“She stable?”
“For now. Vented, obtunded, holding her pressures.”
“Family?”
“Family’s all here, I’ve talked to them, they seem reasonable, but I left the dirty work for you. You do it so well.”
I ignored him, grunting one more time as I finally wedged my car into a space vacated by a departing night nurse. “Don’t let the family get away.”
“Don’t worry. From the look of things, they’re here for the duration.”
IT WAS ALMOST TEN before I made my way toward the ER. In the meantime, in a none-too-surprising violation of custom, the ER had decided to send her up to the ICU before I’d had a chance to see her, so as the elevator opened I found myself facing a gurney bearing a large, unconscious form, a ventilator, a nurse, and a respiratory therapist. My doorway survey told me this patient wasn’t going to be on my service very long. I heard the echo of the MAO’s breezy chuckle and suppressed a grimace.
“This the lady with the head bleed?”
“You got it,” the nurse said, leaning hard to get the gurney into motion. It lurched out of the elevator, dragging the vent and IV pole behind it. I lent a hand, swiveling the assemblage out into the corridor.
“The family coming up?”
“They’re probably in your waiting room already.”
We got the patient into a room, settled a few questions about the vent, and I spent a minute rummaging through her chart, jotting down a name, age, and record number. There was a brown jacket with a CT from an outside hospital. I held it up to the fluorescents overhead. You didn’t need to be a neuroradiologist to call this one: there was an inky cloud larger than a golf ball low down on the right side of her brain. It was blood. It also marked a region of dead and dying brain cells, killed by pressure from the expanding mass. With a bleed like this, there’s essentially nothing to be done. There’s no avenue of approach for the surgeons that won’t destroy more than they could save. If the bleeding doesn’t stop, eventually the rising pressure in the skull will extrude the brain through a narrow opening in the membrane that supports the cerebrum within the skull. This process is called herniating: it’s inexorably fatal, but not all that common. From the looks of this one, she didn’t seem about to herniate. But it didn’t look like she was going to survive, either: the hole in her brain was big, and it was low, down where the essential circuitry of life is wired.
I WAS MARSHALING ALL of this largely automatically, as I moved from the smoky shadows of the CT to the patient herself, flashing light in her eyes, tapping on her joints, trying to elicit signs of withdrawal from pain. I wiggled the ventilator tube and she grimaced, slightly: the right side of her mouth curled back in a vague snarl. But the left side was motionless, slack, a slice of eye visible below the lid. With a last glance at the monitor, where a green light kept tracing a steady heartbeat, I made my way out to the waiting room.
AT THAT HOUR OF the day, the waiting room is usually empty, the TV set muttering to itself in a waste of polished blond wood and dusty fabric plants. This morning almost every chair was full. There were children sitting listlessly on the floor. Teenagers slumped in uncomfortable postures, small knots of couples and siblings and cousins and aunts and neighbors and friends and one frail-looking old man wearing a baseball cap with the name of a feed supplier on its stained green front.
“Are you the Wallace family?” I knew the answer, of course, but the sheer size of the crowd had me taken aback. I had a sense of things possibly escaping my control.
From the assembled multitude there came a rumble of assent.
I moved into the room, not sure where to position myself. “I’m one of the doctors taking care of Mrs. Wallace now,” I began. I looked at the frail old man. “Are you Mr. . . . ?”
He looked at me with an expression of absolute incomprehension, his head wavering on his skinny neck. “That’s him,” somebody said. “That’s her husband.”
I moved closer to him, propping myself on the edge of an end table. “Mr. Wallace?”
He nodded.
I identified myself again, and then paused. I did that partly to give myself a moment to think, partly to let them know that something bad was coming.
“I’m terribly sorry to have to tell you this,” I began. A low murmur ran around the room. “I’ve just come from the intensive care unit, and though I’m just beginning my assessment, I’m afraid that I have to agree with the specialists who saw her in the emergency room.”
At some point in my training, I was told that it was useful in situations such as this to say “specialists.” It lends authority. It helps people take in the facts they don’t want to know.
“From the tests they’ve done, and my own exam, I’m afraid her outlook at this point is very bad.”
I stopped again to let it sink in.
“I can’t say at this point if she’s going to live.”
Another murmur. “That’s in God’s hands,” a voice said, followed by, “That’s right. That’s right,” from all around the room.
“That’s right,” I agreed. I have little knowledge of God, but in situations like this I’ve found it’s useful to agree. “Her fate is out of our hands.”
Another long silence.
“Or I wish it was, anyway.” This elicited another murmur, audibly puzzled. The old man was looking at me as though I were a hallucination.
I sighed, a completely unscripted sigh.
“The problem is,” I went on, “we’re keeping her alive. We have a machine breathing for her.” I looked around the room. There must have been at least thirty of them, all looking at me. “And tubes running in and out of her. She’s on life support. She can’t speak for herself now. She needs you to speak for her.” Another murmur of assent. “And the question she’s going to need you to start thinking about—and may need you to answer very soon—is this: Do you think she would have wanted all this?”
A prolonged rumble. The old man in front of me gave no sign he’d heard a word. His eyes—a startling, cloudy blue—weren’t tracking on anything. The tremor of his head went on as though hidden devices were gently stirring him. The rumble rose around us to a scattering of broken words, until finally, from close at hand, a stout woman in her forties said, “What’d happen if you turn off the machine?”
“Then it would truly be in God’s hands.” As soon as the words were out of my mouth, I wanted to call them back. I have no business invoking God.
But my words called forth another murmur of assent. “Turn it off,” a voice in the back of the room said. There was another rumble. “She didn’t want all this.”
This was, of course, what any resident in the ICU would want to hear, and I was relieved to hear it, if a little surprised to hear it so soon. To some extent, this relief is only a humane response to an inhuman situation. In too many cases we keep bodies alive in a way that is only cruel, cruel in direct proportion not only to its futility, but also to the manifold distresses, large and small, physical and spiritual, inflicted by technologies that only put off the inevitable end. To another extent, always there, undeniable but uncomfortable all the same, this relief is a response to the inhuman load of work and worry that comes with the ICU, caring for too many patients and making too many decisions, and too often failing in our task.
But this was too fast. The atmosphere in the room was a little too much like a revival meeting. The enthusiasm was making me nervous. I stood, and started to back toward the door. “You all need time to discuss this. I’ll be here if you have questions. I just want you to remember that the decision has to be yours. We can’t decide, and she can’t tell us. So you have to speak for her.”
I scuttled out of the room as fast as I could.
I DON’T KNOW HOW many times I’ve given that speech, or some version of it, in one small room or another, in one hospital or another. It’s a speech that needs speaking, God knows. No one gets up in the morning expecting to end the day in the ICU, but every day those beds get fil
led. And very few of the people in them can tell me how they feel about what we’re doing to them.
I know how I feel about it. During morning rounds one day late in my intern year, after a night in which all fourteen patients under my care had seemed to be doing their level best to die, I came out of the haze to hear another exhausted intern make a suggestion regarding a patient whose acute pancreatitis had caused her lungs to fill with fluid. The doctor in charge, to whom the suggestion was addressed, had thought for a moment, then replied judiciously, “We could do that. It might kill her.” In my delicate state of mind, I missed the irony of that remark. What my overwrought imagination heard instead was a conversation coming from an ICU in some horrible parallel universe, where the goal was not to save the patient, but to kill her, as slowly as possible. Looking around the unit, at the glassed cubicles where bodies hung from a network of tubing and wires strung over the abyss, it occurred to me that, if such had been our aim, the place would not look all that different. It would not look different at all.
But after rotating through the unit several times, I came to understand what my peers were saying when they said they enjoy the ICU, even though I knew I would never share the feeling. There is a simplicity about unit work, a freedom from the messy problems of discharge and placement, even from many of the refinements of therapy. The things we do to people there are for the most part brutal, simple, and effective. We sustain breath with an adjustable air pump. We support blood pressure with any combination of four different drugs. We fight off infection by the simple means of hosing down the patient with the three or four antibiotics necessary to cover the entire spectrum of known pathogens. The patient doesn’t talk back. The patient doesn’t move. The nurses are generally brilliant. As medicine, it’s relatively simple. And there is a pure and uncomplicated pleasure in taking a patient who is minutes away from death and dragging him out of darkness into light.
The problem, of course, is that sometimes you fall short of that goal. Too often, we’re able to rescue somebody from death, but can’t quite bring him back to life. People get stuck in that horrible twilight in between. And while they may not be able to tell you, it’s difficult to escape the impression that, even if they could, they wouldn’t want to thank you. This is something that can be difficult for people to understand, especially when the patient is someone who just that morning, or the week before, had been a fully living, fully functional, and deeply loved human being.
We practice a scrupulous ethics in my hospital. Patients decide the limits of their care. If they can’t talk, the family tells us what to do. And no matter what I think of their decision, I am bound to respect their wishes, up to the point where my efforts are clearly futile, and then the question is moot: at that point, usually, the patient speaks in the only way left to him, by dying despite everything I can do. Whenever the decision is taken out of my hands, I feel relieved. Who would want the power to decide?
AROUND THE MIDDLE OF the afternoon, I was down in the ED working up a new admission (eighty-three-years-old, living alone, found unconscious on the floor with a core temperature of 107 degrees, and now barely holding her pressures on ten micrograms of dopamine) when I was paged to the ICU. The Wallace family wanted to speak to me. In the interim, Muriel Wallace’s condition hadn’t changed in any significant way. There was no sign her stroke had progressed. Her blood pressure was stable, her heartbeat solid as a rock; as I prepared to meet the family, this, and the way she was breathing over the vent, made me slightly uneasy—the way one always is in the hospital when things don’t progress according to plan.
“Breathing over the vent,” means the patient is taking breaths without the aid of the ventilator. Ventilator management can be complicated; in patients whose lungs are severely damaged, the subtleties of their settings become a matter of art as much as science. But for most patients, as for Mrs. Wallace, the machine was there simply because she was intubated, and it’s hard to breathe through a narrow tube without mechanical aid. The tube itself was there only because she was unconscious: she was intubated for airway protection, and the vent was on minimal support only, supplying breaths twelve times a minute, and giving a helpful push on any breath the patient started drawing on her own. Even on her own breaths, she was drawing in more than the vent supplied. Odds were good that if I were to extubate her, she would go on breathing.
This made me uneasy, I say, as I found the family and ushered them into the conference room across the hall—dozens of them squeezing in until the room was walled with standing, silent figures. Around the table by some tacit agreement most of the elders had arranged themselves in some order of precedence. Mr. Wallace sat at the far end, wobbling, unseeing, fragile. I didn’t have the time to figure out for myself just where this plot seemed to be headed. With her massive bleed yoked to her unimpaired respiratory drive, Muriel Wallace was entering a gray area.
But I was running on autopilot, feeling pressure to move on to some next step in the process. My pager had buzzed twice while the family was filing in. One of the new admissions was crashing. I had a sense of events piling up just outside the room.
A large, stout woman to Mr. Wallace’s right—unmistakably Muriel’s daughter—spoke.
“We’ve been discussing,” she began. “Like you said.”
I nodded encouragingly. She went on. “We’d like to begin by saying how much we appreciate . . .” She paused here, and the silence filled itself with muttered assents. “Appreciate,” she said again, “all the care you’ve shown our mother.”
“And aunt.”
“And sister.”
“Amen.”
“We truly do,” the woman went on. I could hear a “but” looming, and settled myself, trying to remember that I wasn’t here to argue. I wasn’t pushing an agenda. I was here to help. My pager was going off again.
“But.” And her gaze swept around the room. No one stirred. “We have some questions.”
I murmured some polite invitation.
“What,” the woman began, “are our options here?”
I thought for a minute. “I suppose there are three.” But that wasn’t right. I was skipping something. “But before we discuss them, I thought you’d want to know how she’s doing.”
Yes, they sighed.
“She’s unchanged.”
The sigh flowed out of the room.
“She’s not better and she’s not worse.” This seemed to me to sum up the salient features of the case. I plowed on with details.
“She’s still unconscious. I have no idea when or if she’ll wake up.” I paused, letting the room absorb the sound of my voice. “Meanwhile, she’s still on the breathing machine.” I stopped, wondering where to go next. “But she’s not using it.” This elicited some stirring, eyebrows rising, nods exchanging, heads shaking. “She’s breathing in and out without any help from the machine.”
“What does that mean?”
It was messy was what it meant. But I wasn’t sure how to say that. “It means, basically, that her stroke hasn’t gotten any worse. The reflexes in the base of her brain, the parts that control breathing, they haven’t been hit. We could take her off the machine right now and she’d probably do fine.” No, that wasn’t right. “Fine” wasn’t right at all. But the words were out.
“Then let’s do it,” a voice said. The daughter stabbed him with a look, and turned to me.
“Is that one of our options?”
“Yes. It is. But there’s a problem. With what’s happened to her, it’s very likely that she can’t control the muscles in her throat anymore. All the reflexes that we use to keep from choking, to keep things from going down the wrong way—those don’t work anymore. We’ll need to do some more tests, but it’s very likely that if we take the tube out, eventually she’ll choke, inhale something she shouldn’t, and get pneumonia.”
More solemn nods from around the table; glances shifting side to side. I went on. “If that’s the case, then our options would be: to keep her t
he way she is now, to pull the tube out, and”—for a moment I considered referring to God again, but thought better of it—“let nature take its course. Or, if tests show us she needs it, we could have the surgeons put a permanent breathing tube in here.” I gestured to my own throat just above the sternal notch. “It’s called a tracheostomy, and it would allow her to breathe on her own. It would also offer some protection against choking.”
I stopped, not so much letting things sink in as wondering myself where we were going. I was thinking of how long it would take all this to unfold: days and days. And to what end?
“This breathing tube,” the daughter asked, “is that a big operation? Will she stand up to it?”
“She shouldn’t have any trouble.”
Another woman, another daughter from the looks of her, chipped in from down the table. “And can she go home after that?”
That was another question. I paused a minute, this time judging the effect—going for an effect, I realized. What was I trying to do here? “I don’t know,” I said. “There’s no way of knowing for sure. But I doubt it. From what we’ve seen so far, the damage is so severe, it’s unlikely she’ll ever rise from that bed again. Usually, with this kind of injury, you’re looking at a life in a nursing home—”
Mutterings of protest. Under the glare of the daughter, they died away.
“A nursing home would really be the only place that could care for her. Dealing with somebody so severely paralyzed is hard work. There’s constant care involved.”
“We can do that,” somebody said.
Don’t argue, I told myself. “It’s very hard,” was all I said. “But that’s not the issue we need to resolve. Not right now. The question you all need to decide is, would she want that? If all we can buy her is a little time—with frequent infections, bed sores, being unable to do anything for herself—do you think that’s what she would want?”
As I said this, I could feel myself becoming increasingly uncomfortable. Not with the question itself: it’s a common enough question, and one that needs to be asked—sometimes. As I listened to the sound of my voice dying away in the room, even the echoes struck me as wrong. Wrong and wrong and wrong: mistakes seemed to be showering out of me like sparks from a Catherine wheel. Listen to me, I thought: It sounds like I’m pleading with them to let her die. Like I want this woman to die.
Internal Medicine: A Doctor's Stories Page 9