average of two a week. For Barfield every encounter with a sick, dying, or frightened patient is fundamentally a spiritual — if not overtly religious — experience. “I pray silently before I go into rooms,” he says. “I confess fear, and I tell the truth.”
Barfield has published a book of poetry, Life in the Blind Spot, and a novel, The Book of Colors, which came out in 2015. He is a husband and father: his wife, Karen, is an Episcopal priest, and they have two children, Micah and Alexandra.
Last fall Barfield and I talked at his home in Carrboro, North Carolina. Although it was not particularly chilly out, he was up at five to begin his day by building a fire and writing for a few hours before heading to work. The centerpiece of the living room is a stone fireplace, and the walls are covered with floor-to-ceiling bookshelves. I rode with him to drop off three of his guitars with a luthier, someone who builds guitars and also restores and repairs them. I knew that Barfield feels a deep connection to his instruments, and I could tell he was worried that the luthier might slip and damage his favorite, a Maton.
“Don’t fuck up,” he told the luthier with a smile, snapping shut the case.
Back at his home Barfield and I discussed the problems he finds in medical education and in the profession, and the challenges these present not only to doctors but also to the patients for whom they care. “I take it as a religious discipline to be prepared to fail,” he says, “and to weep with the injured because of my failure, and to grow from it, and to move on with hope. That is the nature of medicine as a practice, and it is sorely missing from the advertisements about the ‘miracles’ we perform at hospitals.”
Lynch Schuster: When you meet someone and they ask what you do for a living, what do you say?
Barfield: I usually say that I’m a pediatrician, or else just a doctor. If I tell someone that I am a pediatric oncologist, it’s often a conversation stopper — or, at least, a conversation shifter.
What people don’t realize is that being a pediatric oncologist is a happy job a lot of the time. And even when it’s filled with sorrow, it is still the job I want to be doing.
Keep in mind that 70 percent of the children I treat are cured of their cancer. For the most common childhood cancer — acute lymphoblastic leukemia — we are reaching a 90 percent cure rate. Forty years ago that rate was less than 10 percent.
But if 70 percent are cured, that means 30 percent die. Helping people near the end of life has changed me. Before I became a physician, I had never seen anyone die, and death felt like a vague future possibility. Now I live every day in awareness of death, and my life is better for it. My dying patients help me to delight in small wonders and to grieve the times when I’ve hurt others. Patients often tell me about what they have loved or regretted and what they wish they still had time to do. How could I walk away from that and not see my own opportunities differently? I am not always a good student, because denial is tenacious, but the regular experience of death is one way to stop being forgetful and inattentive and just be grateful.
As I’ve changed, so has my treatment of the dying. I have learned to listen to the needs of the people in front of me. Sometimes they need silence. Sometimes, surprisingly often, they need to laugh.
Lynch Schuster: Of all the medical specialties, how did you decide on pediatric oncology?
Barfield: I was two weeks from going to Columbia University to do my graduate work in philosophy so I could get my little professor glasses and teach college students the meaning of life when my girlfriend broke up with me. I sold my car and used the money to go to Europe and walk around for a year. In Germany I occasionally stayed with a friend’s father who was a surgeon, and he would take me to the operating theater to watch. Surgery just hit me with a force I had rarely felt. I thought, This is what I want to do.
In my junior year of medical school, during my pediatric rotation, the pediatric-oncology ward again changed my vision of what I wanted to do. I was stunned by the way the children, families, and staff interacted in the middle of this terrible situation. Somehow they were carrying on. Though it meant shifting my career goals and the way I viewed medicine, I decided this was my calling.
A mentor of mine, a pediatric professor at Emory, had a three-year-old son with metastatic neuroblastoma. The cancer was everywhere. I was the little boy’s doctor in the intensive-care unit [ICU] night after night. I watched my mentor go from being a professor to being a terrified mother. She began to suggest improbable treatments to me: Couldn’t I do granulocyte transfusions or something? She was desperate to save her son, who was hooked up to IV drips, overmedicated, completely unhappy, unable to sleep, and experiencing chronic fatigue, on top of being a very sick three-year-old. We all knew he was dying.
One day my mentor was lying next to her son in the ICU bed, where he was miserable, and she just looked at me and said, “We’re going home.” I was floored, but I did what needed to be done to release him, and my mentor and her husband brought their little boy home to their own bed, where they lay together for a few more days before he died surrounded by his family.
That was my first realization that an important part of being a doctor in this field is being able to stand by these children and their families when you don’t know how to save the patient. It went against the instruction that I’d received as a physician. It went against the models that my other physician mentors had provided. And it took years for me to learn to do it well.
Modern medicine discourages doctors from getting to know the human beings they are treating. A physician is given twenty minutes with a patient, and then the doctor’s performance is judged based on how much revenue was generated for the medical institution. It’s not that the institution doesn’t care about humanity; it’s that the institution doesn’t know humanity. The hospital administration spends its energy on finance, risk management, and documentation. I have a lot of respect for people who enter administration, because they are up against enormous forces. But many of their attempts to do good work end up causing agony for the sick and for those who care for them.
Philosophy, theology, and literature can actually help us make medicine a communal activity again. We need to return medicine to a profession that doctors will tell their kids to consider, because the demand for medical care is growing.
In the middle of caring for kids with cancer, I realized that this practice is living philosophy. When I stood at the bedside of a dying child, the questions that philosophy asks seemed newly urgent: What kind of universe do we live in? Is there anything after death, or are we all just a bunch of random atoms bumping together? How do we know what we know? (Philosophy professors call that last question “epistemology.” Dying people call it damn important.) Is there a God? I promise you that dying Southern Baptists and dying atheists both question their beliefs. The philosophy of religion is more than a course title when you’re asking these questions in the hospital or in hospice. No wonder Socrates said that philosophy is preparation for dying.
Lynch Schuster: After doing research at St. Jude Children’s Research Hospital, you became a professor at Duke, with appointments in the schools of medicine and divinity. That’s an unusual combination. What do you do?
Barfield: My goal is to mix the two. I can’t stop being a physician when I am teaching in the divinity school, and I can’t stop being a philosopher when I am caring for a dying child in the hospital. It is all, finally, the same thing for me.
I have my divinity students come to the oncology unit to serve as chaplains, and I have my third-year medical students come to the divinity school and ask questions about the meaning of life, death, and suffering. More and more doctors-in-training want to explore these mysteries as a central part of their education, but contemporary medicine doesn’t let them.
The language of biology dominates medicine. Physicians use biology to help people, but to be good doctors, we also need to know something about what matters to people when they are sick or dying. Theology has been asking questions that matter for a long time. Doctors who treat the dying, if they are really paying attention, can’t avoid these questions. I want to help my students make these inquiries a part of their vocation.
Being a doctor raises many other questions for those with religious convictions: Will I perform abortions? If so, how late in a pregnancy? Will I turn off life support for a brain-dead patient whose family wants that support to continue? Will I refuse to turn off life support for a patient who might recover but whose family says he or she wants to die? Will I give morphine at doses that hasten death when someone has intractable physical pain? Will I give medicines that hasten death when someone has intractable psychological pain?
Biology can say a lot about an embryo, but it can’t say what an embryo is. That is a philosophical and theological question. It’s the same with death. Biology can describe the physiology of dying, but the question of what constitutes death is a philosophical and theological one. Medicine doesn’t know what death is.
Most adults in the U.S. still die in a hospital setting, away from all that they value and everything familiar to them. Sometimes they want to be isolated because their disease makes them ashamed to be seen. They are depleted. Their identity has been lost. They may smell bad. They may have to wear a diaper. This isolation might seem inevitable, but it is not. We can help by creating a hospital culture in which a visiting pastor feels welcome. We can create a hospital culture that values sleep, delicious food, and quiet. Hospitals are noisy and bright. If hospitals practiced simple hospitality, they wouldn’t feel so alien to us.
When you walk into a hospital, everything about it tells you, “Don’t go behind this door. Don’t look through this window. Don’t touch this. Know your place.” You need to have the right coat on to get into the back spaces of the hospital, where people are dying. Even though death is in everyone’s future, we almost never see it, because we hide it. Children aren’t allowed into the ICU to see their dying grandparents once flu season starts.
But medicine does not own dying. Humans preside over the holy mystery of dying. It isn’t fair that something so important is so hidden from us. Our lack of familiarity with death is one reason it shocks us when it shows up in our lives.
Lynch Schuster: We like to think we can fix all sickness.
Barfield: Right. We believe we can cure death. Medicine has put itself in a difficult position, because it does extend hope to the very ill. When you come to a nationally recognized cancer center, like we have at Duke, you are hoping for a cure, because your doctor back home didn’t know how to treat the cancer. And Duke is going to say there is hope for a cure. Its message is “We’re smart, we’re cutting edge, our technology is advanced, and we never give up. If what we have doesn’t work, we’ll try experimental therapies. We will get there.”
The unspoken goal is to rid ourselves of death. We forget to ask: Do we want this? Do I not want to die, ever? Why? It’s easy to say, “Of course I don’t want to die; I have people I love, work I enjoy, goals to accomplish.” But it is not only our goals and loves that make us want to keep living — it’s our terror of death. This terror is powerful and difficult to talk about. It drives medical decisions. It drives the distribution of funds. It drives campaigns for research to cure diseases.
It is easier now to have an illusion of ultimate control than it was fifty or a hundred years ago, when we weren’t as good at curing diseases. Today we can hang on to that illusion to the bitter end. And we have made the end bitter indeed. I’ve seen people who are surprised when their ninety-five-year-old mother dies. And although she spent 94.5 years of her life in the space where she raised children, where she suffered and displayed courage, where she overcame difficulties, where she cooked meals and entertained and worshiped, we are going to have her die in an ICU, surrounded by people in lab coats talking about her not in the context of her life but in the language of medicine, of biology.
I try to model a different way. I don’t wear a white coat. I make a point of asking patients about something besides symptoms. I remind people that they are not their disease. I tell people that I consider myself a guest in their story, and that I am there to listen to them so that I can figure out how I can help them the most. And if they want a guide, someone who has seen thousands of patients and who will offer his best judgment, I’ll give them that.
I want the medical students and residents and fellows who work with me to see what it looks like to respond to a whole person instead of just lab numbers. I use deliberately ordinary language. None of my patients “ambulate” — they walk. I tell medical students to talk to patients the way they do to people outside the hospital. When they fall into medical language, it tends to confuse instead of clarify. The student will say, “The patient is a twelve-year-old Caucasian male who presented with sinus tachycardia . . . ,” et cetera. Then I will say to the patient, “Hey, Johnny, sounds like your heart was beating pretty fast.”
The language people use is a sign of what they think is important. Listen to the way doctors talk. Most of their language is biological, mixed with the language of insurance companies and hospital administration. Obviously we want doctors to understand biology. That’s a given. But we want more than that. We need more if a doctor is going to provide wise guidance regarding difficult decisions. When a patient is at a true fork in the road, biology alone will not help with which way to go. A doctor’s imagination needs to encompass more than the molecules going round and round in the body. We need to ask, Who is this person? What do they care about? What are they afraid of? What do they hope for? Do they have a goal that might make a difference in how I advise them at this crossroads? Too often doctors’ imaginations don’t reach far enough in large part because of the way doctors are educated.
Lynch Schuster: How do we train doctors, and how can we do better?
Barfield: In medical school you start with one patient, who is already dead: the cadaver in anatomy classes. You spend hundreds of hours learning where all the pieces of the body are. Then you go on to physiology and learn what it looks like for those pieces to be moving in the right direction. Next you study pathology, in which you learn how pieces can move in the wrong direction or stop moving at all. Then you go on to the hospital, where you spend two years on the wards learning medical and surgical approaches to making those pieces move again in the right direction. And then you graduate. You have a medical degree. The problem is that you have learned little about communication, decision making, and ethically complicated situations. I spent far more time memorizing the names of enzymes than I did learning about the impact of socioeconomic conditions on my patients’ health and ability to follow through with therapies. I forgot most of the enzymes a month after I took my board exams, but every day I have patients who get sick or stay sick because they can’t afford to look after their health or can’t find proper resources where they live.
Here is a bit of heresy: If I could redesign medical school, I would stop having everyone memorize what can just as easily be looked up on a smartphone when needed. Then I would use the time saved to focus on understanding patients.
We live in an age in which nobody can memorize all of the relevant information anyway. William Osler, one of the fathers of modern medicine, was probably able to memorize everything that doctors knew in his day. Today I think he would focus on the interaction of biological systems, creative problem solving, effective approaches to information mining, and communication — especially communication, because it influences decision making. If, due to poor communication, we make a decision that does not fit a patient’s goals, then it doesn’t matter how good our medicines and techniques are; we are not serving the patient. It’s like taking a left turn when you should have turned right. Even if your car is a wonder of mechanical engineering, you are going in the wrong direction.
Some medical schools actually are overhauling their approach to training doctors, but there is a lot left to do.
Lynch Schuster: Meanwhile we patients are trained to expect doctors to fix us, period.
Barfield: That’s true. And it’s not just doctors and patients who need to change their views. It’s also nurses and administrators. Then there are the risk managers, who help to prevent errors and avoid lawsuits, and the respiratory therapists, and the social workers. And there are the people in housekeeping, who are invisible. The education — or miseducation — of doctors has to do with the history of this hierarchy.
If I write an order for chemotherapy that will take twelve hours to administer, a nurse will be with that patient for those twelve hours. That nurse will have a different experience of that person than I do. Obviously, as a doctor, I cannot spend twelve hours with every patient, but I can deepen my sense of being part of a true interdisciplinary medical team. I can rely less on hierarchy and more on a round-table approach to problem solving. The nurse has a seat at the table, bringing crucial insight from that twelve-hour period at the sick child’s side. The family should be at the table, too. The chaplain should be at the table. It seems like an obvious approach, but it’s the exception rather than the norm.
In many cases the medical system is functional. I have broken several bones, and each time, when the doctor takes my crooked limb or extremity and makes it straight again, I am grateful. That doctor’s training worked just fine for broken bones, but many medical situations are vastly more complex, and the goals of care are not so obvious. That is when doctors can start to feel lost, and if they feel lost, they fall back on what they were taught to do: respond with medical interventions.
We train doctors this way for a benevolent reason: so that they can serve suffering human beings. But there is a problem when doctors, who are at the top of the medical hierarchy, lack the skills needed to help a patient and his or her family make complicated decisions. Actually, these days risk managers and hospital administrators are at the top of the hierarchy, and physicians are becoming more and more a means of avoiding lawsuits and making money. Still, the medical team looks to me for a plan; the patient looks to me; the family looks to me. I’m there to manage the crisis, which, in the case of a child facing the possibility of a very short life, is also an incredible mystery. And the tool I’ve been given to address this mystery is a scientific, reductionist approach to disease. I’ve been given a definition of life as matter in motion, and I’m tasked with keeping the matter moving. That is too thin a gruel for someone who is expected to stand on the threshold of mystery and lead. It results in doctors feeling incompetent, which they handle by forcing everyone else to use the language of biology, because it’s what makes them most comfortable.
Lynch Schuster: How does the suffering you witness affect you as a physician and as a human being?
Barfield: It’s one thing to know that children die, but it is another thing, day in and day out, to stand beside a child who has cancer, especially a progressive cancer.
This work has changed my approach to my own mortality. It’s easy to slip into a sense of being entitled to 85.6 years, or whatever the average is for a man like me. It’s easy to think we deserve that. But when all your patients who die are children, it dispels the illusion that we are guaranteed even one more day. That requires a transition that is not always made gracefully by people in my field — certainly not by me.
Death is not the only form of loss that I bear witness to. Some of the chemotherapy I give makes girls infertile. Some of the cancers I treat require that I cut off a fourteen-year-old soccer player’s leg above the knee. When you are a teenager who has to show up at the prom bald, that’s a loss. When chemotherapy leaves you vomiting twelve times a day, that is a loss. All these losses lead to distress and anxiety, but they also present opportunities for courage. They push people to acknowledge their frailty, their vulnerability.
When I walk into a patient’s room for the first time, I’m faced with an individual and a family in a crisis. I don’t know them yet. I know everything in their electronic medical record: their sodium and potassium; their creatinine and their glucose; their calcium, phosphorous, and magnesium. I know what their X-rays look like, their CAT scans, their MRIs. But I don’t know anything about what it is like to be them. And, truthfully, I can probably cure the child’s cancer without knowing that. But if I do, there is a whole world I am missing, to the detriment of the human being in front of me and of my own humanity.
As a physician I am granted an almost priest-like authority, and I can use that authority to translate the patient’s experience into biological language. But that’s a sadly diminished way to respond to a stunning human drama. It’s not just for the sake of the patients that we need to rethink this — it’s for the doctors, too.
Theology offers a better approach to mystery, if for no other reason than because theology takes seriously humanity’s cumulative wisdom about the mystery. Yet the divinity schools and the seminaries, the philosophy and literature departments and faith communities, are often kept far from the dramas inside the hospital. Part of the reason, of course, is out of respect for a patient’s privacy, but it’s also because we choose to hide the sick and dying rather than invite them to be among us.
Lynch Schuster: What do you hope that your theology students take away from your classes?
Barfield: People come to my class with their own ideas about God. They don’t say it this way, but they often think of God as another tool in the healing toolbox, along with doctors and chemotherapy.
When a loved one dies, families can understand that chemo and the doctors failed, but God? He was supposed to be the backup plan. God is how they avoided being paralyzed by fear when the machines and medicines weren’t working. But when God doesn’t work — that isn’t supposed to happen.
I had the same experience myself when I was doing bone-marrow transplants for two children with neuroblastoma. The treatment was their last chance, and it seemed to be working for both of them. Then the first one died of complications from the therapy, and a few months later the second, who’d appeared to be cured, died of a horrible pneumonia in the ICU. She died under my hands as I pumped on her chest, begging her to come back. I walked out of that room as defeated as I have ever been in my life. I wasn’t even cursing God. I’d just stopped believing.
But I kept going to church, and when I’d take the Eucharist every Sunday, I’d catch this glimmer of something I’d once recognized. And then it would be gone, and I’d be back to being unable to believe.
Over the course of a year my faith in God began to return, but in a different form. I’m still an atheist in regard to the God I stopped believing in. That image of God had turned into an idol that had become too small, that could not be balanced against the reality of one kid dying of cancer or thousands dying in war.
Lynch Schuster: So what’s your image of God now?
Barfield: The short version is that I am more like Thomas Aquinas, who considered God to be the most incomprehensible of all the things we seek. An infinite God will never be known by me, because I am finite. But I might be able to grow. I no longer think that we are made for permanent harbors or final, blissful, static perfection, but we can change and move toward goodness as we grow in our ability to recognize it.
For Aquinas everything that is good, beautiful, and true finds its ground in this unfathomable God, and every exploration of goodness, beauty, or truth is an exploration into God that helps you comprehend more. But you never stop growing in comprehension, which is why God is incomprehensible. Aquinas said that in this life the deepest thing we can know about God is that we don’t know what God is.
I’m excited that I don’t know what God is. Now I want to pray, because who knows what might happen? Now I want to meditate, because who knows what might show up? God is and always will be untamed by my imagination. I can pray wildly now.
Lynch Schuster: When I was sitting in on one of your classes, someone commented that the hospital has become a modern temple, a holy place, but one that does not seem to serve people well: not the people who lead the system, nor the people who rely on the system.
Barfield: I am not sure I agree with the comparison of the hospital to a temple. The hospital is often a business, and there is not much room in business for the holy. That said, many holy events, such as births and deaths, occur inside hospitals. What bothers me is that these holy events are largely isolated from the communities that actually know what holiness is. But that is what we as a culture have asked of our medical institutions. We want a medicine that fixes every problem inside our bodies, no matter the cost. We often die tangled up and sedated in an ICU because this is what we demand: the illusion of control, which snuffs out mystery and excludes the many other resources we need to draw on as we approach the end of our lives. We have a need for other people, for community, for the earth; we need answers to questions like “Why am I sick?” and “What does this mean?”
You are going to die, and you don’t want to. You want to control it. And your desperate desire to control it causes suffering in ICUs, billions of dollars spent, and the separation of patients from their communities. The financial cost of medicine is probably the consequence we hear about the most, but a confused elderly man who ends up dying in the ICU instead of in the house that holds his memories — that’s a cost, too, and a big one. We doctors need to consider what we are doing when we show up to care for frightened beings who are facing their own mortality.
I think of each day as a gold coin that you are required to trade for something. You’ll never get that coin back, so whatever you trade it for had better be worth it. You also don’t know how many coins you have left to trade, and you don’t know what will happen when your bag is empty: the other side of death, if there is one, is a mystery. We can’t talk about this drama in terms of what’s accessible in a patient’s electronic medical record.
Because our time is limited, our relationships with other people are important. Maybe I need to leave a bad relationship, because it’s harming me and time is short. Or perhaps I need to forgive someone, because time is short, and he or she needs to be forgiven. Or maybe I need to partner with someone new, because time is short, and there is something good and beautiful that person and I can bring into the world. The recognition of mortality presses us to think of our lives as precious, but the illusion that we are in control undercuts that.
What if I enter a patient’s room, and instead of walking in as the great authority, the tenured professor at Duke who can give you hope because I can control your disease, I say, “You know, you’re in bed right now, but one day it will be me. I know that we will both die, and I don’t know what to make of that, but I am here as your servant.” I am a guest in my patients’ lives. “Thank you,” I like to say, “for inviting me.” Sure, I can do the lumbar punctures, the bone-marrow aspirations, the chemotherapy, the reading of MRIs. That will all be the same. But the sense of what a life is, of what my vocation is, of the language I should use when I meet other human beings in this complex cauldron called medicine — all that will be different.
Lynch Schuster: That sounds good, but how will patients respond to a doctor who is more approachable and human? Maybe they don’t want to be on equal footing. Maybe they want the doctor to be the authority.
Barfield: Well, sure, especially if someone is coming toward you with a speculum. If you’re going to have a Pap smear, you don’t want it done by someone wearing flip-flops and beads who calls you “dude.”
Lynch Schuster: Exactly. So do I want the most technically proficient person, or someone who is just average technically but has a great bedside manner?
Barfield: It doesn’t have to be a choice. My love of the people to whom I am offering my service motivates me to be the best doctor I can. To me technical excellence and competence are nonnegotiable — not because we are avoiding risk or building the hospital’s reputation or making more money, but because that is how we serve; that is how we express our love: by doing the best we can.
In return, because this is a reciprocal relationship, I need the patient to acknowledge that I’m human. If I’m a surgeon who has done twenty thousand bypass surgeries, it is still possible that when I open up your chest, something may go wrong. Early in my career, one of my biggest personal failures grew out of my inability to admit that I couldn’t cure a patient. I would ignore the obvious fact that my patient was going to die. I would offer experimental research trials or find a laboratory value that was a little better than it had been the day before, and I would act as if that offered hope. I would do anything not to say, “You are going to die from this, so if you have things you need to do, do them now.” My patients and their families helped me overcome this failure. I learned from them that there is a real cost to not telling someone when the end is near. Those patients missed the chance to do what they wanted with their final days because I didn’t know how to tell them the truth. They suffered in ways that they might not have. They died on ventilators instead of in their own beds. But I learned, and I’m learning. I’m trying to do better.
Lynch Schuster: When you call yourself a “servant,” I think of how hospitals now are rated and penalized based on the satisfaction of their patients.
Barfield: Right, Press Ganey scores. We hospital staff are here to serve you, and if our service doesn’t hit the mark, we might drop in the ratings. But true service has religious undertones. Religious practices allow for the imperfection of the servant. They recognize the value of simply being present to a suffering and lonely person because it is fitting that I would serve you and stay with you when you are afraid or in pain. It seems right that, if I have a gift to give someone in need, I should offer it. It seems right that, when your life is falling apart, I would be your friend. Without that, we will be back to biological reductionism, to molecules moving in the right direction. Something important will have died.
I do know doctors who view their practice in terms of love. Where I went to medical school, there was a professor named Sunny Anand, who was a Sikh. What I didn’t know about him at the time was that he had dispelled the common misconception that newborns had underdeveloped nervous systems and therefore couldn’t experience pain. Until Sunny published journal articles that helped transform the way doctors thought about neonatal pain, surgeons would open up infants’ chests and do heart surgery and then sew them back up, all without anesthesia.
Twenty years after medical school I was at a pain conference in Minnesota, and Sunny was one of the speakers. He began his talk with a slide image of a guru from India. For ten minutes Sunny spoke about how this man had taught him the importance of love. All our research into understanding pain, all our work to help people with pain, Sunny said, makes no sense unless we begin with love.
What he said may not change how I choose an antibiotic or how I calculate a dose of chemotherapy, but it absolutely changes the attention I give to the people in front of me.
Lynch Schuster: Do you think you can teach medical students empathy?
Barfield: I think humans are inclined to feel empathy, but empathy can be crushed. Something seems to happen in medical school and residency that dulls our sense of empathy. It’s dulled by discussing illness and intervention in ways that don’t acknowledge patients and physicians as people. It’s dulled by the volume of suffering encountered in the course of training. It’s dulled by mere fatigue. I was always more capable of empathy at the beginning of my shift than I was thirty-six hours into it.
So the question is not “Can empathy be taught?” The question is “Can it be recovered?” The answer is yes. Physicians can remember what it is to be human. If we heal doctors, their empathy can return.
The problem arises when the circumstances in which we experience empathy restrain our ability to respond to others. Too often we’re forced to respond with limited tools, because institutions that use a surface rhetoric of compassion are really focused on money, risk avoidance, liability, and reputation.
Take social workers, for example. Everyone in medicine is talking about cutting costs, so when a social worker leaves, instead of replacing that person, the hospital redistributes the work. At some point this approach makes it difficult to help our poorest patients. Needs that are directly related to the patient’s well-being end up being ignored. Seeing that happen is fatiguing. If a social worker’s patient load gets heavy enough, there is not enough time to document what he or she has learned about each patient. So either some encounters go undocumented, or the notes and e-mails are written after hours and on weekends, just to catch up.
Yes, there is a short-term financial gain to not hiring replacements, but if you end up with higher employee turnover, the cost of training new hires eats into that gain. And ignoring socioeconomic factors that contribute to disease leads to patients with uncontrolled diabetes, hypertension, and so forth, which leads to more emergency-room visits, which eats up yet more of what you gain.
As for institutions, it’s hard to swallow arguments about financial constraints when nonprofit executives get half- million-dollar bonuses in the middle of an economic crisis that is supposedly so terrible the guy cleaning toilets can’t get a cost-of-living raise.
We also aren’t paying enough attention to the aesthetics of what we are doing. It matters how we arrange the spaces in a hospital, or how we reason our way through a complex problem, or how we use language. Look again at William Osler: He loved literature. He said that it is more important to know the person who has the disease than to know which disease the person has. There was little physicians could do for a patient, he felt, until they saw how the patient lived outside the narrow realm of the hospital. Osler pitied physicians who didn’t read literature, who didn’t learn to listen to the inside world of others. As a doctor, you need to appreciate patients’ stories.
Lynch Schuster: We spend a huge amount of money on healthcare in this country — nearly 20 percent of the gross domestic product. And aging baby boomers are going to drive costs even higher. We soon won’t have enough doctors to care for all who are in need. And if we keep funding healthcare at this rate, we’ll be unable to pay for education or infrastructure or public works.
Barfield: Everything will diminish. At some point we will have to ask: How much are we willing to sacrifice to keep the blood going round and round in a person’s veins and the air going in and out of his or her lungs? For the cost of a few additional months at the end of my life, I could fill my days now with art and education. At some point we will have to acknowledge that trade-off.
If I prepare for my mortality by surrounding myself with people who know what matters to me, then I can say no to expensive and painful end-of-life interventions that will take away something I care about, such as being at home when I die, or seeing my grandchildren, or finishing a painting. If we don’t talk about death, then fear will drive the conversation.
Lynch Schuster: When you get a call while on service at the hospital, what might you be asked to do?
Barfield: When I’m on inpatient service, I’m in charge of all the new patients who present with cancer, which is a difficult transition for a family. A few weeks ago I got a call that a five-week-old had arrived in the emergency room with a white-blood-cell count of six hundred thousand. For comparison, yours is roughly ten thousand. So I turned the car around and started giving instructions right away, because that baby could have had a stroke.
The team and I worked for hours to pull this child back from the brink. Meanwhile the family had to switch from celebrating the arrival of a newborn to accepting the fact that the new baby had leukemia.
Lynch Schuster: So did the five-week-old survive?
Barfield: The 90 percent cure rate I discussed earlier for acute lymphoblastic leukemia is for kids between the ages of one and ten. Infant leukemia is a different beast. The cure rate there is below 50 percent. If the infant has other risk factors, such as a genetic change inside the leukemia cell, it’s even harder to cure. And this baby had all the risk factors. But, over the course of the week, we got his blood-cell count down to almost normal. The baby started eating and became happier and healthier. Next he will go through a couple of years of chemotherapy.
Lynch Schuster: There are courses that teach doctors how to break bad news to patients. It must be so much tougher when you are giving bad news about the health of a child.
Barfield: When I break the news to a mother and father that their child has cancer, most of the time I can also include information that is comforting. Many people hear the word cancer and immediately think it’s a death sentence, but that’s not true anymore. When a child relapses, however, the situation is quite different. Then the cancer is much harder to cure.
It’s hard to know if and when to give up hope. Almost all parents continue to hope until the end that their child will experience the one-in-a-million cure. If it were you, and you read an article about a child in Fiji whose cancer was just like your child’s cancer, and he’d been cured by some local doctor using an alternative therapy, you’d be on the next flight, right? But that kid in Fiji is not your kid. The variables are endless. You don’t know what made the difference. Anecdotes can be so misleading that way. That’s not to say alternative therapies can’t be beneficial, but we need to know the whole story in order to grasp the cost. Suppose you fly to Fiji to pursue a treatment. You will leave behind everything familiar, everyone you love, and be completely alone in a strange place. Your child will have to learn new systems, doctors, and nurses, and spend whole days undergoing treatment rather than doing what he or she loves.
I recently treated a seventeen-year-old whose cancer had spread to his brain. This is a cancer with a zero percent chance of cure. The mother was looking at Phase 1 experimental treatments in other cities. The aim of a Phase 1 study is to figure out how much of a drug you can give a person before causing unacceptable side effects. They don’t even know yet whether the drug will do any good. I pointed out to the mother that if the experimental treatment didn’t work — and it probably wouldn’t — then her son would have traded his few remaining weeks or months at home for more time in a hospital. Maybe there was something else he would rather do?
The boy said that was exactly what he was worried about. The cost to him of losing that time with friends and with his girlfriend was too much. He needed to close out his life, to give it a beginning, a middle, and an end. He didn’t want more chemotherapy either. It would make his beard fall out, and he’d just grown one for the first time, and his girlfriend liked his beard. So that was an enormous cost to him.
Not counting those costs is one of the biggest mistakes doctors make when we give a patient advice.
Lynch Schuster: What did his mom say? I know the dynamics between teenage boys and their moms. I have four sons.
Barfield: She was a wonderful person who adored her son. And she wrestled with giving this seventeen-year-old the only adult decision-making power he would ever exercise. It was his body where this drama was being played out. He’d already had an amputation. He’d had chemo. He’d given up a lot in an attempt to be cured. He had sacrificed and lost. And he knew how it felt to have a bag with a hazmat warning hanging from a pole beside him while its contents dripped into his body and everyone else handled it with gloves. He knew what it was like to be nauseated and to have sores in his throat.
His mom believed that the experimental treatment might give them more time together. But she told him it was his decision, and she would support any decision he made. And he chose not to have the treatment.
Lynch Schuster: When a friend of mine died of breast cancer, I felt that the oncologists did not tell her the real consequences of whole-brain irradiation, which had devastating effects on her cognitive ability. She was a brilliant woman, but I think her hope for a longer life blinded her to the possible side effects. It was heartbreaking to watch her die.
Barfield: The oncologist may not have thought about the side effects of that treatment either. If you are trained to think that life is molecules in motion, then you are compelled to tell your patients they should try anything to keep the molecules moving.
We can teach physicians to have these conversations and to tell the truth. We can help them become more attuned to the family’s desires. It is difficult to offer information clearly, however. If you say, for instance, that there is less than a 10 percent chance of a trial curing the child, people will hear that there is a 10 percent chance of their child being cured, which is not at all what you’ve said, because a zero percent chance is also less than 10 percent. If you think that a patient will not be cured, you need to say that instead of hiding the truth behind optimistic language. Otherwise patients might act on false hope.
Lynch Schuster: When you’re dealing with children, they often don’t have the autonomy to make medical decisions. It’s ultimately up to the parents. How do you balance a child’s and a family’s wishes?
Barfield: I don’t think in terms of autonomy. When I walk into the room to say that the cancer is back, I think about how to shape the next hour of conversation so that the family can best navigate this impossible place.
I have had seven-year-old patients with leukemia who have been through multiple chemotherapy regimens and have seen their friends in the pediatric-oncology ward die of cancer. I will listen to what they say about one more round of chemo, because they know what to expect. What that child says governs the conversation. She might say, “I want to go home.” She knows what she wants.
The biggest obstacle to helping a family get to where they need to be is often the terrified parents. There is nothing they would not do to try to turn the ship around — donate their bone marrow, their organs, anything. The parents’ terror is a barrier to helping the child. If there are differences between what a mature child wants and what the parents want, it can be challenging, but for me it is not a question of legal autonomy. It is how a family makes peace with the truth that is in front of them.
I try to help parents in these situations understand that maintaining a decent quality of life for their child is doing something. It is helpful. It is a powerful expression of love. Some parents do reach a point where they cannot bear any more suffering for their child; where they say, “This is worse than losing him.”
Lynch Schuster: But you cannot offer aid in dying because it’s illegal in North Carolina.
Barfield: I won’t and don’t kill people, but if a dying patient asks me to relieve the pain, and that means increasing morphine despite the risk of slowing down that person’s breathing, I will do it. I have given high doses of Toradol to relieve pain, even though it can hurt the kidneys. I have given long courses of propofol, even though it can hurt the heart, simply because it was the only thing that relieved a patient’s agony at the end of life, and relief was all the patient asked for. Until you are dead, you are alive.
Lynch Schuster: It’s like the quote by Dame Cicely Saunders, the founder of hospice: “You matter because you are you, and you matter to the end of your life.”
Barfield: Right. The last hour of your life is still an hour of your life. I’ll ask patients in my care, “What is making it most difficult for you now?” And maybe they’ll say they can’t breathe, or that the lump in their leg bone hurts — and I will help them with that. If I have to sedate them to the point where they go to sleep, I’ll explain that consequence. Some would rather be awake and in pain to talk to people. Maybe we’ll come up with a plan to let them get some sleep at night. I’ve had patients for whom, once they are no longer in pain, death follows quickly. There is something about agony that keeps dying people alive. I’m not sure why, but I have seen it over and over. The untreated pain keeps them here. Take away the claws of pain, and they are free.
Lynch Schuster: The United States ranks high among countries in terms of what we spend on healthcare, but for many outcomes we are near the bottom. I wonder how much of that might be attributed to the way doctors are trained in our system.
Barfield: My second-year medical students, in their clinical rotations, sometimes feel themselves being pulled in a direction they would not naturally migrate toward. They see systemic problems that seem intractable, and they’re not sure how to respond to them. They have been on ER rotations and seen the same elderly man come in over and over with out-of-control diabetes, and now he has a gangrenous foot. They know the man doesn’t need more medical information — he needs a social worker to help him get more resources so he can control his disease. But the social-work budget is being cut. These students have been on ICU rotations and seen patients who are dying, and intensive care cannot do anything but prolong their dying, and yet the doctors won’t stop performing procedures, checking labs, and documenting vital signs. The question on the tip of everyone’s tongue is “What are we doing?”
The students want to use the tools of medicine to fix the problem, but those tools are part of the system that created it in the first place. We have to find the solution elsewhere, in another type of imagination.
Jeffrey Bishop, who wrote The Anticipatory Corpse, says medicine has become a kind of power that shapes policy and the cultural imagination. For example, we now have tests that can determine brain death. We can say of a person whose heart and lungs are still working that he or she is “brain-dead.” It used to be that you sat at the bedside of your loved one, and when their heart and breathing stopped, they were dead. Now we have redefined death to mean the death of the brain.
This has become an important issue in organ transplantation. If we equate brain-dead with dead, we can take organs from donors whose hearts and lungs still work. Bishop doesn’t state his stance on the issue; what he is trying to get at here is the fact that medicine allows these kinds of cultural shifts. In this case, for doctors to pursue their goal of keeping the molecules moving in the right direction for patients in need of organs, we changed what it means to be dead. But we didn’t examine the philosophical ramifications before we altered the definition.
Lynch Schuster: Medicine is such a closed society. If you don’t speak the language, it is hard to enter it, much less reform it.
Barfield: Those of us on the inside need to model the changes we want to see made. We could start by showing med students what it looks like just to be quiet and listen to patients as they try to say what matters in their lives. Model the habit of reminding patients with chronic diseases that they are more than their disease, which is easy to forget. Model the habit of sometimes saying of a patient, “What a wonderful person. We were lucky to meet her.” Model what it looks like for a physician to develop a relationship with a chaplain, and then to lean on that chaplain during difficult conversations, and even step out of the way so that the chaplain can take the lead. Too often doctors want chaplains in the room only after a patient has died, rather than treating the chaplain as part of the team.
We can develop new norms in medicine. Think about how the antismoking campaign changed public behavior. It took years of work at every level: policy, business, medicine, culture. But when it finally hit the tipping point, every institution prohibited smoking. If I lit up a cigarette on a plane today—
Lynch Schuster: The other passengers would wrestle you to the floor as if you were a shoe bomber.
Barfield: [Laughs.] Even if you aren’t a policy person or a mentor, if you model change, you will create it at some level — and you will change. That is so important for doctors, as we see high levels of depression and suicidal ideation among physicians. A career in medicine ought to be an amazing life of service. Maybe we need to rethink what we are asking of people when we want them to stay with us while we get sick and die. Maybe evaluations based on revenue generation don’t quite get to the spiritual core of what we need our caregivers to do.
Lynch Schuster: You’ve had your own brush with serious illness. How has that shaped your practice?
Barfield: Sixteen years ago I had invasive melanoma on my hip. One morning my wife, Karen, asked, “What’s that?” while I was shaving. “I don’t know,” I joked. “Probably melanoma.” Karen called me later that day and said, “Your dermatologist appointment is at 2:30 on Tuesday.”
The dermatologist said she didn’t think it was anything, but she took a biopsy anyway. She called me that night and said it was an invasive melanoma.
Next I went to an oncologic dermatologist, who said it was astounding how deep it was, given the small diameter. I thought, Oh, shit.
At that point I wasn’t trained as an oncologist. I was a pediatrician studying philosophy and literature and working in emergency rooms on weekends.
The dermatologist didn’t see evidence that it had spread, but he recommended a wide incision. We all knew that if it had spread, they wouldn’t have any treatment to offer me. I had a newborn and a toddler, and I thought, Oh, my God, I might die. I remember looking at my toe and seeing a dark spot under the nail and thinking, That’s it. It’s metastasized. But it was just a little hematoma. I actually went to the dermatologist to get him to confirm what it was, even though I am a physician, because the stakes were that high and my judgment wasn’t clear.
It was only after five years that I stopped checking every new spot on my skin.
Lynch Schuster: Some religious people are pushing an antiscience agenda. Do you want to be in that tent?
Barfield: I don’t mind being in the same tent with anyone as long as we are debating. I teach courses in theology and science because so many of us — not just right-wing religious people, but also scientists — have a monolithic view of science. They don’t realize how difficult it is to say what science is. I begin those classes by telling students that there are ways to define science that allow us to explore the world in a beautiful but pragmatic way. The best philosophers of science realize that if you form your theory of knowledge in a way that excludes the possibility of genuine religious experience, then you exclude a lot of the best science. There’s a book by Thomas Kuhn called The Structure of Scientific Revolutions, which shows how someone like Einstein, when he is on the cusp of a world-changing discovery, thinks more like an artist than like a scientist in a laboratory using the accepted scientific paradigms to incrementally “advance” the field.
Lynch Schuster: You are also a novelist, which requires a rich imagination. Does it also require imagination to be a physician?
Barfield: Someone once asked poet William Carlos Williams if he wished he hadn’t practiced medicine so he would have had more time to write, and he said no; for him the two were the same thing. People don’t pick up on the imagination of medicine in part because of the way medicine is taught. If you want to be a great doctor, you have to be able to imagine the worlds of strangers. I can teach a smart eighth-grader how to follow the research protocols for cancer treatments, but anyone who interviews with me for medical school needs to show me that he or she can at least enter my world and get to know the reality of a Southern doctor who wants to write novels, play his guitar, and be forgiven. I am not kidding.
Lynch Schuster: My former primary-care doctor was a young woman who limited me to three symptoms and ten minutes. How was I to know which of a half dozen symptoms that I was experiencing mattered?
Barfield: That approach is not going to get you inside the world of the patient. Creating worlds in novels is similar to being open to the strangeness and wonder and surprise of the person in front of you.
Lynch Schuster: It must also teach you that the life you imagine a person to be leading might not be his or her life at all.
Barfield: A real privilege of medicine is the chance to see that the world is not always what I think it is. Imagination, in medicine and in writing, allows us to expand our horizons, to open ourselves to possibility. When I am cut off from patients by boundaries, by time, by structure, by the white coat, then I am cut off from imagination. If I put you in a gown and take away your sense of place, person, and agency, then my agenda is all we are going to talk about.
This is where physicians feel the inauthenticity in the profession. Coming in with that power differential between doctor and patient, and all the particulars shorn from us both — that is the opposite of what healing is about.
Of course, some people prefer that method: it’s cleaner, and you might get out of the hospital faster. But that seems to me to be a drab way to live. In the long run that approach causes physicians to atrophy. It turns you into the kind of doctor who can be in the presence of pain, suffering, fear, and grief and remain professional and aloof. When you get to a place where nothing moves you, something has died.
Medicine is all story. It is dense with story. That’s why Anton Chekhov, the writer and physician, was such a master storyteller. You should read all of Chekhov before you go to medical school.
There used to be a sense of beauty in medicine, of form and harmony. Now you have to read books that are a hundred years old to find it. Doctors have forgotten this aesthetic sense. Too many of us no longer see the beauty in the face of a ninety-year-old woman who comes in clutching the picture of her recently deceased husband.
You have to notice beauty when it appears. That means you have to show up and shut up. If I could give just one piece of advice to all medical students, I would say, “Show up completely, and then shut up for at least two minutes while the miracle in front of you tells you who they are and how you can help them.” If every doctor did just that one thing, it would change medicine.