Madison was never expected to live this long. The doctors had told her parents she would probably die at birth. Surprising everyone but her mother, she seized and trembled, and refused to suckle—but she didn’t die.
Madison never learned to walk. Her four limbs were spastic. She remained small for her age, and she never learned to speak, not even to say Mama or milk, or no. But she saw and experienced many things beyond seizures, infections, breathing and feeding tubes; beyond Christmases and Easters and birthdays, and the everyday intimacies of childhood. She was her mother’s joy, and knew a fierce and indelible love, breathed over her in a nightly vigil. It imbued Madison with the quiet beauty of a survivor. Whatever trials she endured, there was a sense that she was lit from inside by something sacred.
Still, there were the hospitals. The familiar scene, where doctors told Madison’s mother that her daughter would not survive, played out over and over as the little girl got older. She would get sick—her pulse quickening, fever rising, skin becoming clammy—and then she would get very sick, convulsing with seizures, rapid breath shaking her thin frame. But then, just when she was so sick that everyone thought it would be the final sickness, she would get just a little better. Each time this happened, Madison’s mother, living in ambiguity since her daughter’s birth, would trust the doctors a little less.
By the time she got to the hospital where I was a doctor, Madison was almost eighteen. This time she really was dying. Sent to our regional referral center by her well-meaning rural physicians who thought they had nothing left to offer, Madison was barely responsive. The sliding-glass door of her hospital room framed a scene that was, at first glance, distinctly modern. State-of-the-art monitors spewed data, and machines pumped tube feeds and broad-spectrum antibiotics into her body. But Madison’s mother, keeping watch by the bed, her face bent over the curled body of her daughter, was a timeless image of suffering, like a stoic pieta. Except that she bore no trace of the placid, limpid resignation the Holy Mother always seemed to wear. She was unbelieving, and angry.
Your daughter is dying, the doctors at our hospital told Madison’s mother. Doctors always say that, she responded.
Death has always been a part of the hospital, but it has not always been its enemy.
The earliest Western hospitals were Christian inventions. Jesus had warned that the needy in society—those who were hungry, without shelter, in prison, or sick—were manifestations of Christ on earth: Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me (Matthew 25:40). A combination almshouse, hostel, and infirmary, these early hospitals were founded and staffed by believers. The sick and destitute who came to them were “the least of these” from the Gospels, and caring for them was a way of caring for Jesus himself.
When Christianity became the state religion of the Roman Empire, construction of hospitals was formalized, and the first council of Nicea in AD 325 ordered a hospital to be built in every cathedral town. And though the black-habited clergy who staffed these institutions understood caring for the body to be a critical part of Christian charity, their primary concern was what happened after death. Confession and communion were as important as surgery, holy water and communion wine more critical than medicine, because the ultimate goal was salvation of the soul.
In modern hospitals, our dead are quickly whisked away to a basement morgue, but medieval monks carried the dead to the covenantal chapel, the heart of the medieval hospital. These hospitals were often combination ward-chapels, with the beds in full view of a more sacred space. The photographer Grace Goldin describes a prototypical ward-chapel at the thirteenth century hospital, Hopital des Fontenilles in Tonnerre, France as “doctrine translated into architecture.”
The long rectangular ward had a barreled roof covered in wood. Stark walls were punctuated by windows, but otherwise the space was dark. Then, at the far end of the ward, a triptych of arches cut through the darkness—the entrance to the chapel. The largest central arch stretched from floor to ceiling in a portal of light. The original glass was colored so that the sun would scatter off the bright stone ceiling in a warm, otherworldly rain.
The centerpiece of the whole hospital was an altar, framed by marble pillars, where bedridden patients could see candelabras flickering in the incensed air. It was here that a priest in white robes, lit from all sides, would lift the host toward heaven, converting it, miraculously, into the body of Christ.
The architecture confirmed what everyone already knew: The most important function of the hospital was not the prevention of death, but preparation for it.
Madison had a brain injury at birth. Her disability was severe. As a doctor, I have taken care of many children like her, and their families. My colleagues and I see these patients at their worst, during terrible illnesses, tethered to hospital beds. We trespass upon their bodies with our tubes and needles and wires. We see them in pain, and try to help.
This mother is nothing like me. This child is nothing like my child, we assure ourselves. We do not want to see ourselves, or those we love, in their bent little bodies. Looking at our patients and recognizing their similarity to us is too hard, so we try to conjure explanations for how we are different.
Doctors know better than anyone that death is everywhere; danger is everywhere. But we still have an instinct to fight it, to use all the tools at our disposal to push back against its encroachment. In caring for our patients, we are inevitably thinking of ourselves.
The earliest Christians believed that the second coming was imminent. You know not the day nor the hour, Christ had promised. Perhaps because they were waiting for Jesus’ return and believed he would arrive any day, early Christians were notoriously unafraid of death. And so even as they faced brutal persecution, in this period Christianity was characterized by a fearlessness toward death so extreme that some historians have characterized it as “voluntary martyrdom.” It was epitomized by a second century incident in which so many Christians presented themselves for execution that, after sending a few to death, an exasperated Roman proconsul began turning them away, saying, “You wretches, if you want to die, you have cliffs to leap from and ropes to hang by.”
In the form of extreme fraternal charity, this attitude also extended to caring for the sick. According to one account of a plague in Alexandria in AD 203:
The most of our brethren…held fast to each other and visited the sick fearlessly… And they died with them most joyfully, taking the affliction of others, and drawing the sickness from their neighbors to themselves and willingly receiving their pains.…truly the best of our brethren departed from life in this manner.
The author of that passage, Eusebius, a Christian bishop, also remarked on the stark contrast between this Christian attitude and pagans’ deep fear of death and disease:
They deserted those who began to be sick, and fled from their dearest friends. And they cast them out into the streets when they were half dead, and left the dead like refuse, unburied. They shunned any participation or fellowship with death; which yet, with all their precautions, it was not easy for them to escape.
Early Christians provided charitable care for the sick and destitute even during times of plague, at great cost to themselves. They did so not only because they viewed the weakest as particularly deserving of care, but because of their different attitude toward death. These Christians were motivated by a distinctly religious sentiment: Jesus’ instructions to store up treasure in heaven rather than on earth. Eusebius, for example, speaks not of acceptance, but of “fellowship” with death.
There is a secular corollary to this idea. Mortality, and the awareness of it, are things all humans share. Whatever differences we may have, we’re all members of the fellowship of the mortal: Each one of us will die. People we love will die. And, if we live long enough, we will also, at least temporarily, experience disability. As Susan Sontag famously wrote, “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
But sometimes fear takes over, and we forget. This desire to deny our own vulnerability, and mark those with illness as somehow different from ourselves, has haunted humans for millennia. A significant portion of the book of Job is dedicated to a lengthy interrogation of what the protagonist, an innocent, must have done to anger God and bring on his terrible fate. Let us see how he deserves this, so we can reassure ourselves that we do not.
One might think that for physicians, things would be different. But daily confrontation with death and disease doesn’t solve this puzzle. Like everyone else, doctors hope the bodies we inhabit won’t ever fail us, even as we also know, deep down, that no one is safe. And so, we don’t offer fellowship. Instead we think, How can I prove to myself that this person could never be me, that this child could never be my child?
Constantine’s conversion to Christianity brought Roman imperial support to the early hospital. But after the fall of the Western Roman Empire in the fifth century, charitable work was left to monasteries and churches, and in western Europe the hospital fell into decline. For medieval Europeans, untimely death was common, illness ubiquitous, and suffering seen as a redemptive part of the human experience. When people fell ill, they were generally cared for at home, where a physician might visit, and daily care was provided by family members. But when travelers fell ill, far from home and the care that came with it, dangers lurked. In the age of pilgrimage, the revival of the hospital in medieval Europe grew out of an increasing need to tend to these strangers. They were called xenodochia and hospitalia, from the Greek xeno and the Latin hospes, which both mean stranger, foreigner, or guest.
By the eleventh century, pilgrimage was booming and desperate travelers were more numerous than ever. Europe was entering the High Middle Ages, a period of urbanization, economic change, and robust population growth. Three hundred years before the twin tragedies of the great famine and the black death, it was a time of relative peace and stability that made large-scale travel possible for the first time in centuries. The overland route to Jerusalem from Europe (cheaper and safer than a sea voyage) opened at the end of the tenth century, and similar changes in Spain made travel on the Camino de Santiago to the great pilgrimage site of the Cathedral of St. James possible. As travelers multiplied, hospitals once again proliferated, springing up at major pilgrimage sites and along the most traveled routes. In addition to care for the sick, these institutions offered general care for pilgrims and burial for the dead, and are sometimes also referred to as hospices.
The three great pilgrimage sites—Jerusalem, Rome, and Santiago de Compostella in Spain—each had corollary hospitals. The Guide du Pelerin, a guide for pilgrims traveling toward Santiago, remarks on their importance to pilgrims:
Three pillars…have been established by God in this world: the hospice at Jerusalem, the hospice of Mont Joux and the hospice of St. Christine, on the Somport. These hospices have been installed in places where they were necessary; they are holy places, houses of God for the comfort of the sick, the salvation of the dead and support to the living. Those who edify these holy houses will, without any doubt, and whoever they be, possess the kingdom of God.
The proliferation of charitable houses was so pronounced that some historians have called the High Middle Ages, “the age of hospitals.” Unlike the early medieval hospitals, which were run mainly by religious organizations, these new hospitals were endowed by religious and secular people alike. Hospitals were founded and supported by everyone from bishops and monastic orders to kings, lords, and municipal associations.
Pilgrims weren’t the only strangers in need of care. The High Middle Ages were a time of social change for Western Europe. Cities, which had stagnated since the fall of Rome, were once again rising to prominence as the population boomed. This period of re-urbanization brought economic prosperity for many, but it also ushered in epidemic disease and urban poverty, visible in a way that had not been true since the Roman Empire. Rural people often came to cities for economic opportunity, but sometimes they were driven there by great need, famine, or extreme poverty. Hospitals in urban centers were transforming from places that offered hospitality to pilgrims, to care centers for the new urban poor who were often separated from the safety net of their rural communities.
Madison was from a rural community, and she had a doctor there. Her mother had a network of close friends and family, people who loved and understood her and her daughter. But when their small local hospital had done everything it could for Madison, she was sent to ours, far from her home—a center with state-of-the-art medical technology and highly trained subspecialists. In terms of technical ability, it was superior, but Madison and her mother were strangers here.
We welcomed her with oxygen and anti-convulsants, and with the strongest antibiotics we had. We tried to heal her body. We did our exams, making rounds daily and nightly. We drew labs and analyzed the results. We gave increasingly strong medications and therapies, and consulted new specialists. But she was dying anyway.
There was a pullout couch in the room, covered in brightly colored vinyl. This was where Madison’s mother lay, where she lived now, sleeping then waking, fitfully keeping vigil over her daughter, night after night. Thin tubing hung above the hospital bed, dripping saline, antibiotics, and a bevy of other medications directly into Madison’s narrow veins through a catheter taped to her hand. I stood outside her room, my face lit eerily by the glow of the computer into which I typed my order: morphine.
Madison’s breathing had slowed, and kept getting slower. But we could not get enough drugs in her small body to control her pain without slowing her breathing even more. Madison’s mother had not signed a full do-not-resuscitate order, but she also did not want her child to be intubated with a breathing tube. Madison cried out. Her mother asked for a combination of morphine and Ativan: It’s what her doctor always gives her. It’s the only thing that works.
I tried to explain that the two drugs together would slow her daughter’s breathing even further, that we could not give them and keep her alive without a breathing tube.
Fine then, she replied. If you won’t give her both, then don’t give her anything.
Madison cried out again.
Medieval Christians viewed healing as a continuation of the legacy of Jesus and the apostles. With rudimentary medicine, they were able to clean wounds, provide adequate nutrition, and to some degree, relieve pain. They had the toxic but stupefying mandrake, henbane, and poppy, and after the Crusades, they had opium. A sponge soaked in opium would sometimes be held over a patient’s mouth and doused with steam, so that they could inhale the narcotic vapors.
Still, early hospitals had little to offer in the way of medical cures, and were often destinations of last resorts. Many patients came to the hospital in order to die, and care for the dying and the dead was a critical function of the hospital. In addition to “visit the sick” and “feed the hungry,” one of the Christian Works of Mercy that inspired the earliest Western hospitals was “bury the dead.”
Though it would not fully ease her pain, we continued giving Madison what we hoped would be just enough to keep her breathing. Later that night, her breathing slowed even more. This time, her heartbeat slowed as well—until finally, it stopped. But because the end-of-life decision-making document in place requested chest compressions and rescue breathing, we could not let her die. We pushed on her chest, forced her mouth open, and breathed into it with a bag and mask.
And we gave her Narcan, which overturns the effects of the painkilling morphine. When the action of the morphine was reversed, Madison’s breathing improved, but her pain came back too, all at once. She could not speak, but she writhed and screamed and stared, hot-eyed and angry. Her body was the size of a teenager’s, but her eyes were much younger, like a small child who does not understand why she is being punished.
I never wanted that, her mother said. She had not been ready to sign a do-not-resuscitate order, because she had not been ready for her daughter to die. But what we did to her daughter was the only kind of resuscitation we had to offer, and Madison’s mother had not wanted that.
She signed a do-not-resuscitate order the next morning, and Madison died a few days later. It wasn’t until Madison’s mother signed the order that we could finally control her daughter’s pain.
The salvation of patients was of such critical importance to the early hospitalists that today historians debate whether these institutions even belong in the lineage of the modern hospital. In addition to the sick, they tended to people who were poor, orphaned, hungry, or pilgrims, and, as one historian wrote, “The salvation of the body came a very poor second to that of the soul.”
But it wasn’t just the patients the hospitals were supposed to save. The historian Johnathan Sumption describes medieval Europe during the golden age of pilgrimage as, “a world obsessed with its own sinfulness.” We might see the motivations behind the earliest hospitals in the book of Matthew, where the red letters of Jesus’ words are brutally condemning:
Depart from me you who are cursed into the eternal fire prepared for the devil and his angels. For I was hungry and you did not feed me…I was a stranger and you did not invite me in…I was sick and in prison and you did not look after me.” (Matthew 25:41-3)
The care of sick strangers was driven by a penitential spirit. As a doctor working in a modern hospital, I felt it too. Being around so much death and suffering, and participating in it so intimately, left me with a feeling that needed attention: my own penitential spirit.
We’re not like Eusebius; we don’t want communion with death. To associate with it too closely feels like a kind of perversion. We try to deny death by pushing it as far to the periphery of daily life as possible, quarantining it away, as if it were a contagion.
The medieval hospital also feared death, but since death’s obliterative power was trumped by the threat of hell, the focus was on saving souls. The work of the medieval ars moriendi, the last rites that would ensure salvation, bore fruits that lasted forever. Today, we are obsessed instead with saving lives—and a life saved is only ever temporary.
You can only see a patient die so many times before you realize what medieval hospitals—with their garish displays of crucifixes and skeletons and deathbed conversions on display—knew instinctively. It’s not just the patients who live in the perpetual shadow of death. Suffering and death come for all of us eventually.
Perhaps that is why I found myself running away from the hospital every chance I could get. Sometimes it was to spiritual places: medieval pilgrimage routes, mountaintop Taoist monasteries. Sometimes it was the more mundane escapes: losing myself in distance running, drinking, serial romance. Anything that felt intense or, even if fleetingly, meaningful.
When our goal is preserving life, but there is no real hope of doing so, sometimes all we can do is cause pain, and prolong death. I’d seen this happen countless times, starting with the first patient I ever saw die. She was a charismatic woman in her sixties with a huge family, a lovely southern drawl, and failing kidneys. She died and was resuscitated three times in as many days, her ribs cracking during CPR, mouth frothing with blood, before her grieving husband finally said enough.
When a patient is dying, their families sometimes say, “Keep trying. Do everything. There’s nothing to lose.” But if, in caring for someone who we know is dying, we could shift our focus to that old idea of fellowship, the options for pain relief, spiritual support, and emotionally sensitive treatment unfurl into sudden vastness. After families have made their harrowing decision, they can find a kind of comfort. It is the “secret medicine” that the Muslim mystic Rumi wrote about, “given only to those who hurt so much they can’t hope.”
Pain control, feeding decisions, the ability to hold a loved one, to disconnect her from a prison of monitors so that she can leave the hospital, go outside, see the sun, drink water or stop being force-fed, stop having painful interventions, blood draws, chemotherapy, surgeries: In fellowship, we are free to give the kind of comfort and care in the face of death that humans have been giving for millennia—the kind that hospitals provided long before they had adequate medicine.
Though hospitals are no longer built with their wards in full view of an altar, chapels remain a fixture in many hospitals. Increasingly they are interfaith, with compasses orienting Muslims to Mecca, and cushions for Buddhist meditation. I was not religious, much less Catholic. Still, I had been to the chapel in the Children’s Hospital, adorned with colored glass and sacred hearts, more times than I could count. It was quiet, and beautiful, and mostly empty. And on nights like the one we resuscitated Madison, I often felt that space calling to me with an urgency I could not explain.
That night in the Children’s Hospital had changed Madison’s mother. Seeing her daughter in pain gave her the courage to sign the DNR. It had changed something in me too. While I had seen other patients die in pain—many because families or doctors weren’t able to admit that they were dying—this time felt different. Maybe it was because it all seemed so avoidable, or because Madison was a child, or because I was the one who wrote the order. But that night left me with a sick, weighty feeling that followed me for years. I stored it in my chest with so many other things I had done to children. I went into medicine to help them, and I put them in pain. I didn’t believe in sin, but as the images of my patients seemed to cling to me, that’s what it felt like.
The feeling stayed with me. I carried it for years across the country to a different city with a different hospital. That night with Madison, piled on top of so many others like it, had left me feeling so empty and wretched and broken that I wanted something more than a vacant sacred space. I wanted to confess. But I had no idea how.
It was Holy Week. Though the air was still stinging and icy, the trees were already starting to blossom. The heavy scent of pink magnolia was hanging in the wet air, the flamboyant pinks and reds and yellows opening in abundance. They were created that way: to make themselves vulnerable early. Every year in the cold spring, they expose their holy centers.
On a hill that loomed over the gray city sat a hulking cathedral, visible on clear days from most of the more populated areas. However secular the citizens had become, the massive building remained as it had always been; as the sun broke it seemed to shift from a posture of watchful judgement to mysterious welcome. Like so many pilgrims before me, I found myself walking. It was raining, and I was alone, heartsick, and lonely, with a feeling of being driven by something ancient. Sick, in a way, and a stranger to these people, and in need of their care.
A sign pointed to a small side chapel. Inside, the walls arched skyward, with white columns holding up a stone ceiling. There were high windows, like those medieval pilgrims could see from their beds in the ward-chapel. Soft light shone down on a stone altar where a priest could hold the host aloft.
It was an Episcopal chapel, and the priest was a woman. She sat alone, alongside the baptismal font. The silence was so deep that she heard me and turned even before I entered.
“Are you here for confession?”
The tightness in my throat was like a fist choking back a torrent of unwept tears, so I just nodded.
Rising, she walked towards me. It was so quiet that I could hear her white scapular rustling against her robes.
“I’m Mother Nancy.” She reached for my hand, folding it inside her own, “Your hands are cold,” she said, with a gentle concern so foreign that it broke me a little, and she gestured for me to sit across from her in a small wooden pew, in view of the altar.
There was no confessional. She simply shut the heavy wooden door of the chapel, sat across from me and lit a candle between us. The Book of Common Prayer was splayed open across the pew: “The Reconciliation of a Penitent,” it read. “The Penitent begins: Bless me, for I have sinned.”
“Is this your first confession?” she asked. I nodded my head, panicking, though it was right there, in a script, this ancient rite.
“Bless me, for I have sinned.” I said it. And by that time I was weeping.
When the part came about things done and left undone, when I had to call the sins by their name, things got more complicated. We couldn’t just get to the end, where the priest mother says, “The Lord has put away all your sins,” and tells me to go in peace, and asks me to pray for her, because she is also a sinner.
Because every time I told Mother Nancy something like, “I tortured that little girl, and she was dying,” she paused.
She said, “I feel anguish, I feel a terrible sadness at being in a broken system that you can’t control, but I don’t feel sin.”
But I wrote the order. I had sworn an oath to do no harm, but in Madison’s final hours, I gave her a medicine that I knew would put her in agony. If it was a sin, that meant I could be absolved. I longed for salvation, for some otherworldly power that could see all this pain, all this death, and somehow make it okay.
Salvation. The word comes from the Latin salvare, “to save,” and ultimately derives from the proto-Indo-European root solh, which simply means, “whole.” That wholeness is my hope. I wanted, I still want, to face death squarely, to take stock of each of its myriad horrors—the disintegration of the body, the destruction of consciousness, the total obliteration of every sacred little daily intimacy—and somehow, still make it all whole. To find a better way to care for the living, and the dying.
That Sunday was the Easter Vigil and I went to the cathedral again. In the darkness, hot candle wax dripped onto my hands as someone read the story of the covenant. Then Easter was proclaimed with trumpets and the organ and the whole cathedral was lit up as the congregation shouted, “The Lord is risen indeed!” Newly baptized children circled the congregation shouting, “Remember your baptism!” and flinging holy water off branches of evergreen.
For me there was no sudden conversion, no tidy answer to the terrible problems of suffering and death. I still had my doubts about the resurrection. Still, I kept returning to the cathedral.
Mother Nancy’s own son, I learned, had died in a hospital much like the one I had worked in with Madison all those years ago. She spoke about his death in a sermon she gave about prayer. “He died,” she said, “and really, so did I, as you’d imagine.” When it happened, she was just starting seminary. Breath of heaven, hold me together, was all she could pray.
The ancient liturgy offers a place, like the old hospitals, where terrible sorrow can stand side by side with transcendence. These days I drink the wine most Sundays, but there is still a big part of me that—like Eusebius’s pagans who shunned fellowship with death—doesn’t want any part of that particular communion.
Eventually my own daughter was baptized in the cathedral. As much as I aspired to make peace with mortality, I wished her baptism could keep her safe, protect her forever from sickness and death. Even as my little girl emerged soaking wet, toddling and giggling, from the font of holy water, I was afraid. But as I stood by the baptismal font, looking out at the whole cathedral decked in red for Pentecost, my daughter in my arms, I felt the sickness in my chest slowly being replaced by a levity that could not be entirely explained by the incense rising in the air.
Names and identifying details have been omitted or changed to protect the confidentiality of patients and their families.
