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Standard of Care

A New Mexico ICU Nurse Examines the Patient-Caregiver Experience

July 2, 2013, 12:00 am
James Kelly, a nurse, doesn’t believe in empathy.

If that sounds incompatible with your concept of a nurse, Kelly has an explanation. The inability to truly know what someone else is experiencing is just one theme he tackles in his first book, Where Night Is Day: The World of the ICU.

The ICU, or intensive care unit, is not a place you want to find yourself.

“For a patient to be in the ICU, a system has to fail,” Kelly explains in his first chapter. “The principle of the ICU is actually simple: single-organ-directed interventions to support failing organ systems. A ventilator for the lungs, dialysis for the kidneys, a balloon pump for the heart. Death is indexed to organ failure. For every organ that fails, your chance of dying increases 20 percent.”
But Kelly—who has worked in an ICU for 12 years—predicts that through the course of life, you’ll likely end up there.

“You may never get to Big Sur or drive the Going-to-the-Sun Road in Glacier National Park or see where Hemingway lived in Key West,” he writes, “but the odds are that, one day, you will lie in a bed in an ICU.”
Mandi Kane, a spokeswoman for Christus St. Vincent Regional Medical Center, writes in an email that, in an average year, the hospital treats about “13 patients in the ICU each day.” That adds up to 4,745 patients a year—roughly 7 percent of Santa Fe’s population.

Kelly’s book couldn’t have been published at a more apt time. Many states are grappling with how to implement the national healthcare overhaul. And any New Mexican reading about how the state is tackling that challenge no doubt has also read the grim healthcare statistics: According to a 2013 New Mexico Department of Health survey, the state consistently ranks among the worst in the nation for drug- and alcohol-related deaths. As one of the poorest states in the nation, New Mexico also has the second-highest percentage of uninsured people—many of whom live in poor, rural areas, far away from an ICU.

And then there are challenges within the ICU itself. Recently, nurses at Christus St. Vincent filed a complaint alleging serious understaffing; hospital officials have said that Christus remains committed to patient care. Kelly’s journey through an Albuquerque ICU brings readers to the front lines of modern healthcare.  

Kelly, in his book, calls the ICU “the silent world of suffering.” He was thrown into that world when he was 50. Having graduated nursing school in Vermont in 1998, he and his wife—also a nurse and character in the book—moved to New Mexico and worked in the same teaching hospital. Nursing “was an afterthought,” says the English major and student of theology. Kelly’s original plan was to use his nursing income to support his goal of writing a book, and initially, he didn’t want to write about medicine. But when he began working as an ICU nurse, he writes, “What had these people done in life that they should be made to suffer this way?”

That first question led to Kelly’s chronicling of a 13-week period in the ICU; the history of medicine; the hierarchy of hospitals; and the relationships between doctors, nurses and patients. The book itself offers a critical examination of how the practice of medicine has diverged from the experience of the patient.

Here, SFR talks with Kelly about the impetus behind the book.

When James Kelly graduated from nursing school, he was 50 years old, but says he “wasn’t prepared for it at all.”
Justin Horwath
The following interview has been edited for space and clarity.

SFR: I’m wondering about why you wrote this book. You write in the introduction about giving a voice to the “silent world of suffering.”
James Kelly: When I began writing—years ago, when I first began nursing—I didn’t really think about writing about nursing. I wanted to be a writer. But I think that, being in the ICU, [I] was struck by that world; it was so dramatic to me—the degree of suffering that people experience in critical care. And over time, I started writing about that. But when I started to read about illness—theories about medicine, nursing, theory of illness—I felt [that what] I was seeing and experiencing on my own, as a working nurse, was quite different than I thought that critical theory had it…It was an untold world—undiscovered. And I think my perspective, nursing, is very special, very privileged. Because you’re working 12 hours a day in the ICU, three days a week, and you’re there with some of the family all the time. And you get to hear things, see things, that are very intimate and very personal.

But it seems like the ICU is a very known world to a lot of people, in that they’ve had grandmas or aunts or whomever they’ve visited in the hospital. In what sense do you think it’s not relatable?
Medicine turned away from the patient, historically. And now you find a big trend in medicine to sort of return to the patient experience. What I think I found, and what I was trying to explore, [was] that healthcare providers view illness as being like disease, as being broken—that patients don’t know what’s wrong with them, as if they need help in understanding what’s wrong with them, understanding the meaning of illness. And I didn’t feel that way at all. I thought that people who were really ill showed a great deal of competency, resourcefulness, courage. I was struck early on, as a nurse, by the courage of ordinary people who come in the hospital. I mean they’re working at the Albertsons, they’re working at the library, working at a bank, and the next hour or so later they’re in the ICU—this extraordinarily complex world that’s very alien and very intimidating. And somehow they find their way through. [In medicine,] we think [patients] don’t understand—they don’t understand death, they don’t understand the disease process…It’s very, very patronizing.

Is esoteric the right word?
Oh, sure. Totally. We talk to patients, but not medically. Even doctors don’t talk medically. So it’s sort of condescending, in a way—the idea that they need help navigating their way through the hospital, through disease. You know what I mean?

Almost like a car mechanic telling you about your engine?
Yeah, right: ‘You’ve got this thing wrong with you.’ Sort of like technical terms. Yeah.

So you’re saying nurses have a certain view of patients. Do patients have a certain view of nurses?
There’s always a poll, every year, that says that people trust nurses more than any other profession. I think in the hospital, maybe even in healthcare, there’s a gap between people who are sick and healthcare professionals. It’s kind of a caste, or there’s a lack of trust, a lot of silence between them. I don’t think nurses are that different than medicine. I think what’s unique is their proximity to patients. I think the public has kind of a distrust in healthcare.

In healthcare in general?
Oh yeah, in general. In the hospital, in general. I think patients kind of gather within themselves sometimes. So there’s kind of a lack of trust.

Why do you think that is?
A guy named Charles Rosenberg once said that when medicine grew, it grew inward. It grew inward to its own needs—inward in terms of the hospital—and away from the experience of illness. And I think, in a way, that medicine abandoned the experience of illness, and now they’re kind of returning to it. So I think it’s a historical trend. I think medicine’s rise to power was sort of based upon a kind of consolidation of authority. One way of maintaining power and authority is being esoteric, being aloof and above it.

There are a couple of scenes where you describe a patient having a really rare disease, and all these doctors come in and look at it like it’s one of the seven wonders of the world.
Here’s the moral paradox of the teaching hospital: How is it that somebody who comes into the hospital out of their own needs, their own disease, become[s] an object of somebody else’s experience? A patient comes in there, and they become an object of someone else’s education, right? It’s a contract that they didn’t really agree to. They’re there for a doctor to learn about disease. But they’re there to be treated, right? To have the disease be cured. I think they sense that they’re there for other reasons: to be an object of learning.

To me, that’s understandable. There is a public disgust of journalists because we kind of treat people like they’re objects of our stories. On our end, it’s like, ‘The public needs to know about this.’ And maybe it’s similar: doctors have to have that kind of calculation, to study disease, to keep learning about it in order to save people’s lives, to treat people. Do you agree with that?
I think that’s true, yeah. I think they maybe have that approach that’s kind of objective and detached. Being a nurse, you see sort of like a disarray in health care. You see poor outcomes in hospitals. You see a lot of like medical error…human error, medical error, wrong mistake, wrong medication and wrong surgery. I think the problem [stems from] a lack of rapport [and] trust between patients and physicians and nurses in hospitals. It’s a variant of alienation in hospitals, and distrust and all that. If we can see their world differently, it will help us to treat them better—more trust, better outcomes and fewer medical errors.

And where are nurses in that equation?
Patients trust us more. And we spend hours with them, hours talking to them. We let them in: ‘How’s he doing?’ The doctors come and go. I critique medicine, but I also critique nursing, as well. I think nursing is so caught up in this sort of defense—how it’s viewed by medicine, how it defines itself, and trying to find its own place of power and influence.

In the second chapter you write that, historically, hospitals in America were seen as “sinks of human misery.” Is that changing, in your view?
In a way, hospitals really aren’t the ideal place to have medical care. I mean, I know in France in the 19th century there was a call [to] ‘abolish the hospitals.’ That was not seen as being the place you wanted to have medical care. So historically, hospitals [are] very ambiguous organizations.

How has your perception of illness changed since you started as an ICU nurse?
Profoundly. I think we tend to view patients as being like people who are not intelligent, they’re not confident, they don’t know what’s going on—that they lack knowledge. But I found them quite the contrary—extremely dignified, very courageous, very resourceful. They come there and they’re told unimaginable things—too sick to recover, can’t operate because they might die—but they don’t flinch. They show incredible courage, but I think we don’t recognize that. That might sound kind of obvious, but it’s not obvious at all; it’s not widely recognized in healthcare or in nursing. And I was really struck by that. That’s why I called the book a love song to people. It’s a sort of homage to everyday life. And I think there’s a moral and ethical message in that, in that recognition.

Once you started nursing, you went right into the ICU, which is pretty rare. Was that a shock?
Yeah. When I graduated, I was 50 years old, but I wasn’t prepared for it at all. I walked in I saw all these rooms—people ventilated, intubated, machines all around them, a line there, paralyzed. It was such a shocking role. I thought it was a world of suffering as opposed to healing; it was a very extraordinary sight to me.

Is it difficult to work a 12-hour shift and then go home and, you know, eat dinner? Does that weigh on you emotionally?
Not at all. Some people say, ‘I couldn’t be a nurse. I don’t think I could handle all the sorrow.’ But actually, when you’re professionalized in nursing, and you deal with it day in and day out, you become not immune to it—not insensitive to it, but it’s really your job. And you’re not untouched by it. I had a patient last week—a man whose wife we withdrew on. He shook my hand, thanked me. And I thanked him, and I cried with him. But it doesn’t affect me when I leave the hospital.

Why do you think that is?
You’re clearly touched by it. But this plays on one of the book’s themes: I don’t believe in empathy. I don’t believe in it at all. One of the theories of medicine and nursing is the idea that we can experience a patient’s experience. And by sharing their experiences, we can help them understand what’s going on with them, what’s wrong with them—help them find meaning. That’s sort of a trend now in the philosophy of medicine. I don’t think empathy is a bridge you can cross into somebody’s life; it’s so much their life, their experience, that we can’t share that. There’s a book by David Morris [in which] he talks about the country of the ill. I say illness is more like an island than a country. You can go on; you can come back. You can visit the island, but you can’t live on the island. Someone who’s having the experience of a husband dying, a child dying, someone—a lover—dying, a mother who will never wake up again: You can never know what that’s like. You can witness it; you can help them; you can be there—but you can’t experience. And I think that’s a big part of why that doesn’t affect you as a nurse. Does that make sense? I don’t know. I say it out loud and it’s funny.

Yeah—you don’t believe in empathy in its purest sense, like ‘I can truly know what you’re experiencing’?
You can’t know what I’m experiencing. Being a nurse, you understand those feelings—like sympathy and empathy and all that. That’s why I critique them in the book. I examine them critically. Like, is there meaning in illness? Is suffering silent? Is there such thing as empathy? I really think there’s not, and that sounds kind of against the grain. But I think that’s why we [as nurses] are not so overwhelmed by things sometimes: You don’t have to enter into their lives.

Below is an excerpt from Chapter 6 of Kelly’s book. Like most chapters, Kelly begins by offering some historical context—italicized—and then throws readers into the ICU.

Nursing: What It Is and What It Is Not

Florence Nightingale wrote Notes on Nursing in 1859, fourteen years after she began taking care of the sick. It is subtitled What It Is and What It Is Not. It was written for women who had personal charge of the health of others, which would be “almost every woman in England.” The book was not a manual to teach someone how to nurse or to teach nurses to nurse; it was a book of hints. Nightingale believed that “the very elements of nursing are all but unknown.”

What nursing was not, however, was certain: it was not medicine:

“Nursing is recognized as the knowledge which everyone ought to have—distinct from medical knowledge, which only a profession can have.” That knowledge, the very fi rst canon of nursing, the first and last thing, without which all the rest you can do for a patient is as nothing, is “To keep the air he breathes as pure as the external air, without chilling him.”

One hundred and forty-eight years later, in Our Present Complaint, Charles Rosenberg, the historian of science and medicine, writes that, in its commitment to the person as a whole and not to a disease or organ, to care not cure, nursing has a structural—linked but subordinate—relationship to medicine. But, he writes, “nursing is by definition not medicine.”

Thirty years ago, nurses didn’t carry stethoscopes, didn’t listen to the heart, the lungs, the stomach. Physicians started IVs. Nurses didn’t draw blood. Doctors pushed chemo. There was no defibrillation, no advanced cardiac life support with all the algorithms for V-tach, V-fib, asystole.

Since then, a lot of what was medicine has drifted into nursing. Now nurses titrate drugs such as Levophed and dopamine that are like rocket boosters in the body, interpret arterial blood gases, decide what’s artifact or arrhythmia, call the code, call the doctor, make decisions all day long.

Suzanne Gordon writes about how increased patient acuity, sophisticated treatment regimens with narrow margins of therapeutic safety, potent drugs, and complex intricate interventions have created a skilled, and largely unacknowledged, area, outside the traditional boundaries of nursing practice.


***

Bed Ten just died. She came over the U.S. border a month ago from Mexico, gave birth last week, and arrived last night in cardiac arrest.

They coded her for almost two hours. They shocked her ten times.

They’re trying to convince the family to autopsy. The room is dark.

When there’s a dead person in a room, the room looks different, feels different, as though something has gone out, letters missing in a neon sign.

There are three residents outside the room standing shoulder to shoulder, so close the sleeves of their white coats touch. Jacobs I know, two others I don’t. Their faces are shiny; light gleams off their glasses.

Everything about them is trim; they’re like a new ship with white sails: hair moussed, dark dress slacks, white coats. Their backs are to the door leaving the unit. Facing them are several men and women. The women are weeping softly into their hands. The men wear large black felt cowboy hats with brims that rise up like waves and curl back into the high furrowed crowns. They are wearing long-sleeved western plaid shirts with silver snaps and front pockets with flaps that are buttoned.

Their jeans are clean and still blue with a pressed fold that runs down the length to boots that come to points as sharp as a woman’s high heels.

They wear black leather belts with silver buckles as big as doorknobs, polished to a shine. They are stocky men who stand straight, with big chests and thick thighs and their clothes fit them like skin without an inch wasted. They stand stone still, and the grieving women flow around them like fish.

***

Betty Robinson got a crush injury when a friend rolled a wheelchair over her toes. She waited three days to come to the ER, and when she came they were gangrenous. She’s diabetic. Neuropathy. Diabetics can’t feel things—cuts, chest pain, have heart attacks and don’t know it. Maple trees in Vermont die from the top down; diabetics die from the toes up.

The dates on the progress notes are like cairns that tell you where the trail came from and where it’s going:

10/16: Pt. had vascular procedure and debridement and subsequently became incoherent, then unresponsive; hypotensive; bradycardic; transferred to the ICU and intubated for respiratory failure;

10/17: Transvenous pacemaker placed for symptomatic bradycardia; too unstable for cardiac cath; respiratory failure possibly secondary to MI vs pulmonary embolism vs flash pulmonary edema.

10/19: Now diagnosed with acute MI, troponin peaked at 48; worsening gangrene, cardiogenic shock; needs temporary pacemaker; acute renal failure; EEG shows global slowing, anoxic injury.

Sometimes you can’t tell whether they’re falling slowly to the bottom or rising to the surface. She’s a huge woman, African American. She opens her eyes when I ask her to, squeezes my fi ngers, lets go. Long strands of black and gray hair on her chin like a daddy longlegs, little black moles on her face like those sprinkles on doughnuts called jimmies. She raises an arm slowly. Her gown lifts up. Between her legs, down the inside of her thighs are large open wounds. They have wavy pink borders like coral surrounding an island of eschar and look the way islands look from the sky. Her toes are like hot dogs that fell into a campfire. She has a gastric tube through her right nostril. It’s to suction, to a little plastic container on the wall that has about two inches of dark brown liquid that looks fecal.

***

Outside Bed Ten, the residents and the family of the dead woman haven’t moved.

Delma, one of the housekeepers, is here to translate. Jacobs says to her, “Tell them we’d like to examine her heart. It would be for research.”

“Los médicos quieren examinar su corazón. Sería para la investigación.”

One of the Mexican men says softly, “Cuánto se tarda? Queremos llevar su cuerpo de regreso a México.”

“How long will it take? They want to get the body back to Mexico.”

The other men are quiet but their eyes alive.

“We can call the pathologist right now. He could be here in ten minutes. No more than three hours. Tell them we can find out why she died.”

“Tres horas. Podemos descubrir por qué murió.”

“Tell them we can do it right now. Tell them we have to do it right away.”

“Tenemos que hacerlo en seguida.”

Silence.

“It will help someone in the future.” Impatient because time is of the essence. Death is the teacher and the enemy. Death the wind erasing footprints of the disease.

The nurse is Lynette. She’s trim, a biker. She’s been listening to it all.

The men don’t say anything. It’s like the O.K. Corral before the first shot was fired.

“Tell them they can just say no,” Lynette says.

The doctors all turn to her the way in sci-fi movies those dishes listening for sounds from space all turn at the same time.

“Se puede decir que no,” the housekeeper says.

“Qué va a pasar?” It is always only the one man who speaks. They look like vaqueros.

“They want to know what will it mean,” Lynette says.

“We’ll take her to a different part of the hospital, and the pathologist will make a small incision to examine her organs. We’ll bring her back in plenty of time.”

Silence. There’s English, then Spanish, then long silences. No one moves.

“It won’t help his daughter, but it might help someone else someday.”

His daughter. One of the men is the father.

The father speaks, “Este médico puede venir inmediatamente?”

Jacobs can tell by his tone. “Sí, pronto. Call Brennan,” he says to one of the residents.

Excerpt from Where Night is Day by James Kelly, published by Cornell University Press.
© 2013. All rights reserved.

 

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