what we learn from the dying
This is by far the best article I have ever read on the internet. And, believe me, I've read a lot. This one is kind of long, but I promise it's worth it.
What We Learn from the Dying
by T.E. Holt, M.D.
My first day of medical school was a series of inspirational talks. The tone, set by the anesthesiologist who led off, was lighthearted. His subject was "Everything you will ever need to know about medicine." This turned out to be just three things, which he had us all recite: Air goes in and out. Blood goes round and round. Oxygen is good. Just keep these in mind, he said, and you'll be okay.
By the end of the day, we were as blank as the huge whiteboards at the front of the room. Within the next 24 hours, these would start filling up with diagrams of cell-transport mechanisms, cartoons of developing embryos, maps of the brachial plexus. But on that first day, the lectures were so inconsequential that only one speaker bothered to write anything down. This was a pathologist who also wanted to reduce medicine to its essentials. He scrawled a single word on the board: DEATH.
Just avoid this one thing, he said, and we'd be okay.
The word stayed up there on the whiteboard the rest of the day. I waited for someone to notice and wipe it away, but no one did. It was gone the next morning, replaced by the Krebs cycle, that happy intracellular Rube Goldberg mechanism that keeps us all alive, whether you can diagram it from memory or not, thank God.
Whoever scribbled the Krebs cycle in place of that single stark word gave us our real orientation to medicine. Despite death's modest appearance that first day, what we were really learning wasn't "Don't Fear the Reaper" so much as "Don't See the Reaper."
We don't like to find that word staring down at us from the wall. If we do, we'll hang it on somebody else, shrouding it behind a screen of medical abbreviations, and then we'll be gone. The word's still there — it follows us, of course, as the moon follows a moving car — but as long as we don't have to keep looking at it, we're okay.
The problem is, death keeps looking at us. When I'm forced to think about this, what I see most clearly are the faces of patients at the moment they recognized the incredible fact that they were going to die soon. This is what I can't forget: the look they had as they read the writing on the wall like Belshazzar did at his feast in the Bible story, faced at the height of his power with the message that he was about to die. Just what people see as they read that message is, I suspect, the most important fact about death. I know that fact escapes my grasp, but I keep reaching for it, all the same.
He was 18 years old with cystic fibrosis. By unspoken agreement, we had left him until last on morning rounds, because overnight the lab had analyzed his blood and cultured Burkholderia cepacia — an organism that flourishes in the pus that overwhelms the lungs in end-stage cystic fibrosis. It's notoriously resistant to antibiotics. (It's been found growing on penicillin.) Once B. cepacia escapes the lungs and enters the bloodstream, death is inevitable: sepsis, circulatory collapse, multiorgan system failure, the end.
After a muttered conversation in the hallway, we edged into the room. I was nervous: I was going to have to tell this kid he was dying. He was awake, sitting up in bed. The room was dark. It had that lived-in look CFers cultivate — posters, clothes strewn everywhere, a game console flickering on idle. A wasted-looking father slumped in the corner chair. The patient watched us file in. When I saw the expression on his face, my anxiety about what I was going to say seemed suddenly unimportant.
He knew. He already knew. He barely listened as I reported what we had learned from the lab. Then there was silence. He looked back at me as if I weren't there and said, "I'm going to die, aren't I?"
It wasn't really a question, the way he said it. My answer was as irrelevant as everything else that we had left to offer him. The attending stepped in and started talking, but I could tell the patient wasn't listening.
A year or so later, I was the resident on the oncology service, responsible for two dozen or more patients, all of whom were doing badly. Doing badly with cancer means terrible things: organs malfunctioning as tumors squeeze them off, pain that soaks up morphine like water, treatments with a list of possible side effects that includes death.
Into this substation of hell one day walked a strong man in his early 40s, looking about as healthy as a man can look, though perhaps a little pale. Earlier that day, a blood test had revealed a swarm of misshapen, blue-stained cells that should have been functioning parts of his immune system but instead were leukemia. He was in what they call "blast crisis"; our job was to help him survive the night so he could start chemotherapy in the morning.
Over the course of that night, his blood levels of oxygen started to drop, his left eyelid developed a droop, and I had to explain to him that if I didn't insert this honking big catheter into his femoral vein, he wasn't going to live to see the morning.
I could see him change. He had walked in as a functioning adult. He had asked intelligent questions before signing the consent form. He had been calm, helpful, determined. He had a pleasant smile. That was until about 4 p.m. As things started to unravel, he became at first bewildered, then querulous, and then, as the leukocytes started clogging the capillaries of his brain, confused. He tried not to groan as I probed for that vein in his groin, but despite the lidocaine, when I sliced into his skin to widen the opening for the catheter, he screamed. After that he settled into a silence that deepened throughout the night.
He lived to see morning, and beyond, but over the next 3 weeks, he never smiled again in my presence. The misery that had settled around him deepened as his blood counts dropped, and even the most trivial infections swept over him like brush fires. By the end of his third week, he was unrecognizable: gaunt, with crusted lips and a look in his eyes. Hollow, haunted, certainly, but also sullen, as if he resented us and everything we'd done in the name of curing his disease. We should have warned him, I thought his eyes might say. We should have told him just how bad it would be. But by that time he had stopped speaking to anybody.
He wasn't that sick, understand, not until the very end. What stopped him from speaking wasn't anything physical. I think it was the knowledge that had started growing in him that first night, that all of this could unravel. That everything he had taken for granted — his health, his body, his life — could all turn out to be so fragile that a wayward sneeze could blow it away. In the face of that knowledge, what is there to say?
'Let him go'
Another case: A nice enough guy in his mid 40s came to the E.R. complaining of chest pain. Changes in his EKG and the results of blood work showed that his heart had been damaged. I managed to meet the patient for about 5 minutes before they wheeled him off to the cath lab. A nice enough guy, a little giddy from the morphine, not really able to take any of it in.
He came out to the CCU a few hours later, still groggy, surrounded by a forest of IV poles running all of the latest anticoagulants. A few hours after that, a nurse paged me to say she couldn't wake him up. He was answering questions in a sleepy, fretful voice. His answers just weren't making sense. When I arrived at his room, I pulled up his eyelids: His pupils were tiny black dots, and they were pointing in different directions. We had him in the scanner 12 minutes later.
I put the CT frames up on the view box and they showed a big white blot in the middle of the patient's brain. The blot was blood: an artery had ruptured. The neurosurgery resident on call was looking over my shoulder.
"We can't touch it," he said.
And that was it. Over the next several hours I was going to watch this patient die. In fact, he was already dead. The process is well described in the literature, inexorable and orderly in its progression. A classic. I'd seen it a dozen times in textbooks, but I'd never watched it happen in real life.
The blood collecting in his skull was starting to build up, pressing on his brain. Soon his brain would have only one place to go: down a very tight opening in the membrane that supports the brain within the skull. There it would squeeze off its own blood supply and die. And a little while later, it would bear down on the brain stem and squeeze off the nerve centers that kept him breathing.
I called my attending and gave him the story. When I was done, he said, "Just keep him comfortable. And let him go." And then the attending said, "Have you seen this before?"
I told him I hadn't.
"Go examine him periodically. Check his retinas. Watch the posture change. Everyone should see this once."
Every half hour or so, in between trying to keep others alive in the ICU that night, I went into the room and peeled back the man's eyelids. I don't remember, really, what I felt as I watched the retinas bulge out as the pressure in his skull increased. I memorized the way it looked, because sometimes you will see this in, say, a case of meningitis, and it's important not to miss it.
The last time I came into the room, the man's eyes were open. They were blank as a pair of billiard balls. He was panting, his pulse was 42, and his pressure was dropping. The end was near. I thought to look one more time at his retinas. But as I leaned over him, in both of his open eyes I saw my own reflection hovering, a figure robed in white, immense, hazy, and distorted.
In my fourth year of medical school, I spent a month in the neurology consult service. Many of the cases we were consulted on were sad: a teenager in the eighth day of an epileptic seizure; a man who had come in because of a twitching thumb — and left with a diagnosis of Lou Gehrig's disease; a 52-year-old who couldn't remember anything since a car accident on Christmas Eve in 1964 and kept asking where his parents were. But the worst times were when the admitting team wanted us to decide if its patient was brain dead. This is a dismal question, and the request is usually prompted by a family struggling to accept what has happened. We averaged one of these each week. The first that month was a 22-year-old housepainter who had set an aluminum ladder against a high-voltage power line. He lay in a bed in the burn unit, surrounded by a dozen relatives who followed our every move.
The brain-death determination involves some startlingly crude maneuvers, one of which is a test for "withdrawal from noxious stimuli." This means hurting someone to elicit a reaction. I stood and watched as the attending demonstrated this. As he worked, a murmur arose from the relatives lining the wall. When the attending rolled the patient's head from side to side, yanked on the endotracheal tube, and poured ice water in both ears, the murmuring grew louder. When we left the room, I was sure the expressions that followed us were reproachful.
My last brain-death evaluation that month involved a 32-year-old man who had been found unconscious on a stifling hot July day. When brought to the E.R., his core temperature had registered 107.8°F. The man had shown no sign of mental activity in 4 days, and the ICU team was starting to worry.
The room was almost empty when I found him: no relatives, just me and the form in the bed and the ventilator at its side, hissing and chuffing in its stately rhythm. The man's pupils were fixed and midline. Ice water in the ears produced no movements of the eyes. There was no withdrawal from noxious stimuli. I recorded all of this and took the story to the attending.
"Let's go see," he said.
When we got back to the room, his family members had arrived. They stared at us solemnly as the attending began the exam all over again. There was no murmuring this time. Even at the application of noxious stimuli, the entire group — parents, siblings, spouse, children — simply watched us.
When the patient's eyes flew open, I may have gasped. Certainly the family did. The attending let out a satisfied crow: "Did you see that?" The man on the bed was staring, eyes wide. Behind me, voices were rising, uncertainly at first, then breaking into cries of jubilation. I think the attending actually took a little skip in the air before he turned to the bed again. He was busy for 1 or 2 minutes, his hands waving this way and that before the patient's gaze. Ecstatic sounds filled the room.
In their joy, the family didn't hear, as I did, the attending quietly say something that sounded like "Uh-oh." With a guilty sideways glance at them, he turned to me and beckoned. I leaned over. "Look at this." He waved a penlight up and down before the patient. The eyes followed it exactly.
"Do you notice anything?"
Locked in
The eyes had moved. They were clearly tracking. Our patient lived, aware of our presence, probably hearing voices of people he loved crying out in exultation. Yet, despite the precise activity of the eyes, despite all the tumult around us, the patient's face revealed nothing. His limbs were motionless. Not even a finger was twitching.
I looked at the attending. He was staring down at the patient, looking stricken. "My God," he said quietly. "He's locked in."
"Locked-in syndrome" is one of those things you learn about in medical school, not because it's common, but because it's terrible. Every year, when the neurology lecturer introduces it to the second-year class, everyone makes that gasping sound reserved for special cases — the ones we hope we never see ourselves. The man in the bed had suffered a small stroke in the area of his brain stem called the ventral pons. It had cut the connections between his brain and every muscle in his body except the few that make the eyes move up and down. Above the stroke, the mind is awake, aware, as alive as a mind can be. The body below is as inert as death itself. Without the ventilator, he would suffocate in less than a minute. He would never speak, never grimace in pain, never again lift one finger off the bed. Awake, aware, he was buried alive in a body that was already dead.
As I stood at the bedside, looking down on the eyes that occasionally locked with mine, I felt the closest approach to horror I've ever had. It was the absolute absence of expression, I think, coupled with eyes that still somehow signified a living presence, that made this thing so horrible. Compared with people looking death in the face, these living eyes staring back at me were simply intolerable.
As the chorus of voices at our backs faltered, died away, and then, as the attending talked to them, rose up softly in a moan, I had to catch myself to keep from joining in. This was, I told myself, the worst thing that could ever happen to a human being.
Waiting for a miracle
When we returned the next day, the family members were still there, gathered around the bed. We heard them before we reached the doorway. They sent up an excited chatter that rose and fell as if they were spectators at a fireworks display. As we entered, they drew aside. At the bedside a figure in blue scrubs was chanting "there, there, yes, that's it, there." At each of her words, the patient's right hand responded with a wave. And as we reached the bedside the patient's face changed, rearranging itself into an expression I could not at first understand, until I realized the left side was twisting upward into half a grin. The stroke was resolving. We had been completely wrong.
The attending found his voice when we'd left the room.
"You've just seen a miracle," he said. "And now, for the rest of your life, every time you come up against a hopeless case, you're going to remember this guy." He shook his head. "God help you. And God help your patients." I didn't need him to explain. He meant that from then on, I would keep expecting miracles, and they would never come.
He was right, of course. No miracle, nor any medical machinery, is ever going to scrub that word off the wall. But in the years since, I have come to think he also missed the point. It wasn't about miracles at all. It was simply a matter of (as the old vaudevillians used to say)...timing. We hadn't really been wrong. The patient was locked in — as locked in as we all are, in this mortal shell, with only one way out. But the prison door hadn't closed on him quite yet. Knowing as much as we do, spending so much of our time staring at something we don't want to see, under the tension of not death so much as our denial, we had simply assumed the worst.
What I have learned from my patients since that day is that we give death power (as if it needs it) — power not to kill us but to rivet us, to silence us, to drive us from our humanity while we still live. We give death power precisely to the extent that we work to ignore it, to blind ourselves to its closeness, to imagine we have the power to stave it off forever. If we go through life imagining that, then the moment when we are forced to look at death can only rupture everything we know and paralyze us, still alive. That's not a good way to die.
Death may be, as Wallace Stevens has it, the mother of beauty. But it's also a lot like that Krebs cycle: It just keeps happening, whether we pay attention or not. You really can go about your business, as long as you remember that death is taking care of his. Air goes in and out. Blood goes round and round. Oxygen is good. Take care of yourself. And totally Melvin somebody today.
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John