Art has something to do with the achievement of stillness in the midst of chaos. A stillness which characterizes prayer, too, and the eye of the storm . . . an arrest of attention in the midst of distraction.
—Saul Bellow, The Paris Review (1966)
Friday, 5:45 a.m.
I don’t believe in ghosts. But that’s what comes to mind when I see him coming toward me: Is it a ghost? It’s like those hallucinatory movie scenes in spaghetti westerns where at first you’re not sure what you’re seeing as the lone rider emerges slowly out of a shimmering horizon on a high mesa. I can’t see his face from this distance—the hospital corridor, eerily empty and silent now, is the length of a city block—but there’s something about him that makes me stop and watch and wait. If his crumpled white suit and running shoes are any indication, he’s a surgical intern. I don’t know any surgical interns. And yet, there’s something about the way he walks, tired but effortless, an elite athlete heading for the locker room after a long, tough game. I’ve seen this walk before.
I’m on my game this morning, after collapsing into bed early last night and sleeping straight through the night. Before I did, though, I called in to check on Mr. Warner—he looks good, Dan said—and then called out to Shelter Island to check on Mom and Dad. Mom was resting comfortably, Ruth said, but she was exhausted from her hospital stay the night before. Dad was flying. Twenty-four hours ago, when I had been out there myself, he had looked as if he could die at any moment. But last night, he was jabbering away, telling old stories, jiving with Ruth and making her laugh. It’s the morphine, Ruth said, he loves his morphine. This was true, I knew—Ruth put Dad on the phone and, pleasantly delirious, he made me laugh, too. But he also made me wonder: Hospice nurses, who know a lot about such things, say that the dying often revive transiently, just before the end. Like the embers of a banked fire, some of us pop and flame just before we go cold. We spark, laugh, take a curtain call. Briefly, we flare up, ourselves again, for a few hours or days. I wonder if that’s what’s happening now to Dad. Either way, I’m glad he had some fun last night.
As the young intern approaches, he can’t help noticing my interest. He shoots me a benign but wary look. He’s the spitting image of his father. He even moves like him. It’s been decades since I’ve seen Phil, a respected surgeon in Connecticut who was my medical school classmate here forty years ago. The only memory I have of Peter, Phil’s youngest son, is watching a towheaded two-year-old whack golf balls like Tiger Woods in his parents’ backyard. His golf club was taller than he was but no one was surprised by Peter’s precocious skills. His dad had been a great athlete, too. Years later, I heard through the grapevine that Peter had become an All-American golfer at Princeton. I hadn’t known that he’d followed in his dad’s footsteps to become a surgeon as well. He’s got the genes, that’s for sure.
I stop Peter in the corridor, introduce myself. I can see from his reaction that I’m not the first to do this. Peter’s dad was a surgical resident here long ago; clearly, some other old-timers have seen the ghost, too. Peter’s in a hurry now, lots to do, but he’s polite and respectful, glad to remember me to his parents. As we head off, we find ourselves approaching the same private room. We’ve come to see the same patient, Mr. Principo.
I’ve read the ED doc’s overnight admitting note about Mr. Principo and I’ve looked at the X-rays and CT scan of his chest. So I know some important things about him before I meet him. But there are other things I don’t know, things I can know only by doing what I’m about to do now. In the old days, Peter and I might have examined the patient together, the young doctor watching the older one and vice versa, each of us learning from the other. But there’s no time for this now. Peter has two other preoperative patients to see before he makes rounds with his Thoracic Surgery team at 6:30 and I have to meet my own team at 7:00. Peter says he’ll circle back after I’m done. Before he leaves, I tell him what I’m concerned about. Putting a big tube into Mr. Principo’s chest, which Peter’s surgical team has been asked to do, may not be the right way to go. Briefly, I explain why. For an internist, even an experienced one like me, it’s a subtle point, but Peter, less than a year out of med school, is way ahead of me.
Yeah, I saw the pictures, too, Dr. Reilly. Not a problem. In cases like these, we just do VATS. I’ll discuss it with my seniors but it shouldn’t be an issue, assuming the patient consents.
VATS is video-assisted thoracic surgery, a “minimally invasive” surgical technique that allows the surgeon to perform major chest operations through very small incisions between the ribs, using instruments equipped with miniature movie cameras. It’s easier and safer for the patient, especially an elderly one like Mr. Principo, because the surgeon can work inside the chest without cutting it wide open. VATS is fairly new, something I don’t know a lot about. As Peter leaves, I josh him a little, suggest that maybe we should call his dad to come in and help.
Peter chuckles, shakes his head. Yeah, well, in the old days, maybe. But, today, even Dad would admit this one’s out of his league. He doesn’t do this stuff.
I don’t mention that I don’t do it either. Peter is used to doing newfangled things that the old farts like me know little about. In medical centers that do cutting-edge stuff, it’s a given that I and other doctors of my generation are being left behind. Peter’s dad is a general surgeon, trained decades ago to operate on almost anything, the surgical equivalent of an old-fashioned internist like me. (Back then, it was often joked that great general surgeons like Phil are good internists who, unlike internists, also can fix things.) Today, just as I’m being replaced by subspecialists in medicine—cardiologists, oncologists, gastroenterologists—general surgeons like Phil are competing with surgical subspecialists, elite technicians who operate only on the neck or the breast or the colon. I can almost hear the conversations around the holiday dinner table at the McWhorter house, Phil needling Peter about the decline of “real surgeons,” Peter noodging him back about the cool new surgical technique he’s learning every day.
If I were Mr. Principo, based on what I’ve just seen on his CT scan, I’d want the superspecialized technician who does these new VATS procedures every day, not an old-fashioned general surgeon (who doesn’t). But Mr. Principo shouldn’t have to choose between cutting-edge technical skills and old-fashioned clinical expertise. It’s my job to make sure he gets the benefit of both. To do this, though, I have to know more about him than what his CT scan shows.
As I enter his room, his wife is hovering at his bedside. There’s nothing unusual about this except the time of day—it’s very early—and Ms. Principo herself. She looks like someone who used to be in the movies, an actress whose name you can’t quite recall. As it turns out, that’s exactly who she is. Mr. Principo is a retired film director. His wife started out as an actress, then became a successful editor. She’s about my age, at least twenty years younger than her husband but no spring chicken. Still, despite her lack of sleep, makeup, or reason to smile, she’ll turn heads even here in the hospital.
I introduce myself. She seems relieved to see me.
I was beginning to think all of the doctors in this hospital are thirty years old, she says.
Yeah, well, on the night shift, that’s not far off.
Isn’t this still the night shift?
Technically, yes.
So?
At my age, I need a head start to keep up with the young ones.
I know what you mean, doc, her husband says.
I like him right away. He reminds me of my father. Like Dad, he’s tall, his sheeted feet extending to the bottom of the big hospital bed. The same white hair, brainy forehead, strong jaw. And the resemblance is more than physical. As we talk, I get the sense that this is a guy you can trust. It seems silly to describe an eighty-four-year-old man as mature, but that’s the feeling I get: Like Dad, this guy’s an adult. There’s something about him that tells you he’s been around the block—he’s had his fun but taken his hits, too—and he’s learned a few things along the way. In just a few minutes, I can see that he knows what he’s up against. And yet, his equanimity is almost palpable. I’ve marveled at this phenomenon before: There really is something to this “Greatest Generation” stuff. Whatever your battle, you’d want Mr. Principo on your side. Somehow, you can just tell that he’d have your back.
The pain and shortness of breath began about a month ago when he fell out of a tree. At the time, he was pruning branches in his apple orchard in New Jersey. Unfortunately, from the look of him now, I doubt that’s when all this really began. He’s a lean, muscular guy—men half his age would envy his physique—but his cheeks and temples look more hollow than healthy. When he fell out of the tree, they took him to the local hospital, where the doctors told him he had two broken ribs and some bleeding in the space around his left lung. It should get better on its own, they told him, though it would take several weeks. Instead, it got worse, not only the pain and the breathing trouble but also Mr. Principo’s sense that something bad was happening. He returned to his local hospital yesterday; he was told that there was more blood in his left chest than before, not less, and that he should stay in the hospital to have more tests. Instead, he and his wife got into their car, made the four-hour drive to Manhattan, and plunked themselves down in our emergency department together with a couple of hundred other people. His entire left chest is filled with fluid—blood, probably—so you can’t see his left lung at all, not even on the CT scan. Despite this, he can walk and talk and get around all right, so the ED guys admitted him to us after talking to the surgeons. Dan, who saw him during the night, hasn’t typed his own assessment into the computer yet, but I can see that he decided to wait until morning before removing any fluid from Mr. Principo’s chest. Now that I see what I’ve come to see, I’m glad Dan waited.
At first, I don’t find what I’m looking for. I don’t feel any abnormal lymph nodes in his neck or behind his collarbones. His voice isn’t hoarse, though his Adam’s apple deviates to the right, pushed to one side by all the fluid in his left chest. His liver isn’t enlarged or hard and his neurological exam is normal. When I tap on his chest with my fingers—it’s like playing a bongo drum—the percussion note over his air-filled right lung is tympanic, as it should be, but the sound on the left is deadly dull. When I listen with my stethoscope, I’m surprised to hear breath sounds on this dull left side but then, thinking as I listen, I’m pretty sure that the breath sounds I hear on the left are being transmitted from the right. His left lung isn’t breathing at all. If that’s what Dan thought, too—and if that’s the reason he didn’t put a tube in there yet to drain the fluid—then Dan’s even smarter than I thought. Putting a chest tube in there could make Mr. Principo worse, not better.
Still, after finishing my examination, I’m not sure about any of this until I sit him up to help him put his shirt on. I didn’t see his drooping left eyelid while he was lying down. But I see it now.
His wife has been watching me, waiting patiently. Now she begins to ask questions. She has heard that we’ll be putting in the chest tube this morning. When? she asks.
I hold up a finger, ask her to wait one more minute. I look at him again.
His left eyelid droops by only a few millimeters, so subtly that in someone else I would pay no attention. But, in his case, it means everything. I press my thumbs above his eyebrows so he can’t use his forehead muscles to help lift his eyelids. No doubt about it, then, his left eyelid is weak. I also see that his left pupil is slightly smaller than his right. Just a few minutes ago, when I wasn’t specifically looking for this, I missed it completely. And now, when I shine my penlight into his eyes, both pupils constrict normally, just as they did before. But, this time, I keep looking after I pull my penlight away. Only the right pupil relaxes, dilating back to its resting size. The left one doesn’t; it remains constricted, as if my light were still there.
Such a minor thing. It doesn’t bother Mr. Principo a bit. He doesn’t even know it’s there. But, together with his hollow temples and fifteen-pound weight loss, it means that his fluid-filled chest probably has nothing to do with his falling out of an apple tree. To try to confirm this, I feel behind his collarbones again, digging deep, so deep that he grimaces a little. Nothing there. Too bad, in a way. It would have made things easier for him if I’d found the cancer there, too.
You’re about the sixth doctor who’s examined me here, Dr. Reilly. I don’t recall any of them being so interested in my eyes. Or my collarbones. What’s it about?
His wife watches us silently.
Mr. Principo, your left eye has a slight abnormality called Horner’s syndrome. In itself, it’s nothing to be concerned about. But it’s a sign that something in your chest is pressing on an important nerve bundle.
The fluid in my lung is pressing on a nerve?
No, sir. What I see in your eye means that there’s another problem in your chest. In addition to the fluid. Most likely, there are swollen glands in your chest, outside the lung itself, that are pressing on the nerve.
Swollen glands?
Most likely, yes. Usually we would see this on the CT scan. But there is so much fluid in your chest, it’s hard to say for sure.
So, after you drain the fluid with the tube, we will know?
That’s the question, Mr. Principo. Based on what I see, I don’t think draining the fluid with a tube is the best way to go. I will speak with the surgeons in a little while. They know more about this than I do, but I think that they will want to put you to sleep and deal with this in the operating room.
His wife inhales audibly. Mr. Principo nods calmly and takes his wife’s hand. But his eyes never leave mine.
My wife and I have talked about this, Dr. Reilly. That’s why we came here. I don’t think my lung problem is from my accident at all.
As he speaks, he watches me, gauging my reaction.
I don’t tell Mr. Principo that I think he has a cancer obstructing the bronchial tube to his left lung, a cancer that has already spread to the lymph nodes in his chest and to the lining around his lung. I don’t tell him that this kind of cancer is inoperable and incurable, almost certain to kill him in the next few months no matter what we do. I don’t tell him any of this because I don’t know it for sure yet. But he doesn’t need me to tell him. I’m a lousy poker player. Mr. Principo can see what I think without my saying a word.
If I’ve got cancer, Mr. Principo continues, I know what I want. I don’t want chemo and radiation and machines. I’m eighty-four years old. I’ve lived a damned lucky life. If it’s my time to go, I want to go fast. For my own sake, and for Helen’s.
I’ve seen death watches, doc. No thanks. Not for me.
His wife inhales deeply again. They exchange a brief, intimate look.
I tell them that they will want to know for sure before making any final decisions. I tell them that he may be right—he may have cancer—but there are different kinds of cancer, some of which are treatable, even curable.
Ms. Principo inhales again. She looks like she could kiss me. Her husband squints.
What I’ve just told them is true. Curable cancers—Hodgkin’s lymphoma and a few others—can cause similar findings. I don’t think that’s what’s wrong with Mr. Principo but it doesn’t matter what I think. What matters is that we need to find out for sure.
Mr. Principo is still squinting.
And after the surgery? Then what?
Then we’ll be able to tell you for sure what this is, what the treatment options are. At that point, it’s your call about what to do.
Mmm.
He looks at his wife, a stern conspiratorial look. She shakes her head in disbelief.
Wow, she whispers to him.
She looks at me, then at her husband.
Okay? she asks him, gesturing at me. Okay?
He looks at me for a moment, then nods again and looks away.
She takes another deep breath.
Dr. Reilly, Nick’s first wife died of lung cancer twenty years ago. They told her they could remove it. She had the surgery. The cancer was too advanced to cure. There were complications. She stayed on the breathing machine for months, one thing after another. She refused to quit even when the cancer was terminal. It was awful . . . for . . . for everyone.
Yes, I see. I’m sorry.
Mr. Principo nods at his wife. She’s crying quietly. Now he looks at me.
It was . . . very hard, Dr. Reilly. For . . . everyone. When Jane got sick, Helen and I were already . . . friends. So . . . it was hard . . . for . . . everyone.
Yes, I see.
I ask them to think more about what we’ve discussed so far. I tell them I’ll be back in an hour with Dan, whom they’ve met, and the rest of my team. I tell them that a surgical intern will see them soon and then brief the senior surgeons this morning.
Mr. Principo says he understands. Then he says he wants assurances about two things.
First, if we go ahead with the surgery, I want a clear plan. If the surgery shows that I have cancer—the bad kind, the untreatable kind—I want everything stopped. I don’t want treatment that might buy me a few extra weeks. I want out. Can you do that? Can you assure me that you will stop everything, just keep me comfortable, and let me die in peace? Can you do that?
I don’t tell him about Dad.
Yes, Mr. Principo, I can do that.
He pauses, searches my face for something, then continues.
One more thing. I’ll be on a breathing machine for the operation, right?
Yes.
After the operation, if they can’t get me off the machine, I want out. I won’t live on a machine, like my wife did. Do you understand? Even if you find something in my chest that you can treat, maybe even cure, I won’t live on a machine. Can you do that? Can you stop the machine if it looks like I can’t live without it?
Yes. If we are all agreed, yes, I can do that.
I look at his wife. She looks at her husband, then at me.
Yes, she says, biting her lip. Whatever Nick wants.
An hour later, after I’ve seen my other new admissions and talked to the chest surgeons, I’m back with my team in Mr. Principo’s room. He’s tired. His eyes are closed as Dan recounts his findings—Mr. Principo’s history, physical examination, and test results—to Tina and Ashley. Ms. Principo listens intently as Dan tells the story of her husband’s accident, his fall from the apple tree, and subsequent events. She can see Tina’s and Ashley’s frowns, their growing perplexity and doubt, as Dan describes Mr. Principo’s progressive worsening ever since, the weight loss, the apparent collapse of his entire left lung. Dan doesn’t say anything about Mr. Principo’s sagging eyelid or constricted pupil. He hadn’t noticed these things himself. Nor does he describe the subtle difference in breath sounds when listening to Mr. Principo’s lungs. But Dan has come to the same conclusion I did. He didn’t get there using my old-fashioned methods. For Dan it was high-tech all the way.
I reviewed the chest CT with the radiologist last night, Dan tells us. There’s so much fluid in the left hemithorax, it’s hard to be sure, but the left mainstem bronchus isn’t visible, likely obstructed.
Tina and Ashley begin to nod. It is beginning to make sense to them, now.
So, Dan continues, we did a head CT. It shows multiple, enhancing lesions in both cerebral hemispheres.
Tina and Ashley nod again, averting their eyes from the Principos. They know now that the apple tree is a red herring. This is inoperable lung cancer with multiple metastases to the brain. It’s not Hodgkin’s lymphoma or any other curable kind of cancer. It’s fatal. Always. Mr. Principo has only weeks to live.
Mr. Principo’s eyes remain closed as Dan finishes his story, but his wife steps forward, looks at me anxiously.
His head? There’s something wrong with his head?
I look at Dan. This is news to me, too. I found nothing on Mr. Principo’s neurological examination to suggest brain metastases. Neither did Dan. But, based on what he saw in the chest, Dan did the right thing. Strongly suspecting cancer, he looked to see whether it had spread outside the chest, the crucial clinical question. In response to Ms. Principo, I motion to Dan to explain. He does it well.
There are several spots on the brain scan that look abnormal, ma’am. We can’t be sure what these mean yet, but they’re probably related to your husband’s chest problem. We’ll know more after the surgeons drain out the fluid and give us tissue specimens to examine in the laboratory.
She looks at Dan, then at me. She doesn’t speak. Now she looks at her husband, his eyes closed peacefully.
I see, she says. She steps back, says nothing more.
Mr. Principo opens his eyes. In response to my question, he says, Yes, he’s heard everything we’ve said, including Dan’s report about the brain scan. I ask him if we can briefly listen to his lungs again. He agrees, and now Dan and the others hear the subtle difference I had heard before. I show them Mr. Principo’s eye, the sign that his cancer has invaded the mediastinum, the central chest compartment where lung cancers typically spread first. Finally, we repeat his neurological examination. It’s normal, cold normal, no sign of the cancer in his brain. All of this takes only a few minutes. When we’re done, we don’t need to articulate the obvious. My generation’s old-fashioned physical examination can tell doctors important things. But the new generation’s high-tech approach works well, too. Sometimes better.
None of this is lost on the Principos, who watch and listen as we go through our paces. When we’re done, Ms. Principo thanks us and speaks softly to her husband.
You were right, hon. You were right to come here.
He nods at her, then turns to us all.
Doctors, you don’t know my wife but she has very good taste. In everything. Clothes . . . hospitals . . . husbands.
We laugh.
Mr. Principo reaches out and shakes Dan’s hand.
Looks to me like you did pretty good, young man.
Dan, not the blushing type, blushes.
Thank you, sir.
I tell the Principos that Dan is a scientist as well as a doctor, both a Ph.D. and an M.D., a cancer researcher with a special interest in “solid tumors” such as lung cancer. I tell them that Dan’s generation of researchers will find ways to cure these kinds of cancer.
Mr. Principo is not a sour grapes kind of guy.
I hope you will, he says to Dan. Good luck, son.
Here, in the room, I don’t tell Dan and the others about Mr. Principo’s wishes. About not wanting treatment, or life support machines, once the diagnosis is proved. We’ll talk about it after we’ve left his room. Then they will all understand why Mr. Principo says what he says now.
So, Dr. Reilly, the surgeons will come to get me around midday today?
Yes, sir, that’s what they tell me.
And they might have answers to my questions right away, in the operating room, is that right?
It’s hard to say for sure, sir. But it’s possible, yes.
He nods, looks at his wife, then looks at all of us.
Then, doctors, please excuse us. We’d like a little privacy now, if you don’t mind.
• • •
Medical decision-making can be difficult for many reasons, but two of these stand out. First, there is always more than one way to manage any given medical problem; which approach to take depends, in large part, on the patient’s goals. Second, no matter which approach is taken, the outcome of every medical decision is uncertain and the possible outcomes always include harms as well as benefits. Patients typically focus more on the benefits than the harms, not always a good idea.
For these reasons, active engagement by the patient is essential to the decision-making process. Mr. Principo is most unusual in this regard. His own goals, when facing serious illness, are well informed and clearly articulated. He is well aware of the uncertainties involved; in his case, a definitive diagnosis has not yet been made. Even so, he is sufficiently self-aware to know that, for him, the worst possible outcome of his exploratory surgery is not a devastating diagnosis, but a protracted downhill course, utterly dependent on mechanical life support, with no hope of recovery. He is taking great pains to ensure that this outcome cannot happen to him. In so doing, Mr. Principo is not acting purely out of self-interest. Like many ill and elderly people, he dreads becoming a burden to his loved ones even more than he fears death itself. For his wife’s sake as well as his own, he is drawing a line in the sand. He is saying: This is as far as I go. He is specifying precise, strict limits to the types and amount of care he will allow.
Equally remarkable, Mr. Principo has done these things with no advice from me or, as far as I know, any other doctor. The limits he has drawn—their specification, timing, and contingencies—are entirely his own idea. If his goals and wishes didn’t make sense to me, I, as his doctor, would explore them more, maybe push him to reconsider. But the limits he has set make perfect sense.
Other patients might choose differently: undergo the surgical procedure—both to confirm the diagnosis and to gain some temporary symptomatic relief—and then perhaps agree to receive radiation therapy to the brain. Radiation cannot cure the metastatic brain cancers but it can shrink them and, perhaps, buy patients more time. If they survived the surgery and radiation therapy, many of these patients would then agree to undergo chemotherapy treatments to try to retard further spread of the cancer. Although the median survival of patients like Mr. Principo is only a few months despite treatment, some will survive longer (as Stephen Jay Gould reminded us). Thus, for every patient like Mr. Principo who declines treatment, there is another (like his first wife) who will embrace it. Each individual patient must decide for himself.
Today, aggressive treatment of incurable, end-stage disease in elderly patients is highly controversial. Such decisions raise many concerns about the appropriate limits of medical care that is only marginally beneficial yet extremely expensive, especially now when millions of other Americans can’t get even basic medical care. Like many other controversies about health care today, this one ostensibly is about money and budgets. How, given finite resources, can we optimize the “value” of medical care (its benefit-per-dollar-spent) equitably for all citizens? But the deeper controversy here is about values: What makes a life worth living? What makes a day or week or month of additional life worth fighting for? This is why, when doctors and patients make medical decisions, clarifying the patient’s values is the most essential step of all.
On a national scale, then, we must consider societal values when considering how, if at all, to limit medical care in the United States today. Daniel Callahan has reminded us that several deeply ingrained values in U.S. society work against any notion of systematically imposing limits on doctors’ and patients’ clinical decisions.
First, we prize autonomy and freedom of choice and want everyone to have them. . . . Second, we cherish the idea of limitless medical progress, which has come to mean that every disease should be cured, every disability rehabilitated, every health need met, and every evidence of mortality, especially aging, vigorously challenged. . . . Finally, we long for quality in medicine and health care, which in practice we define as the presence of high-class amenities . . . and a level of technology that is . . . better today than yesterday and will be even better tomorrow. . . .
Yet . . . the unrestrained embodiment of these values . . . is precisely what creates contradictions and renders meaningful reform so hard. . . . Setting limits means we cannot have everything we want or dream of . . . unlimited medical progress, maximal choice, perfect health, and profits and income.
Unlike Callahan, many people believe that “meaningful reform” of U.S. medical care does not require imposition of any systematic limits on patients’ choices, doctors’ decisions, or medical progress. Personally, I wish they were right about this. Leaving private medical decisions entirely in the hands of patients and their doctors is, and always will be, preferable. In fact, imposing limits on patient choice or medical progress feels downright un-American.
But time is running out for those who disagree with Callahan about the need for limits. More than twenty years ago, when the United States spent 11.4 percent of its gross domestic product (GDP) on health care (and 6.8 percent on education), Callahan warned that health, although hugely important, is not society’s only priority. But today, we spend 18 percent of GDP on health care (and only 5 percent on education). By 2040, health care is projected to consume 33 percent of GDP. Even if you believe that health is society’s single most important priority, these trends are unsustainable.
Most doctors believe that the “system” is beyond their control. Many believe that the call for limits can be circumvented if the government would reform medical malpractice laws (which promote costly defensive medicine); restrain insurance companies’ profit margins and administrative overhead (or eliminate them entirely with a single-payer national health insurance system); and rein in the bountiful perks of the pharmaceutical and medical device industries. No doubt these systemic changes could substantially reduce the rate of rise of health care costs. But they could also decrease the quality of care, medical innovation, and patient autonomy.
There is no simple prescription to resolve this dilemma. However, the “real money” in health care—almost two-thirds of all health care expenditures in the United States— is spent on just 10 percent of the population: patients with chronic medical conditions such as diabetes, emphysema, and heart disease. Ezekiel Emanuel and other experts have argued that only physicians can lead the effort to redesign care delivery for these patients and thereby create a more cost-efficient system. But this effort would require substantial societal investment in a new kind of health care delivery system, one with universal electronic medical records, nonphysician “care coordinators,” and less reliance on expensive subspecialist physicians. It would require “thinking outside the box” about new technologies (such as home medical monitoring systems), essential “nonmedical” services (such as transportation to doctors’ offices), and even some old-fashioned practices (such as house calls). Why has this not happened yet? Because the cost savings made possible by such system redesign can occur only if they substantially reduce unnecessary hospitalizations, emergency department visits, and referrals to specialist physicians. What do you think lobbyists for the hospital industry and physicians’ special interest groups say about such reductions?
Emanuel is right about the need for physicians to lead the effort to change the system. But which physicians, exactly, does he have in mind? Who will do this?
7:00 a.m.
It happens fast, as I had worried it might.
Mr. Warner did well overnight, Dan says, standing in the corridor outside the Step-Down Unit, no shortness of breath like the past few nights.
Good news, I’m thinking. Maybe we can buy him some time, get him through the next few weeks, eradicate his infection, let his strokes heal. Then his surgical risk might be acceptable. Maybe then the surgeons can repair his damaged heart valve, make a new man of him.
A nurse bustles out of the Step-Down Unit into the corridor, wheeling her vital signs machine behind her. She looks worried. She approaches us hopefully.
Is Mr. Warner yours?
She’s already turned up his oxygen and cranked up the head of his bed. But when we get in there he’s breathing fast and hard and beginning to fidget, agitated and restless from insufficient oxygen. Sweat glistens on his forehead and neck. His blood pressure is holding but, even with the extra oxygen streaming through his plastic nasal cannula, the oxygen reading in his blood is low. Tina runs to get a face mask and call Respiratory Therapy while the rest of us surround his bed. It’s hard to hear his heart sounds well because his breathing is so noisy and fast. His hands and feet are clammy cold. He resists the oxygen mask that Tina brings him, a “nonrebreather” that covers his face from the top of his nose to below his chin, a claustrophobic thing even if you’re not gasping for air. We hold him down, give the mask a chance to help, and in a few minutes he settles back against his pillow and closes his eyes. His breathing slows a little. His gown is drenched in sweat. The nurse clips the oxygen sensor on his finger again. The machine beeps a few times, then reads 82 percent in bright red flashing digits. We’re giving him as much oxygen as we can without putting him on a breathing machine but it’s not enough. Tina runs out to STAT-page Anesthesia and grab the ICU guys next door. Ashley rolls in the cardiac arrest cart, just in case. Dan and I try again to listen to his breathing. Loud rhonchorous noises fill his lungs wherever we put our stethoscopes.
A few minutes later, Dave, one of the ICU fellows, has intubated Mr. Warner’s windpipe after sedating him with an IV injection. He lies limp in his bed now, unconscious. Copious bloody secretions are suctioned out of the endotracheal tube, now streaming pure oxygen directly into his lungs. Still, his blood oxygen level remains low, only 84 percent.
Damn! Dave says, and checks the breathing tube for leaks. Quickly, he puts his stethoscope on Mr. Warner’s left chest, then his right.
Shit! he says, and pulls the tube back an inch or two out of Mr. Warner’s mouth, repositioning it. Now he listens again to both lungs, one then the other.
Okay, okay, Dave mutters to himself, as the oxygen sensor beeps, then flashes 96 percent in bright green digits. Carefully, Dave tapes the tube around Mr. Warner’s mouth, securing it in place. A respiratory therapist wheels a ventilator machine into the room. It’s a cabinet the size and shape of a street-corner mailbox, its surface panel covered with dials and gauges. Dave connects the machine to Mr. Warner’s endotracheal tube. Now the machine is breathing for him.
Whoosh-click-wheeze!
There are two of them now, side by side, each connected to his own breathing machine, their whooshes and wheezes like questions and answers. Mr. Warner and Mr. Hernandez, his young brain-dead roommate, are having a mechanical conversation. And what I’m hearing are Mr. Warner’s final words last night to his niece and me: Anything but that.
As usual, there are no empty beds in the ICU. They will need to move someone out to move Mr. Warner in. The ICU guys do this every day, make judgments about which patients need their lifesaving treatments most. Some days they can’t move anyone; then, they horse-trade with the other ICUs in the hospital—like the Cardiac ICU or the Burn Unit or the Neurosurgical ICU. They figure it out. Somehow, they always figure it out. In what seems like only a few minutes, the ICU guys are wheeling Mr. Warner’s bed and breathing machine and IV poles out the big door of the Step-Down Unit and down the corridor to the ICU. Now Mr. Warner has stepped up as high as he can go. If he can’t make it in the ICU, he can’t make it anywhere. Tina goes with him to do a proper hand-off, tell the ICU team what they need to know about him. There’s a lot to tell.
Dan and Ashley and I stay behind. We exit the Step-Down Unit and the strangely empty space just vacated by Mr. Warner’s bed. We have people to see—more of Dan’s new overnight admissions and all of our other patients. We have to keep our eye on the ball, even as Mr. Warner disappears down the corridor. He belongs to the ICU guys now.
Down in the ED, it’s been one of those nights when one theme seems to repeat itself. It’s random chance, of course, no real pattern to it, but sometimes it seems like the ED is running a special—on heart attacks or cancer or trauma. Last night’s special was pus. Three of our ED admissions need pus drained. One of them, a young woman nine months pregnant with her first child, has a high fever and a hot red arm, swollen from her hand to her shoulder. She received antibiotics two days ago in another hospital’s emergency department but when she got worse she came here. Dan started her on stronger IV antibiotics last night but one look at her arm this morning shows that she needs more than that. When you’ve seen one of these you never forget it, and I’ve seen many more than one, so it’s fun to walk Dan through the procedure of draining the pus out of her elbow, which, if we didn’t drain, would make her and her baby a lot sicker soon. Dan numbs the elbow with an injection of anesthetic before inserting his big drainage needle but Tina is the anesthetic that makes all the difference. As Dan and I work on the elbow, Tina canoodles with the frightened young woman about childbirth and babies—the patient’s (a girl, any day now) and Tina’s (a boy, four months to go). As the barrel of Dan’s big syringe fills with thick yellow-green pus, the young woman giggles and sighs with Tina about their latest ultrasounds and nursery preparations. Then, over the course of the next hour, Dan does the same thing to an old man’s knee—after draining what pus we can get out, we call the Orthopedics guys because he’ll need even more drainage in the OR—and then Ashley does the honors for a young guy screaming and yelling about the “royal pain in my ass.” The top of his buttock is red and sore but the ED guys have used their echo machine to see if there’s a pocket of pus in there and it doesn’t look like it, so they started him on antibiotics and admitted him to us. But now when we put a finger on his swollen butt, one particular spot hurts more than any other and it bounces when you poke your finger on it. So we numb him up and Ashley says Wow! when the pus starts to flow into her syringe, too, and the guy says Aaah! so relieved he wants to hug her even when we tell him he’ll need to go to the operating room, too. It’s one of those mornings when time seems to fly. When we’re done, Dan goes home to get some sleep and Ashley heads over to the surgical ICU—she’s thrilled that Mr. Barensky survived his pericardial tamponade yesterday—and Tina and I go back up to the medical ICU to check on Mr. Warner.
When we get there, his room is crowded with doctors and nurses, not a good sign. There are twenty critically ill patients in this ICU but most of the staff right now is working on Mr. Warner. From outside his glass-enclosed room, I peer in at the visual display of vital signs on his monitors. His oxygen level is holding steady at 96 percent on the mechanical ventilator but the digital readout shows his heart rate is in the high twenties, only one blip every two or three seconds. His blood pressure barely registers at all.
Jeez, Tina says.
I stand on tiptoes and crane my neck to see over the crowd. It looks like a scene from a movie about extraterrestrial germ warfare. Everyone is covered, head to toe, in blue floor-length gowns, some of them spattered with blood. All faces are masked, even their eyes shielded behind plastic see-through visors, splash-proofed against Mr. Warner’s HIV-infected blood. One nurse is applying round sticky pads to Mr. Warner’s bare chest. Two others are dialing up the infusion machines to pump powerful drugs into his veins to try to raise his heart rate and blood pressure. Dave, the ICU fellow who intubated Mr. Warner in the Step-Down Unit, is standing at the head of the bed, rapidly swabbing Mr. Warner’s neck and shoulder area with an orange-colored disinfectant. Josh, a senior medical resident, stands on the opposite side of the bed, pushing a syringe filled with drug into one of Mr. Warner’s IVs, his eyes glued to the vital signs monitor to assess its effect. Oren Friedman, the ICU attending, stands at the foot of the bed, surveying the scene, calmly calling out numbers, ordering this then that, everyone hopping to his commands. From where I’m standing, looking at those shrinking numbers on the vital signs monitor, it’s a disaster. Mr. Warner is trying hard to die. But Friedman’s team, gowned and masked, hushed and grim, has other ideas. They move and mesh like one multilimbed organism. They’ve done this before.
No response to atropine times two, Friedman announces to the room. Dopamine is at twenty mikes, right, Sue?
Right, someone says.
Kristen, Friedman says, set the external pacer at ninety. Sue, start the Levophed. Dave, you ready to go with the eye-jay?
Yeah, someone says.
Now Friedman addresses the senior resident, whose eyes are glued to the vital signs monitor.
What do you see there, Josh?
Looks like complete heart block with a slow junctional escape rhythm, Josh says. We need a twelve-lead but there’s ST-elevation in lead two, maybe he’s having an inferior MI.
Right. And what do you make of that?
Friedman, in the heat of the battle, is teaching.
Maybe he’s embolized his right coronary, Josh’s voice answers.
Right. Might just be spasm from his hypotension but I agree, that’s the worry. So what do we do?
Nothing we can do if we don’t get his heart rate and pressure up.
So?
Gotta have that pacemaker.
Good, Josh. Dave?
I’m in the eye-jay, someone says. Balloon is up, advancing the pacing catheter now.
Dave, the ICU fellow at the head of the bed, has inserted a big needle into the internal jugular (“eye-jay”) vein in Mr. Warner’s neck, spilling rivulets of blood on the sterile drapes covering Mr. Warner’s neck and shoulder. Through the needle Dave has threaded a metal wire into the vein and then, after removing the needle, he has passed a yard-long rubber catheter, like a long piece of spaghetti, over the metal wire and down through the vein into Mr. Warner’s heart. Embedded in this special catheter is a cardiac pacemaker wire that, if Dave can position it properly in the right ventricle of the heart, can begin to spark Mr. Warner’s heart, stimulating it electrically to pump faster and raise Mr. Warner’s blood pressure. No one survives a heart rate of twenty or a blood pressure this low for very long. It’s now or never.
Tina and I squeeze into the room at the foot of the bed near Friedman. Except for the whoosh-click-wheeze of Mr. Warner’s ventilator and the scary-slow tinny blips on his heart monitor, the room is dead quiet now. Mr. Warner himself is invisible, unconscious beneath all the sheets and sterile drapes. Can he feel any of this? Does he somehow know what’s happening?
The blips accelerate. On the monitor, spikes of heartbeat go faster now, ninety per minute.
I’ve got pacing, Dave says calmly from the head of the bed.
Yeah, Tina whispers.
Friedman says nothing. He looks at the vital signs monitor, where the pulse registers ninety but the blood pressure is still only sixty. Friedman sticks his gloved hand into Mr. Warner’s groin, feeling for a pulse.
Barely palpable, he says. Levophed on?
Just running now, someone says.
Silence again. They’re doing everything they can do.
Now the blood pressure tracing on the monitor begins to bump. What had looked like a slow feeble wave is now a sharp spike, higher and faster. Friedman sticks his hand in Mr. Warner’s groin again.
We got pressure here. Let’s move, everyone, let’s move!
Yeah, Tina whispers again.
Now, the many limbs of the organism do their thing, all of them perfectly coordinated. Dave sews the pacing wire into Mr. Warner’s neck and sets the dials on the pacemaker power box. Two of the nurses fuss with the IV pumps, adjusting the doses of the antishock pressor drugs. Another begins to clean up the mess around Mr. Warner, careful to put the blood-spattered drapes in special infection control containers. Josh wheels in an electrocardiogram machine to take another heart tracing, look for the heart attack he thinks may have just occurred. Friedman watches all of this, then nods and steps out of the room with me and Tina.
Not sure yet, Friedman says calmly in answer to my question.
He fills us in on what has happened these past few hours. The ICU team has been able to oxygenate Mr. Warner with the mechanical ventilator, but not without difficulty. His new chest X-ray shows a dense infiltrate throughout his right lung, much more suggestive of pneumonia than heart failure.
But your idea of unilateral pulmonary edema is still possible, Friedman says, and nods admiringly at Tina. Really good idea. We’ve been trying to stabilize him enough to find out for sure.
They’ve started additional antibiotics and blood pressure drugs to treat Mr. Warner for pneumonia and septic shock—he’s now receiving nine different antibiotics, including his HIV drugs—but his diagnosis is still no more than an educated guess. Friedman was planning to put a bronchoscope down into Mr. Warner’s lungs to sample the bloody fluid there, test it for infections, but that was before Mr. Warner crashed and needed the emergency cardiac pacemaker. Otherwise, Friedman has done all he can to treat Mr. Warner’s respiratory failure and to prevent kidney failure, but it may be too late; Mr. Warner hasn’t made a drop of urine since coming to the ICU. We don’t know yet whether a failing heart is the primary cause of Mr. Warner’s failing lungs and kidneys, or whether everything is failing for multiple different reasons. Either way, Friedman will need help.
A Cardiology fellow arrives, wheeling his portable echocardiogram machine.
Friedman did his own bedside cardiac echo an hour ago but he doesn’t trust the results. His echo machine is not as accurate as the cardiologist’s transesophageal echo device. This is the test Mr. Warner couldn’t tolerate yesterday. But, unconscious and intubated, he’ll tolerate it now. We need to know.
The echo probe slides down his esophagus quick as a wink. On the vital signs monitor, Mr. Warner’s numbers hold their own: His oxygen level is adequate (thanks to the ventilator); his heart rate is ninety (thanks to the pacemaker); and his blood pressure has come up (thanks to the powerful “pressor” drugs). But now, even before Friedman or the Cardiology fellow says a word, I can see the echo jet on their video monitor, right where Tina said it would be. Mr. Warner may have pneumonia and kidney failure, too. But if he does, they’re the least of his problems. It’s his blown heart valve that’s killing him.
There’s only one chance to save him now. Friedman and the Cardiology fellow confer quickly. The fellow runs off to alert the senior cardiologists and to free up one of the operating rooms in the cardiac catheterization lab. There, the interventional cardiologists can insert a catheter into the big artery in Mr. Warner’s groin, snake the catheter up into his heart, and inject dye to see whether he’s had a heart attack, treat it, and also visualize his damaged heart valve even better. Then, they can float a big balloon up into Mr. Warner’s aorta, near his heart, and start up the intra-aortic balloon counter-pulsation pump. This is a machine that sucks blood out of the failing heart into the circulation, perfusing the body’s vital organs while limiting leakage back into the lungs. The balloon pump is only a “bridge therapy”—it can’t be used for very long, typically no more than several days—but it can temporarily support the heart through a transient, treatable stress. Can the balloon pump buy him some time? Time enough for his lung to clear and his strokes to heal? Barring other catastrophes, then could the surgeons make a go at fixing his valve? It’s a long shot, but it’s the only one he’s got.
Mr. Warner’s niece, Nancy, arrives at the ICU nursing station. She looks scared. Her eyes dart from mine to Tina’s and back again. We find a place to sit and talk in the waiting room just outside the ICU. I tell her what we know. She’s a quick study. As she assimilates the new information, she becomes increasingly distressed.
I don’t know . . . if he would want this, Nancy says. He . . . he seemed . . . ready . . . he seemed . . . like maybe he’d had enough. I don’t know . . .
She asks if she can see him. We take her there.
As we reenter the ICU, alarm bells are sounding somewhere. A monitor is ringing. Someone’s in trouble. Down the corridor, we see a nurse and a resident and then Friedman run into Mr. Warner’s room.
Bing-bing-bing-bing-bing-bing-bing!
Mr. Warner’s heart—so slow, so close to stopping just a few minutes ago—is now banging like a trip-hammer on a fire bell. The nurse checks the monitor and his blood pressure.
Sixty systolic, she says.
Bing-bing-bing-bing-bing-bing-bing!
Josh, the resident, reads the heart tracing on the monitor.
One-eighty, irregularly irregular, narrow complex. Ay-fib, he says to Friedman.
Bing-bing-bing-bing-bing-bing-bing!
Cool as ice, Friedman speaks calmly to one of the nurses.
Get the paddles, please. Fentanyl and Versed, too.
Mr. Warner’s niece has entered the room behind us. Wide-eyed, she surveys the scene. She hasn’t seen her uncle since last night. Unconscious, plugged into monitors and IV pumps and the breathing machine, he looks like Mr. Hernandez, the brain-dead guy in the Step-Down Unit.
Bing-bing-bing-bing-bing-bing-bing!
Oh, God! Nancy exclaims out loud.
Friedman sees her, and shoots a disapproving look at me and Tina.
We’ll need to ask you to excuse us for a few minutes, ma’am, Friedman says.
What . . . ?
A nurse pushes past Nancy with the fire-engine-red code cart.
Ma’am? Friedman says again, then nods at Tina, his eyes wide. Tina takes Nancy’s elbow and ushers her out of the room.
Bing-bing-bing-bing-bing-bing-bing!
Versed two, Fentanyl one hundred, Friedman tells the nurse. He motions for Josh to grab the defibrillator paddles, grease them up with goo.
Settings? Friedman quizzes Josh.
Uh, synchronized, Josh says. A hundred joules?
Start with seventy, Friedman says. Then, we’ll see.
Josh waits just long enough for the nurse to push the two sedative drugs into Mr. Warner’s IV. Then he yells, Charge! Everybody off? Everybody off!
Bing-bing-bing-bing-bing-bing-bing!
Josh presses the buttons on the cardioversion paddles. Mr. Warner’s whole body jumps with the shock.
Then everything is quiet.
BP ninety, the nurse reports.
Sinus rhythm, one-ten, Josh says.
Friedman turns to the head nurse.
Marsha, stop the dopamine, restart the Levophed. Remember, we’re shooting for one hundred. Some urine output would be nice, too, if you could arrange that, please.
Marsha rolls her eyes. I’ll see what I can do, she says.
Friedman remains for a few minutes, reviewing the cardioversion procedure with Josh.
Outside the room, Nancy is wringing her hands. Her right eyelid twitches nervously.
I don’t know, she says, I don’t . . . I don’t think he would want . . .
Nancy looks at Tina, then at me.
Dr. Friedman, she says, he looks very . . . young.
Friedman does look young, not much older than Tina, but he’s been a critical care attending here for several years. I tell Nancy this—and more.
Maybe you saw him on the news a few months ago, ma’am. He was on all the TV shows. He’s the one who saved that guy who arrested on the subway. The one who had no pulse for more than an hour? Friedman used the new resuscitation techniques—body cooling, they call it, post–cardiac arrest hypothermia—to bring the guy back. A week later, the guy walked out of the hospital smiling, healthier than ever. The TV people called the patient Lazarus, Friedman a miracle worker. Oren told the TV people he was just doing his job.
Oh, Nancy says, as Friedman comes out of Mr. Warner’s room toward us.
Oren tells us that the immediate crisis is over. Mr. Warner is sleeping now. He’s very unstable. Yes, ma’am, he could die. Our only hope is to buy him some time, as we just discussed.
Nancy thanks him. Then she says her uncle told her last night that he didn’t want any “heroics.” That’s what he told me, she says.
A look of doubt flits across Oren’s face. He turns to me.
He was willing to have the surgery, right?
Oh, yes, Nancy answers. He was very disappointed when he heard it couldn’t be done. He wanted to try.
Friedman explains that what we’re contemplating now is not nearly as risky as the surgery.
He may not make it, ma’am, Friedman says. But I recommend that you let us try. If it looks like it’s not going to help, or if you think he is suffering more than he would have wanted, we can stop. We can always stop.
Nancy looks at Friedman, then me, then Tina. She looks past us toward the room where her uncle lies. Her eye twitches. Then she nods, looks away.
A short time later, the caravan is moving, taking Mr. Warner to the cardiac cath lab, where the cardiologists will install the balloon pump. All told, he needs seven people just to transport him there. Two orderlies push the big bed. A nurse and a respiratory therapist push the ventilator machine while holding Mr. Warner’s breathing tube in place. Josh, the senior resident, and another nurse wheel the IV poles and temporary pacemaker machine. A third nurse takes up the rear, pushing the red cardiac arrest “crash cart,” just in case. Slowly, the caravan exits the glass-enclosed ICU room, rolls down the center hall, then heads out the big double doors into the main hospital corridor. Inching along, it looks like a giant mechanical spider, its many legs stepping tentatively in tandem. At its center, Mr. Warner’s unconscious head is visible above crisply tucked sheets, his white hair neatly combed by the nurses for the trip. When he starts to move in his bed, Josh thinks he’s waking up, his sedatives wearing off, and Josh gently tries to restrain him, all those life-support wires and IVs so precarious, so easy to disconnect. But then Mr. Warner is arching his back, his torso lifted violently off the bed, as if possessed by demons. He begins shaking, rattling the whole bed, his eyes open wide and look up to his left, staring, terror-stricken by something there, over there. The seizure lasts about thirty seconds; it seems a lot longer. Patients and visitors in the corridor stop and back away, physically repelled, their hands held up to their faces. Still, they can’t stop watching as Mr. Warner’s body seizes up, unconscious, fighting off Josh and the respiratory therapist as they try to keep breathing for him. Only a short way down the corridor, it looks like a long way to go to the cath lab, so Josh yells Stop! Stop! and then the giant spider is scrambling in reverse, scuttling back to the ICU. The portable monitor shows a heart rate of thirty and no blood pressure and Josh hopes this is just an artifact from the seizure but, when they get Mr. Warner back into his room and Friedman rushes in, the heart rate is still thirty and Mr. Warner has no blood pressure and he’s limp, postictal, drooling around his breathing tube. Luckily, only one of his lines has been disconnected and the external pacemaker pads are still taped to his chest and in a flash the pacer is activated and the Levophed is running into his big IV line again and soon the spikes reappear on his pulse monitor, one hundred beats per minute. But Friedman can’t feel any pulse in his groin and neither can Josh in his neck. They dial up the Levophed to try to raise blood pressure and then the cardiologists arrive and reposition his pacemaker wire and then it captures just the way it should but still there is no blood pressure and then the monitor rings ventricular fibrillation—bing-bing-bing-bing-bing-bing-bing-bing-bing-bing!—and they shock him once and then again and they give the epinephrine and calcium and everything else and then they shock him again but nothing happens and then they shut off the pacemaker to see what they can see and all there is now is a long, flat line and they turn the pacer on again and it captures as it should, one hundred beats per minute, but still Friedman can feel nothing in his groin. The cardiologists put their echocardiogram probe on Mr. Warner’s chest and there it is on the video screen, his heart not moving, not beating at all, even as the pacemaker fires.
Now everything is quiet, all but the whoosh-click-wheeze! of the ventilator and the low dull drone of a long flat line on the heart monitor.
Friedman addresses the room.
I’ve got asystole with paced pulseless electrical activity.
No one speaks.
Any questions?
Friedman looks at the monitor again, then at his wristwatch.
Time of death is 1:33 p.m., Oren says. Thank you, all.
• • •
Rationing? Few people would use the “R word” when reflecting on Mr. Warner’s illness and treatment. For years, he received expensive, lifesaving antiretroviral drugs for his HIV disease. During the final two weeks of his life, he received state-of-the-art hospital care. True, his doctors didn’t do “everything”; Mr. Warner did not undergo open-heart surgery to replace his infected heart valve, but this decision had nothing to do with rationing; it was made because Mr. Warner’s doctors believed that surgery would do more harm than good. And yet, if Mr. Warner was not a victim of medical rationing, doesn’t this mean that someone else was? Medical rationing happens every day in the U.S. health care system. And, yes, this means that some people get what they need only because others get less.
Medical insurance—and, indirectly, the price of medical services—is the principal means used to ration health care in the United States today. The well-known fact that the medically uninsured are medically underserved is only one (egregious) aspect of this phenomenon. Another is that medical insurance has its own “rationing function.” In order to limit overuse of health care services, all medical insurance policies refuse coverage for particular services in particular situations. Unless the patient is willing to pay out of pocket for these uncovered services, it is the insurer who decides “which patient will receive which services when.” Thus, all medical insurers ration health care in two ways: They decide which patients they will (and won’t) insure; and, for the patients they insure, they decide which services they will (and won’t) pay for.
Rationing by private insurers is unique because they inject profit motives into these calculations. This distorts insurance-mediated rationing so irrationally that Lester Thurow, a noted economist, questioned whether “insurance” has any place in a rational health care system.
Insurance is an appropriate remedy in situations where there is a small probability of a disaster that will incur large fixed losses. Fire insurance is the best example. Only a few of us will be unfortunate enough to have our house burn down, and the maximal loss is fixed by the value of our house. We therefore pool our risks and compensate those who suffer losses. . . .
But the probability that each of us will incur large health expenditures before death is becoming almost universal. In this circumstance insurance becomes not a pooling of small risks but . . . a pass-through system in which the insurance companies [take] a management fee that depends on total expenditures. . . .
The result, not surprisingly, is a system with exploding expenditures.
Mr. Warner’s care was not rationed by his medical insurance; he was covered by a “Cadillac” private policy that supplemented his Medicare benefits. He was a man of means; if he had any outstanding medical bills after his death, his heirs had little difficulty paying them. In addition, Mr. Warner was a well-educated, Caucasian, English-speaking American citizen who received attentive, preventive medical care in a geographical region (Manhattan) where the overall use (and cost) of health care services is very high. In other words, Mr. Warner’s care was not constrained by any of the other (noninsurance) “mechanisms” that irrationally ration health care in the United States today: racial and class prejudices; cultural, language, and ethnic barriers; low levels of health literacy; lack of primary and preventive care; and unscientific medical practice variations that (unintentionally but systematically) underserve many patients, including some with insurance. In all of these respects, Mr. Warner was on the lucky end of the rationing seesaw.
But make no mistake: Mr. Warner received “enough” medical care in part because others received less. For example, the level of hyperacute, sophisticated care he received on his last day of life can be provided only in an intensive care unit. Mr. Warner received this care only because Dr. Friedman and his team, under duress, made room for him in their fully packed ICU by moving another patient out. This kind of rationing—the real thing, in which doctors’ decisions weigh one patient’s need for intensive care against another’s—happens every day in U.S. hospitals. And, although many hospitals are building many more (very expensive) ICU beds, all experts agree that the increasing number of sick, elderly patients will continue to outstrip our expanding ICU capacity—and make this kind of rationing even more frequent in the future.
Rationing is not restricted to intensive care units, nor is it a new phenomenon. Thirty years ago, for example, doctors never would have entertained even the possibility of open-heart surgery for Mr. Warner, an unthinkable treatment for a patient with (then universally fatal) HIV infection. In fact, in those days it was generally agreed that otherwise healthy elderly patients were not “candidates” for open-heart surgery either. Why? Because they were old. Today, thousands of elderly people safely undergo open-heart surgery every year (as do many patients with HIV disease). Medical progress, then, may decrease the “irrational rationing” of some clinical services (such as heart surgery for old people) but simultaneously increase the need for “rational rationing” of other services (all of those elderly heart surgery patients need ICU beds).
It seems obvious, then, that we need authoritative, rational, transparent methods to ration finite resources. But, with the notable exception of solid organ transplantation, this has been easier said than done. Neither health care payers nor providers have led the way. As a result, today’s doctors are stymied, trapped like Homer’s Odysseus between Scylla and Charybdis. Our Scylla has been described thus:
In caring for an individual patient, the doctor must act solely as that patient’s advocate, against the apparent interests of society as a whole, if necessary [my italics].
When practicing medicine, doctors cannot serve two masters. The doctor’s master must be the patient.
According to this view, when doctors “serve” their patients, how much it costs (and who pays for it) is not the doctor’s problem.
In some cases, this attitude is self-serving. Under current fee-for-service reimbursement rules, doctors make more money by providing more services, even when the marginal benefit to patients is vanishingly small or very unlikely. But why would doctors behave otherwise when we can easily convince ourselves that our patient might benefit from such services—and might sue us if we don’t provide them? More important, individual doctors have no reason to believe that rational rationing (practicing high-quality, cost-effective medicine) for their own patients will make the U.S. health care system more equitable or cost-effective overall. In the U.S. health care system, uncontrolled by a central budgetary authority, there is no mechanism whereby one doctor’s wise rationing of resources will help fund more or better care for other doctors’ patients. In such an “open-ended” system, why not offer (probably futile) cancer treatments to Mr. Principo—or my father? Why not offer (probably futile) heart surgery to Mr. Warner?
In contrast, doctors’ Charybdis has been described this way:
It will be far better if American doctors begin to build up a social ethic and behavioral practices that help them . . . disseminate better information on the cost-effectiveness of alternative medical techniques for treating different ailments. . . .
Like it or not, Americans are going to have to come to some social consensus concerning the trade-off between costs of medical services and the life-extending benefits that result.
Health care costs are being treated as if they were largely an economic problem, but they are not. To be solved, they will have to be treated as an ethical problem [my italics].
Ethicists have suggested that doctors can best navigate between our Scylla (serve each patient as best we can, regardless of cost) and Charybdis (ration finite resources cost-effectively) by first clarifying our central obligation to patients. In this view, our job is not to do everything that might benefit our patients; our job is to partner with patients to help them decide (and receive) the care that is best for them. But to fulfill this daunting obligation requires a meaningful, value-sharing doctor-patient relationship, a loss leader in today’s business-driven health care system. And, even if we could resuscitate these relationships, systemic demand for more medical care will continue to grow inexorably, apace with new scientific discoveries and our aging population. What to do, then?
Daniel Callahan, who recognized the inevitability of rationing decades ago, proposed a radical solution. Rather than ration health care as U.S. society does now—irrationally, inequitably, and ineffectively—ration health care for the elderly. Explicitly and systematically, deny expensive curative medical treatment to those who have completed their “natural life span.” For patients who are very elderly (above age eighty-five), restrict use of health care resources to caring, not curing: Relieve their suffering and support their quality of life as best we can while letting nature take its course. No heart surgery, no intensive care units, no cancer treatments for old folks.
Callahan’s proposal, of course, was dead on arrival. Everyone shoveled dirt on its grave: politicians, geriatricians, medical researchers, even feminists (because women, on average, live longer than men). Many of them believed that health care rationing is not inevitable (even though it’s been a fact of life for decades). Others protested that age-based rationing would be inequitable because wealthy old people would find ways to get around it (which they do). Still others insisted that life-prolonging medical care should be rationed according to the likelihood that a patient will benefit, not the patient’s age (though this is what doctors do now, with mixed results). Finally, some worried that Callahan’s proposal—so concrete, so easy to administer—might be too easy, a slippery slope leading to even more draconian exclusions as societal medical costs continue to rise.
But Callahan, well aware of these objections, proposed that U.S. citizens, young and old alike, consider his idea seriously and enact it democratically. Why would sane people choose to do this? Because, in Callahan’s view, it is the most ethical way to ration health care, an essential step to preserve the medical commons and achieve other societal priorities (such as education, national defense, and a living wage). In Callahan’s view, we can’t have it all. Limits must be set; why not use our natural limits, our mortality, to set them?
I suspect that Callahan’s ideas might have gained more traction had he presented them satirically, along the lines of A Modest Proposal, the famous essay by Jonathan Swift, author of Gulliver’s Travels. Tongue in cheek, Swift had proposed in 1729 an “easy solution” to the abject poverty of his native Ireland: Poor Irish peasants could sell their infant children as “a most delicious, nourishing and wholesome food” to their rapacious landlords, “who, as they have already devoured most of the parents, seem to have the best title to the children.” Like Callahan, Swift’s proposal had appealed to intergenerational justice in pursuit of a shared societal goal. But, unlike Callahan, Swift also made people laugh. And that’s what got them talking.
Americans need to start talking, too, and a little levity might help. Age-based rationing of health care won’t happen anytime soon—nor should it, in my view. But if we don’t find a rational, ethical, democratic way to set limits on medical care, we will have no choice but to enforce partisan budgetary fixes for a problem that budgets (and partisanship) can’t fix. As our society struggles, painfully, to find that better way, laughter may be our best medicine.
6:10 p.m.
She holds sheaves of paper in both hands. She’s not crying. She doesn’t look angry. She just wants to do the right thing. She promised her husband she would.
The papers in Helen Principo’s left hand are the notarized advance directive documents that her husband brought with him from home. They say he doesn’t want cardiopulmonary resuscitation or treatment with a mechanical breathing machine or lifesaving interventions of any kind, under any circumstances. It’s an unusually explicit, absolute, and unambiguous statement of his wishes, lacking any contingent provisos about “terminal” diseases or “futile” treatments so often found in living wills and other such documents. The papers in Ms. Principo’s right hand are the medical power-of-attorney documents designating her as her husband’s sole legal decision-maker in the event he becomes incapacitated to make medical decisions for himself. Right now, she is extending her hands toward me, holding up these papers with an anxious, skeptical look: I don’t get it, she says without speaking, what is going on here?
Whoosh-click-wheeze.
We’re in the CTICU, the Cardiothoracic Surgical Intensive Care Unit, several hours after Mr. Principo came out of the operating room. He did well during his video-assisted thoracic surgery. The surgeons drained the fluid from his chest, biopsied various tissues in and around his lung, and brought him to the recovery room in good shape. Two hours later, he looked so good they removed his breathing tube and helped him wake up, cough, take deep breaths, visit briefly with his wife. But soon they saw that he was struggling, unable to cough up the phlegm in his throat, still too weak to breathe on his own. So, the Anesthesia folks put him to sleep again, reinserted his breathing tube, hooked him up to the ventilator, and brought him here, to the CTICU.
Whoosh-click-wheeze.
Helen shakes her head as she watches the machine inflate her husband’s lungs. His eyes are closed. He looks comfortable. Narrow strips of white tape tether the clear plastic breathing tube to his mouth. Electronic infusion pumps drip intravenous fluid into his veins. Wide swaths of tape cover his torso, a big drainage tube bubbling fluid and air from his chest cavity into round plastic containers. His heart monitor bleeps softly, his pulse rate reassuringly normal. As these things go, he looks good. Helen doesn’t think so.
I thought we weren’t going to do this, she says.
This morning, as part of the informed consent process for his surgery, Mr. Principo agreed to temporarily “suspend” his advance directive for the perioperative period. You can’t do this kind of chest surgery without a breathing machine. And you can’t ask the surgeons to operate but simultaneously tie their hands, tell them they’re not allowed to rescue the patient if he crumps on the operating table or in the recovery room. If you’re serious about wanting the surgery, you have to agree to let the surgeons do whatever it takes to get you through it. Then, after you’ve come through it, you can “reinstitute” your directive that no further lifesaving interventions be done. In other words, right now Mr. Principo is in limbo, out of surgery but not “through” it, still recovering from the effects of anesthesia.
We discuss this. I tell Helen that her husband may need another twelve to twenty-four hours on the machine before we can remove his breathing tube again.
And then?
Then, we’ll see how he does without it.
And if he’s still too weak? You won’t let them put him back on the machine again, right?
I hesitate for a moment. Officially, I am no longer Mr. Principo’s attending physician. Here, in the CTICU, the surgical critical care specialist is the attending-of-record for all patients. I wrote the official order to suspend Mr. Principo’s advance directive this morning. But, as long as he’s here in the CTICU, legally I can’t write the order to reinstate it. Does Helen Principo need to know, want to know, these arcane matters of hospital policy and law? I don’t think so.
Ma’am, I will make sure that we do what your husband asked us to do. Right now, as you know, we don’t have a definitive diagnosis yet. The fluid from the lung shows abnormal cells. Almost certainly, as we discussed earlier, this is cancer. But we haven’t proved it yet for sure. More tests will be done on the fluid and the tissue biopsies. While we wait, let’s let him rest, recover from the anesthesia. We’ll support his breathing overnight. We’ll keep him comfortable. We’ll know more tomorrow.
Whoosh-click-wheeze.
Helen looks at her husband, shakes her head, then looks at me.
This is exactly what he was afraid of, Dr. Reilly. If he were watching us right now, he would be furious. This is what Jane looked like—his first wife—for all those weeks and months while he waited for her to die. He wouldn’t believe it if he could see himself now.
It won’t be like that, ma’am. I promise. We will honor his wishes, as we said we would.
Biting her lip, she looks at her husband. Then she nods, says nothing.
Whoosh-click-wheeze.