None of us is as smart as all of us.
—Japanese proverb
7:45 a.m.
The hospital’s fourteenth floor is for rich people. This is New York, so let’s be clear about rich: If you’re willing to pay an extra sixteen hundred dollars per night, in addition to the astronomical hospital bill you (and your insurer) will receive anyway, the fourteenth floor is the place for you. In return, you receive magnificent views of the Manhattan skyline; a solicitous, manicured concierge at the front desk; a hushed, luxurious ambience; an enormous private room with an extra bed for family or friends; and a customized menu from a special kitchen whose chef will prepare whatever you want whenever and however you want it. Compared to some high-end Manhattan hotels, this is a pretty good deal, so some patients who can afford it want to stay even longer than their medical condition requires. For every one of those, though, there are many others whose presence on the fourteenth floor serves as a daily reminder that you can’t take it with you.
Mr. Atkins is one of those. An architect in his early fifties, he was helicoptered in last night from a wealthy town on Connecticut’s gold coast. For several years now he’s been receiving various experimental treatments in Boston, at Sloan Kettering across the street, and here for a rare kind of pancreatic cancer. He hasn’t been eating for the past few weeks and yesterday he became so weak he almost passed out. An oncologist here arranged his urgent transport to New York Presbyterian. When I saw him briefly earlier this morning, he was sleepy but his only complaint was discomfort in his right upper abdomen. I didn’t spend much time with him then because, after I put my hands on the place where he said his belly hurt, I knew I would be spending a lot more time with him later today. In the place where his liver should be is a rock-hard lumpy mass the size of a basketball; it feels like there’s more cancer in his liver than there is liver. Tina’s admitting note in the computer shows that she saw Mr. Atkins around midnight and found the same things I found this morning. She wrote orders for pain medicine and left a message for the oncologist who had arranged his transfer here.
All of this sounded right to me, especially Tina’s concluding remark in her admission note: “Not sure whether we have any further active treatment to offer this unfortunate patient. Will contact Oncology. Would strongly consider palliative care.”
Smartly dressed attendants and attractive waitresses pass us in the oak-paneled corridor. Tina suggests that she not present Mr. Atkins’s case at his bedside, as we did with Mr. Warner. Ordinarily, I prefer the bedside because most patients, when you ask them, want to hear what their doctors are saying about them. But I haven’t spent enough time yet with Mr. Atkins to know what he knows or what he’s expecting or what his hopes may be. So I defer to Tina’s judgment about this and we gather together outside his room.
It takes Tina only a few minutes to tell the team about the inoperable metastatic neuroendocrine carcinoma of the pancreas; the many standard and experimental therapies Mr. Atkins has received; what Tina found last night on his physical examination and laboratory tests; and, finally, a summary of her own impressions and recommendations. She looks at me when she says that this rare type of pancreatic cancer sometimes has a better prognosis than the more common type but she doesn’t know if there are any more experimental treatments still left to try.
He’s still a young man, Tina concludes sadly. His kids are in grade school. So I hope Oncology has something to offer him, but . . . I don’t know . . .
Chris asks Tina whether Mr. Atkins’s cancer has caused any “paraneoplastic syndromes.” It’s a good question, because this rare kind of neoplasm arises in cells of the pancreas that normally make insulin and other hormones. Sometimes these wildly proliferating cancer cells continue to perform their normal functions; in such cases, they manufacture massive amounts of these hormones, which can cause the patient to have low blood sugar or high blood pressure or various digestive troubles that can be as difficult to treat as the cancer itself.
Despite her busy night, Tina has done her homework and reviewed all of Mr. Atkins’s previous medical records, a big job. His blood and urine tests for every hormone associated with this type of cancer have been normal.
Chris has heard that this is often a poor prognostic sign. I’ve heard the same thing: When these types of cancer cells don’t function well enough to manufacture their hormones, they tend to spend all their time and energy multiplying and metastasizing, not a good thing for the patient.
You may be right, Chris, but if you want to know this poor guy’s prognosis, you don’t need many fancy tests. You’ll see what I mean when you take a look at him—and feel his belly.
Hmmph, Dan says.
Dan is an intern, a lanky, athletic, laconic guy very different from Chris, who is geeky, slightly built, and hyperkinetic. Chris is the senior resident but Dan is several years older. Before beginning his clinical training this year, Dan completed not only his M.D. degree but also a Ph.D. in molecular biology to prepare for his career as a cancer researcher. He’s a scientist—a skeptic, a Doubting Thomas, by training. I’ll make sure Dan feels Mr. Atkins’s belly, too.
As we begin to enter Mr. Atkins’s room, Julie, our team’s other patient on the fourteenth floor, staggers drunkenly into the corridor from her own room two doors down. She grabs her IV pole with both hands, struggling to regain her balance, then turns 360 degrees to get her bearings before heading in our direction. Her constant companion, Gordon, is right behind her. Together, they move slowly toward us—Julie scowling and titubating, her face swollen and pasty gray, her eyes half shut; Gordon, movie-star handsome, buoyant despite his customized wheelchair, smiling his world-class, toothy grin. As they approach, Gordon raises a hand from his wheelchair and waves at us impishly.
Good morning, doctors! he says, his tone hushed and deferential yet brimming with delight. Gordon is the spitting image of Sidney Poitier in his prime, right down to his mellifluous speaking voice. He is so happy to see us. Life is grand, isn’t it? he seems to say, his gaze lingering slightly longer on Tina and Leah, the two women in our group. Despite themselves, they melt a little. When he looks at me, it’s hard to tell whether his smile is courteous and grateful—or cocky and in control.
Gordon’s a piece of work. Julie’s a mess. What I don’t know yet is whether Julie’s a mess because Gordon’s a piece of work.
When Julie first arrived here three days ago she was barely conscious, worrisome enough that we considered putting her in the ICU. Now she has improved dramatically. This morning is the first time I’ve seen her standing. She’s taller than I thought, nearly my height, surprising for an Asian woman. I wonder what Julie looks like when she’s not all puffy, dried out, and groggy from myxedema, the life-threatening thyroid deficiency that landed her in the hospital. Again. It’s the third time this has happened to her in the past eight months.
Why this is happening is a mystery. Prevention of myxedema in patients with thyroid deficiency requires nothing more than taking one pill a day to maintain complete normality. Not taking the thyroid pill can make you more than drunk and ugly; it can kill you. So how does this happen—not once, but three times? Julie and Gordon claim that they have solved the mystery. After consulting many specialists over the past several months, they found a “genius” endocrinologist who explained that Julie must not be able to absorb the thyroid pill from her stomach into her circulation. Theoretically, such selective malabsorption is possible, but there is only one reported case of this phenomenon in the entire world’s medical literature and there’s something about Gordon’s shit-eating grin that makes me think Julie is not the second. When we hospitalized her, we tried to contact the genius endocrinologist but his telephone had been disconnected with no forwarding address. This did not inspire our confidence. Neither did the other specialists whom Julie and Gordon had consulted; when we called them, most of them just groaned and said, Best of luck with those two.
I’ve met many remarkable patients in my life, people who endure extraordinary disabilities yet seem genuinely happy and grateful to be alive. But Gordon gives me the creeps. He looks to be about thirty, at least a decade younger than Julie. I’ve asked him about his wheelchair in an offhanded way, not wanting to seem to pry. (I’m doctoring his girlfriend, not him, so it’s really none of my business.) All he said was that he’d had an accident several years ago and injured his back. Several years ago. But sitting there, grinning in his wheelchair, Gordon’s legs look beefy and strong, not wasted as one would expect of a chronic paraplegic. And I cannot ignore the fact that Gordon proudly claims to “supervise” Julie’s medical care. Why she needs such supervision is unclear, but it is Gordon who makes sure that Julie takes her thyroid pill every day.
Now my team and I watch as they pass us in the corridor. (Yes, we’ll be in to see you soon, Julie, we’re seeing our other patients now.) The whole scene is bizarre: a wealthy cretinous woman and her handsome crippled consort, basking in the luxury of a hospital’s VIP amenities while she recovers from a near-fatal illness that shouldn’t have happened even once, much less three times. It pisses me off. Here we are, trying to help our patients get better—or, as we’re about to do with Mr. Atkins, help them die in peace—while these two characters are jerking us around, wasting our time, using us. Worse, I’m the one who has to get to the bottom of it. Whatever is going on here, Julie’s life is in danger. Whether I like it or not, she and Gordon are my problem now.
Farther down the hall, Julie totters next to Gordon, using her IV pole and his wheelchair to steady her gait. Gordon turns and looks back at us, watching. That grin again.
Have a wonderful day, doctors.
• • •
Medical care in the United States is a buyer’s market. Not in the sense that it’s cheap. Far from it. Medical care is far more expensive in the United States than anywhere else in the world. It’s a buyer’s market in the sense that most of us can get what we want when we want it. This might be a good thing if it were true for all of us (it isn’t) and if all of us really needed what we want (we don’t).
Persuasive research has shown that about one-third of all medical care in the United States is unnecessary, that is, wasteful, redundant, or ineffective, providing no net benefit to patients’ health. Examples of this are everywhere. MRI scans costing thousands of dollars to evaluate trivial, self-limited symptoms. Expensive new drugs that work no better than cheaper old ones. Hospitalized patients who undergo the same battery of tests every single day even though these tests were normal yesterday and there is no reason to think they will be abnormal today or tomorrow. Frequent return visits to doctors’ offices, scheduled not because patients need them but because doctors’ schedules want filling. Outrageous administrative costs of countless different for-profit insurers. Having spent the past twenty years working in hospitals where most of the patients were poor and uninsured, I’ve seen too many people in the United States suffer or die because they couldn’t get the care they needed—even as many others received care they didn’t need at all. But, even if you’ve had no personal experience with these (sometimes tragic) inequities, it’s important to know that inefficient, wasteful use of medical resources in the United States is hurting everyone, including you. Reducing unnecessary care would go a long way toward making medical care more available, and more affordable, to us all.
Part of the problem is the definition of “unnecessary.” Are the fancy flat-screen televisions, oak paneling, and gourmet chefs here on the fourteenth floor of New York Presbyterian Hospital “necessary”? Wealthy people, who willingly pay the extra cost, seem to think so. But such hospital amenities are no longer relevant only to Wall Street tycoons and oil-rich sheikhs. Many U.S. hospitals now spend enormous sums to upgrade their “hotel” accommodations. Then they market these creature comforts directly to patients. Just as drug companies and medical device manufacturers gain market share by advertising their products directly to patients in the mass media, hospitals attract patients by promising a more comfortable “nonclinical experience” to their “guests.” In fact, in a McKinsey study of this new business model, patients reported that, when choosing among hospitals, they considered the hospital’s amenities twice as important as its reputation for high-quality medical care!
Don’t get me wrong. Making sick patients more comfortable in the hospital is an admirable goal, but how much these amenities cost (and who pays for them) has become an increasingly important question. As we struggle to define the value of medical care, how will we measure its quality? Will we include patients’ satisfaction with their “nonclinical experience” in the hospital? How about the “appointments” in doctors’ offices? Are the chairs in the waiting room plush enough? Are the magazines up to snuff?
The generic question here is how to accommodate what patients want when what they want is largely a matter of personal preference and provides no known benefit to their health. This issue is not limited to hospital amenities. A much larger problem is the enormous amount of unnecessary medical care provided to patients because it reassures them, despite a lack of scientific evidence that it benefits them in any other way.
For example, do low-risk women under age fifty ever get breast cancer? Yes. Then performing annual mammograms for such women will save lives, yes? No. Do elderly men ever get prostate cancer? Yes. Then offering these men a PSA test (the prostate cancer blood test) will save lives, yes? No. Do adults with acute bronchitis (a chest cold) ever develop pneumonia? Yes. Then prescribing antibiotics for these patients will prevent pneumonia, yes? No. (Well, then, at least the antibiotics make the patient feel better faster, right? No.)
But try telling these folks that the mammogram, prostate test, or antibiotic is “unnecessary.” (In fact, in some cases, it’s worse than unnecessary, it’s harmful.) A few patients listen. Most don’t. Not surprisingly, many doctors have given up trying. That’s probably why Julie and Gordon have been able to wheedle what they want from some of the doctors they’ve seen.
Educating patients about unnecessary medical care doesn’t get much traction in the United States because it’s essentially a conversation about cost-effectiveness, a subject about which most Americans (including doctors) know little and care less. People need what they need—and, in health care, our needs are largely conditioned by what Daniel Callahan calls “regnant social expectations.” Individual patients and doctors don’t deserve all of the blame for this mess. Often, unnecessary care reflects a local “culture” of medical practice that tacitly condones patients’ excessive expectations and doctors’ cost-inefficient behavior. Manhattan and Miami, for example, rank high on the scale of unnecessary care; Minneapolis and San Francisco do not. Just as all politics is local, so, too, is medical care. This phenomenon, exhaustively documented and deeply ingrained in regional medical cultures, illustrates how difficult it will be to reduce unnecessary care nationwide in our fragmented health care system.
Sadly, most of the research documenting wide variations in cost-effective medical care comes from studies of patients whose death is near. In some regions of the United States, terminal patients routinely receive futile treatments, remain in intensive care for weeks, or undergo “lifesaving” surgical procedures. Then, as expected, they die. “Unnecessary” doesn’t begin to describe this kind of medicine; neither does “care.” But, as many Americans know—including Julie and Gordon—you can buy it if you want it.
• • •
A small vestibule separates Mr. Atkins’s room from the main corridor, another special amenity on this floor that enhances patients’ privacy. As we open the door, twenty-foot-wide floor-to-ceiling windows frame the rising sun, its white winter light spilling across the river from Queens and Long Island to our east. The large guest bed by the window is empty. In the center of the room Mr. Atkins lies peacefully, his eyes closed, much as he looked when I met him earlier this morning. Now, though, his gaunt face and torso are bathed in brilliant sunlight. It’s a stark, striking scene, beautiful in its way, a modern pietà sans Madonna.
We shield our eyes against the sun as we approach his bed. Leah moves to the window to draw the shades.
Tina touches his shoulder gently.
Good morning, Mr. Atkins, I’m Dr. Johansen, remember? We met last night . . .
He doesn’t open his eyes. He doesn’t move.
Mr. Atkins . . . ? Tina repeats.
Nothing.
Mr. Atkins . . . ?
I go to him and feel his pulse. It’s strong and regular. His breathing looks normal. He is emaciated and pale, more noticeably now in the sunlight, but no different than earlier.
Mr. Atkins, I say loudly. I shake him at his shoulders.
Nothing.
I shout his name, louder still. I lift his lids with my fingers. His eyes loll, unseeing. Uh-oh.
I press my fist into his chest, hard.
Nothing.
Chris bolts from the room, yelling down the corridor for a nurse. Dan grabs a blood pressure cuff and wraps it around Mr. Atkins’s arm. Tina tries again to arouse him by tugging hard on his ears. I check his IV; it’s running slowly, normal saline dripping into his arm, no medications piggybacked into it.
Dan says, BP’s okay, 120 over 70 . . .
Tina says, Jeez, he’s comatose . . .
Okay, guys, let’s . . .
Suddenly, a young woman crashes through the doorway, followed immediately by Chris and two nurses. Petite but surprisingly strong, the woman pushes Dan out of her way and throws herself bodily on top of Mr. Atkins.
Oh, my God, the woman cries out. Oh, my God! What have you done to him? What is happening here? Peter! Peter, talk to me! Oh, baby, please talk to me! Peter! Oh, baby!
Pummeled, now pounced upon, Mr. Atkins doesn’t stir.
Mrs. Atkins . . . Tina begins.
His wife turns, looks up at me. Her blue eyes are bloodshot red, rimmed with tears.
Who are you? she asks, furious. What have you done to my husband? What have you people done?
The nurses go to her. They take her by her elbows, say something soothing, lift her off the bed. She protests, tries to fight them off. She’s a slim, slight woman but it takes all of the two nurses’ strength to get her up.
Leave me alone! she yells. What are you doing? He’s my husband! Peter! Peter! He’s my husband!
Standing now, unrestrained, she is seething, spewing spit as she speaks.
He was fine when I left him! He was . . .
Mrs. Atkins, I’m Dr. Reilly, your husband’s attending physician . . .
No, you’re not! You’re not our doctor! Our oncologist is . . .
I turn to Chris and Tina.
You guys take over here. Please come with me, Mrs. Atkins. These doctors have to take care of your husband now.
I motion to the nurses.
No, you don’t! Who are you? Call Dr. Mortola immediately! I want . . .
One of the nurses and I move her into the adjoining vestibule. As the door closes behind us, I hear Tina saying, Okay, guys, let’s move. Get me an amp of Narcan, Marcie, and let’s check his finger-stick. Dan, let’s get going on another IV . . .
Outside, in the vestibule, Mrs. Atkins is screaming at me through clenched teeth.
I . . . told . . . you! I . . . want . . . Mortola! And I want him now! I’ll sue you for all you’re worth, whoever you are . . .
Mrs. Atkins . . .
Hysterical now, she explodes.
They told us they would run more tests! They said there could be new treatments! There are always new treatments, I know that! He’s young. He’s in good shape. He eats right . . . or . . . he did . . .
Her voice slows now. Still furious, she’s also exhausted.
. . . he did before . . . he has no appetite now . . . I make him smoothies, you know, he likes them . . . he and the kids like them . . . he and the kids . . . oh, God, the kids! He’s . . . he’s too young . . . oh, God, he’s too young! Is he dying? Is that it? Is he dying?
Now she wails piteously, so distraught that her legs give way. She collapses into the nurse’s arms, her sobs muffled against the nurse’s gown.
Inside the room, I hear Chris say loudly: O2 sat is fine, his pupils aren’t pinpoint, let’s hold the Narcan for a minute, Marcie.
We sit Mrs. Atkins down in the lone chair in the vestibule. I crouch low so that my eyes are level with hers.
We don’t know yet, Mrs. Atkins. I saw him a couple of hours ago and he seemed okay, he was sleepy but not like this . . .
As I speak, somewhere in my brain an idea is aborning. I can’t see it yet and, whatever it is, it’s drowned out by all the ruckus. But it’s there, I can feel it there.
. . . he wasn’t like this, he was able to tell me about the pain in his liver and losing all the weight . . .
Oh, God, she says, he’s been suffering so . . . the pain and . . . and everything. He never complains . . . never . . . he didn’t even want to . . . come back here . . . he just wanted to stay home . . . with the kids . . . oh, God, the kids . . .
She begins to sob uncontrollably. The nurse holds her closer.
Inside the room, I hear Tina shout: Twenty-two? Did you say twenty-two? Oh, Jeez . . .
That’s it! That’s it! I push through the door back into the room.
Mr. Atkins looks the same. Tina is standing on his left, her hand holding his IV line. Dan is connecting a bag of fluid to the second IV he’s just placed in Mr. Atkins’s right arm. Marcie, the nurse, is holding a small box used to measure patients’ blood sugar at the bedside.
Chris hands Tina a big-barreled syringe the size of a beer can. Tina sticks the needle of the syringe into the IV line and pushes the entire contents of the barrel into Mr. Atkins’s vein.
Mrs. Atkins barges back into the room. What are you doing? she says. What are you doing? she screams again, looking around the room at each of us.
It’s a good question. Because, right now, we’re not doing anything. We’re all just standing there, looking at Mr. Atkins.
Waiting.
She pushes past Dan and Leah to her husband’s side.
What are you people doing?
She looks down at her husband.
Is he dead? Oh, God, no, is he dead? Oh, God . . .
Oh, God, is he gone? He can’t be gone . . .
She kneels by her husband’s side, cradles his head gently in her hands, kisses him on his cheeks and forehead and mouth. Then she rests her head on his chest, sobbing.
We all stand there, watching.
A minute passes. It feels like a lot longer.
Then Mr. Atkins opens his eyes. He blinks a few times. He looks down, sees his wife’s head on his chest. He puts his arms around her.
Startled, she jumps, thinking it’s one of us.
Leave me alone! she growls, starting to rage again. How dare you . . . !
Then she looks into her husband’s eyes. They’re the same color as hers.
She gasps.
Hiya, hon, Mr. Atkins says softly, sleepily.
She yelps, then smothers him in kisses again.
Oh, my God! Peter . . . I thought you were . . . Oh, my God . . . Peter . . .
I look around the room.
Dan and Leah are grinning. Tina is frowning, mulling over something in her head. Chris confers with Marcie, the senior nurse.
Marcie asks the other nurse to get a new IV solution, one with concentrated glucose. She asks Mrs. Atkins, who is hugging and kissing her husband, to please let her have his hand so she can draw more blood.
Now what? she says angrily, turning to me. Can’t you all just leave him alone? Haven’t you done enough already?
Before I can answer, Tina steps forward.
Mrs. Atkins, she begins, let me . . .
I don’t want to hear it! Just leave us alone . . .
Now Mr. Atkins sees Tina. Weakly, he waves at her.
Dr. Johansen, he says softly, his voice sleepy and warm. Hi, Dr. Johansen. Honey, this is Dr. Johansen, she’s been very good to me . . .
Tina musters a smile.
Hi, Mr. Atkins, she says. Good morning, ma’am.
Undeterred, Tina introduces the team. When she comes to me, I step forward and ask Mr. Atkins if he remembers meeting me a few hours ago.
He looks at me doubtfully. I’m not sure, he says.
I glance at Tina. She looks puzzled, says nothing.
I tell Mr. Atkins that his blood sugar was dangerously low, so low that he was unconscious until Dr. Johansen and her team treated it and made him better. I tell him the nurse needs to stick his finger again to check his blood sugar.
Sure, sure, he says softly, offering his hand. He turns to Tina.
Thanks again, Dr. Johansen. You seem to be my guardian angel.
Tina’s eyes fill.
Mrs. Atkins watches and listens but remains silent. She gets up from the bed to let Marcie draw blood. The second nurse re-enters the room with the new IV solution.
I tell Mr. Atkins that we’ll all step out for a moment while the nurses do their work.
Sure, sure, he says. Thanks, doc . . . thank you all . . .
I motion to Mrs. Atkins to follow us out of the room. She looks at me, then at her husband.
I’ll be right back, Peter, she says, more to me than to him.
Outside, in the vestibule, she isn’t backing down.
What’s going on here? she says to me. Why did his blood sugar get so low? He’s never had that problem before. What have you done to him?
At this point, part of me wants to tell her to go to hell. But I’ve been here before. I don’t know her, but I know where she’s coming from, and I know it’s not an easy place to be. I take a deep breath.
Mrs. Atkins, your husband’s liver isn’t functioning normally because of the cancer. On top of that, he hasn’t been able to eat much lately. The combination of his sick liver and not eating is probably what made his blood sugar drop so low. We’ll make sure it doesn’t happen again. We want to be sure he’s comfortable.
She considers this.
Well, he can’t stay on an IV forever! she says, angry again. How do we get him to eat? Can’t you give him something to stimulate his appetite? He can’t go on like this!
No, he can’t, I say.
She looks hard at me. Her bloodshot eyes well up again.
What does that mean? she says, fighting through the tears.
Mrs. Atkins, he’s not eating—he has no appetite—because his liver is full of cancer.
She wipes her eyes and fires back at me.
They already told us the cancer has spread to the liver! We know that! That’s why he’s here! To treat the cancer!
We’ll speak with the oncologists this morning, Mrs. Atkins. I’m sure they’ll be seeing you and your husband soon. But I don’t know if they’ll have other treatments to offer him. I hope they do. But once the liver gets this sick, the treatment options are pretty limited . . .
Tina is nodding.
Mrs. Atkins looks around at all of us, each in turn. Leah’s eyes are cast down to the floor. Dan can’t look at her either. Chris hurries back into the room to check with the nurses. Tina and I exchange glances.
Mrs. Atkins, we need to be thinking about . . .
What? she says, combustible again. What? A liver transplant? You want to do a liver transplant? Fine! Whatever! Let’s . . . get on with it . . . whatever it takes, she says, whatever he needs . . .
No, ma’am, he can’t have a liver transplant. If the cancer were only in his liver and nowhere else in his body, he might be a candidate for a new liver. But, as you know, his cancer is in his pancreas and other organs, too. A liver transplant can’t help him.
She steps close now and looks up at me, her eyes a foot from mine.
You’re saying . . . You’re saying . . .
He’s very sick, Mrs. Atkins.
You’re saying . . . he’s . . .
We need to . . .
. . . dying, she says, matter-of-factly, her eyes dry now. She puts her hands on her hips defiantly.
You’re saying he’s dying, she says again.
Let’s see how he does today, ma’am, and let’s see what the oncologists think. They know more about this than I do.
Yes, she says coldly, I’m sure they do. I’m sure they do. What I want . . .
Her voice trails off. She begins to cry quietly. Tina comes to her, puts her arm around her.
What I want, she repeats, . . . What I want . . .
Mrs. Atkins, I know this has been very hard for you and your family . . .
Sobbing audibly now, she puts her head on Tina’s shoulder. Tina closes her own eyes. They both look exhausted.
. . . we will do everything we can to help, Mrs. Atkins. But now we need to focus on what he wants, what your husband wants . . .
Slowly, she opens her eyes, lifts her head, turns to me.
Yes, she says, sniffling. You’re right, we need to . . . we need . . .
We go back into the room. Mr. Atkins’s knees are flexed. He’s holding his right side. His wife goes to him, kneels by his bed, takes his hand. I grab a chair, sit close to them, our eyes level.
I point to his hand holding his side.
Are you having pain now, Mr. Atkins?
Yes.
We can help with that.
He closes his eyes. That would be good, he says.
I tell him the oncologists will see him this morning. I tell him we’ll leave now for an hour or two to see our other patients but we can be here in a minute if he needs us. I tell him I’ll be back after he has spoken with the oncologists so that we can discuss together what to do next.
If you can make this pain better, doc, I’d be grateful. But I don’t want you to knock me out, okay? I want to be with Sarah . . . see my kids . . .
He turns to his wife. She takes a deep breath, then holds her hand against his cheek.
Whatever you say, sweetie . . . she says, her eyes wet but smiling. Whatever you say . . .
I get up to leave.
There are things to talk about, Mr. Atkins.
He looks me straight in the eye. Yes, he says.
Who is your regular doctor, sir? We can call him. Maybe you and Mrs. Atkins would like to discuss some of these things with him?
The question puzzles him. He looks at his wife.
You mean like a family doctor? she asks.
Yes.
There’s no one like that, she says dismissively. Peter’s doctors are all cancer specialists. Nothing but the best.
Okay. But, then, do you know any of the oncologists well? One doctor who knows you well? You mentioned Dr. Mortola . . .
We’ve met him only once, she says. He arranged the transport here last night. We’ve seen so many others. Here . . . Sloan Kettering . . . Boston . . . But there isn’t any . . . one . . . regular one . . .
Okay. I understand. We’ll talk more when I come back.
Mr. Atkins nods. Thanks, doc, he says.
His wife regards me silently as I leave.
• • •
How is this possible? How can it be that an intelligent, reasonable man with considerable financial resources and a loving family whose cancer has failed treatment at not one, but several, of the world’s best hospitals finds himself in this situation? Near death, yet not knowing it? Assuming, despite multiple failures, that “there are always new treatments”? Unaware that heroic interventions like a liver transplant are not even conceivable in his case, much less feasible? And, throughout his long, wracking ordeal, not having a single doctor who knows him well, who is watching out for his best interests, who is talking to him about how he feels, what he needs, what he wants to do? How can it be—even in the best U.S. hospitals, the crown jewels of the “best health care system” in the world—that such an utter lack of communication is possible?
It happens every day. In fact, increasingly, it’s predictable.
Part of the communication problem is doctors like me. “Hospitalists” who do the kind of clinical work I do now—we take care of patients only when they are in the hospital—today number in the tens of thousands. Most of us do the best we can in a difficult job. But what makes the job hard is not just the long hours, the frequent crises, the attendant risks of burnout or cynicism. In addition, what makes it hard is knowing that, from patients’ perspective, my involvement in their care is a double-edged sword. I’m good at what I do, and most of the time, they’re lucky to have me. But I’m not their doctor—the one who knew them before they came into the hospital, the one who will resume their care after they leave the hospital. And, when you’re really sick, that’s what you need: your doctor.
For older doctors like me, who remember the way it used to be, this is irritating not because the good old days were better—in many ways, they weren’t—but because this drastic change in the way medicine is practiced has been precipitated by the medical profession’s (and U.S. society’s) preoccupation with money. In many parts of the United States, your “real” doctor—if you’re lucky enough to have one—doesn’t take care of you in the hospital because this has become a money-losing proposition (for both your doctor and the hospital). In the new economics of U.S. medical care, hospitalists are more cost-effective. In addition, fewer and fewer people have a “real” doctor anyway—one who takes care of you whenever and wherever you need it, through thick and thin, a doctor who knows you as a person. Why? Largely for the same reason: This kind of doctoring doesn’t pay well. As a result, in many U.S. medical schools and teaching hospitals, physicians-in-training (most of whom amass enormous educational debts) are actively discouraged from, even ridiculed for, pursuing careers as primary care doctors.
The other part of the communication problem is you. All of us, really. Put yourself in Mr. Atkins’s place. Wouldn’t you do what he has done? Suppose you have everything to live for—and incurable cancer. Wouldn’t you seek out the top specialists in the best hospitals? Take the treatments they recommend? Fight to get better, beat the odds, stay alive—for your own sake and your family’s? I know I would. But if, after fighting the good fight, the writing is on the wall—if your cancer is galloping and you look like a concentration camp victim and you can’t eat or get out of bed—what do you do? Voluminous research has shown that different people, when confronted with this existential crisis, make different choices. Ideally, then, doctors try to talk to their patients, explore their feelings and hopes, help them make the best decision for themselves and their family. But there’s the rub: Not only do many doctors not do this, many patients don’t let them.
Almost twenty years ago, researchers published results of the SUPPORT trial (The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments), a landmark four-year study of more than nine thousand patients hospitalized for life-threatening illnesses at five top U.S. teaching hospitals. SUPPORT documented frequent disturbing failures in doctor-patient communication in hospital. In many cases, patients’ preferences were not solicited by their doctors, their wishes not followed, their pain and suffering not relieved. Worse, despite $28 million in funding from the Robert Wood Johnson Foundation, intensive efforts to redress these shortcomings failed in every measurable way.
SUPPORT found that many people—doctors and patients alike—don’t want to talk about failing treatments, dire prognoses, losing hope, dying. To try to overcome this reluctance, SUPPORT study staff met with each patient (and, in most cases, family members) an average of six times during their hospital stay. Specially trained nurses discussed the patient’s prognosis, pain level, and likely outcome of resuscitation efforts (such as CPR). Yet, despite these substantial efforts to “support” patients, answer their questions, and encourage further discussions with their doctors, fewer than half of all SUPPORT patients (40 percent) actually then talked about these issues with their doctors. An equal proportion of SUPPORT patients (40 percent) not only did not discuss these issues, they actively refused to discuss them, despite the obvious severity of their illnesses. (One-half of all SUPPORT patients were dead six months later.) The remaining 20 percent of SUPPORT patients did not discuss these issues with their doctors but said they wanted to.
In one sense, results of the SUPPORT study are not surprising. William Saroyan’s famous line resonates with most people: “Everybody has to die but I have always believed an exception would be made in my case.” This is why SUPPORT investigator Joanne Lynn sometimes calls human beings “the temporarily immortal”; most of us so blithely take life for granted that we deny the inevitability of its end until it punches us in the face. In addition, some very sick patients don’t want to talk about their prognosis or preferences, choosing instead to focus all of their physical energy on getting better and all of their mental energy on optimism and hope. (In fact, for a long time most doctors believed that such talk upset patients—and maybe even made them sicker. Before the SUPPORT study, doctors rarely spoke to any sick patients in hospital about dying.)
For these reasons, it is naïve to think that doctors can engage hospitalized patients in these uncomfortable discussions. But it is even more naïve to think that any doctor will do. If you were severely ill in hospital, would you want to discuss your most personal hopes and fears—literally, your life and death—with a doctor you just met? This aspect of the SUPPORT study received relatively little attention: Who were all those doctors with whom so many SUPPORT patients (40 percent) refused to talk? Were they doctors who knew the patients well? Did they have a personal relationship with these patients?
We don’t know. SUPPORT researchers reported that they had relied on “the senior most available physician acknowledging responsibility for the patient’s medical decisions” in hospital. Right now in the United States, that tends to be doctors like me. But the Atkinses, for example, don’t know me from Adam and I don’t know them. Today, all around the United States, doctors who’ve just met sick and dying patients in the hospital are struggling with this same problem. We’re caught in the middle of an uncoordinated, depersonalized “system” of care that values subspecialist doctors (many of whom don’t take responsibility for the “whole” patient over time) and cost-efficient hospitals (most of which eschew any responsibility for the patient’s pre- or posthospital care). The patient is often lost in the shuffle. Despite the many important lessons learned from the SUPPORT study long ago, the situation in many hospitals today isn’t getting much better.
• • •
At the nursing station on 14 South, we confer again with Marcie and try to reconstruct what happened to Mr. Atkins and why. She came on duty at 7:00 a.m. In the change-of-shift meeting, the night nurses told Marcie that Mr. Atkins was sleeping comfortably. She had no reason to think otherwise. We don’t spend time now talking about how to make sure this doesn’t happen again with another patient. There’s a formal hospital process to get to the bottom of such things, do better next time. For now, we just talk about what we need to do for Mr. Atkins.
While we talk, Tina enters new orders into the computer. She looks discouraged.
You okay, Tina?
Mmm . . . I’m . . . I’m feeling kind of bad about what happened in there.
Why? You did great in there.
I should have thought of this, Tina says. I should have anticipated it. I could have prevented it.
He was okay when you saw him, Tina. His blood sugar was normal last night. You’re not expected to be clairvoyant.
Yeah, Chris murmurs. Dan is looking over her shoulder at the computer screen.
Hey, look, he says. Oncology has seen him already. They’ve entered a note.
Huh, Tina says, clicking her mouse.
It’s just a few lines, typed by Dr. Mortola, the senior oncologist, at 7:10 this morning. Tina reads it to us: “Fifty-three-year-old man with widely metastatic neuroendocrine pancreatic cancer refractory to all treatment admitted for reevaluation. Therapeutic options are limited. Patient currently unresponsive. Suspect brain metastases. Please obtain STAT MRI of the brain. Will return after MRI.”
Chris whistles.
They all look at me.
You did good in there, guys.
Tina isn’t satisfied with that.
Mortola didn’t tell the nurses? she says.
I look at the time of the oncologist’s note.
Nurses’ change-of-shift, I say.
Oh, Jeez, Tina says.
But now I’m remembering the vague feeling I had about Mr. Atkins when he was unconscious a few minutes ago and I wasn’t sure why until Tina and the others figured it out. When I saw him around five this morning, he had been pretty drowsy. Like the nurses, I had assumed he was just sleepy.
I tell Tina and the others that Dr. Mortola probably wasn’t the only one who missed it. I tell them I’d bet anything Mr. Atkins’s blood sugar was dangerously low when I saw him, too.
My team doesn’t say anything, but they look uncomfortable. They’re not accustomed to their attending physician admitting to serious mistakes. In fact, I’m pretty sure they don’t want to hear it at all.
• • •
People get hurt in hospitals. This has been well known ever since a nurse named Florence Nightingale blew the whistle 150 years ago, and the problem hasn’t gone away. In one year recently, 98,609 hospitalized patients in New York State alone suffered a serious injury (which prolonged their hospital stay or resulted in disability). One in seven of these hospital-acquired injuries was fatal. Extrapolated nationally, this number of iatrogenic (health care–related) deaths was the equivalent of three fatal jumbo-jet crashes every two days in the United States throughout the year. About one-third of these health care “crashes” are unavoidable. (Bad things happen to sick or dying people because they’re sick or dying.) But the remaining two-thirds of these serious errors, caused by me and other people who work in hospitals, are preventable.
Shame on us? Yes and no.
The more we learn about medical error, the more daunting it seems. In one medical intensive care unit, for example, careful research documented an average of 1.7 errors per day per patient, of which 29 percent had the potential for serious or fatal injury. This sounds terrible until we realize that patients in this intensive care unit required, on average, 178 important actions daily, 99 percent of which were done timely and well. However, as Lucien Leape pointed out in his classic analysis of medical error, 99 percent proficiency in health care—even in medical intensive care units where the patients are complex, the work stressful, and crises unpredictable—isn’t nearly good enough. Even if health care workers were ten times better than this—99.9 percent proficiency, an error rate of only one in one thousand—Leape noted that this would be the equivalent of two unsafe landings every day at Chicago’s giant O’Hare Airport, or sixteen thousand pieces of mail lost every hour by the U.S. Post Office.
Clearly, then, other industries can teach the health care industry how to do better and there is good reason to be optimistic about this. Anesthesiologists, for example, have reduced deaths caused by anesthesia from 1 in 10,000 patients (0.01 percent) two decades ago to fewer than 1 in 200,000 patients (0.0005 percent) today. We have a long way to go before we reduce error this much in other areas of medical care, but we’re learning.
Although individuals like me perform the actions that “make” the errors, the cause of most errors is more complicated than one individual’s screwup. In effect, less-than-fail-proof systems fail to protect patients adequately from all-too-human errors. And, as anesthesiologists have done, these systems can be improved (in many cases, through computerization), “error-proofed” to reduce the impact of fallible people’s (inevitable) missteps.
Traditionally, doctors have been “bred” to be perfect. Mistakes are considered unacceptable. Infallibility is the goal. This pursuit of perfection is admirable in one sense: It is in patients’ best interests if their doctors strive relentlessly to get it right. But, in reality, this ambition is absurd: No one is perfect. And, in practice, setting the bar this high is downright harmful, because “perfect” doctors don’t want to see their mistakes. As a result, we often don’t see them or, when we do, we reconstruct the facts to explain them away. To paraphrase a famous quotation about history, doctors who deny their mistakes are doomed to repeat them.
People in denial often experience extreme emotional distress when the object of their denial reveals itself (to themselves and others) to be . . . undeniable. When this happens to doctors—and every one of us has made mistakes that hurt patients—many of us freak out. We feel ashamed, guilty, humiliated. We think everyone will think now that we’re not good doctors (because good doctors don’t make mistakes). We agonize, replay the event repeatedly in our mind, relive the horror of it. It becomes a kind of post-traumatic stress disorder for many of us: We become anxious and fearful, hesitant and defensive—not where you want your head to be if you work on the front lines of medical care. Professional perfectionism not only doesn’t make a better system of care, it doesn’t make better doctors, either.
Why, then, is Tina beating herself up about Mr. Atkins? If the medical profession has learned these important lessons—that all doctors are fallible, like everyone else; that most errors in medicine are systems flaws, not character flaws—then why is Tina feeling guilty, or thinking she should feel guilty? Because, as a matter of fact, most doctors have not accepted these new ways of thinking about error. Young doctors like Tina are taught and mentored by an older generation of doctors like me. And many of us dinosaurs, still in denial, continue to demand perfection—of ourselves and others. Cultures die hard.
But Tina’s reaction is more complicated than simply feeling guilty. Tina knows that someone must take responsibility for the patient’s welfare. Systems can’t do this; only people can. And with personal responsibility comes personal accountability. Doctors take the credit when things go right. (That’s what keeps most of us coming to work every day.) But we must also step up and take the blame when things go wrong. That’s what Tina is doing, and I admire her for it.
Yet taking responsibility isn’t enough. We also need to learn from what happened to Mr. Atkins, because it will happen again—to another patient—and maybe, by learning from this experience, we will do better the next time. It has long been a truism in medicine that doctors learn most from their mistakes (although most doctors don’t tell this to their patients). But the essential first step in this process is to want to know what really happened, regardless of how it makes us feel.
Mr. Atkins suffered a potentially catastrophic adverse event. (Severe hypoglycemia, if unrecognized and untreated, causes permanent brain damage or death.) This event occurred after, not before, Mr. Atkins came to the hospital. Was it caused by medical error? Did we, the doctors and nurses entrusted with Mr. Atkins’s care, commit a terrible mistake? The easy answer is No. Mr. Atkins’s hypoglycemia was caused by his disease (liver cancer and resulting anorexia), not an error by his caregivers. As in one-third of all serious patient injuries in hospitals, medical error did not cause Mr. Atkins’s problem.
But regardless of who or what caused his blood sugar to drop to dangerous levels, the relevant question is how his caregivers could have protected Mr. Atkins from the damaging effects of hypoglycemia. Could we have anticipated its occurrence—and prevented it? Could we have recognized it earlier—and treated it—before it hurt him? If the answer to either of these questions is Yes, then we must take responsibility for errors of omission—things we didn’t do but should have done—even if we are not culpable of errors of commission in this particular case.
Yes, we could have anticipated the problem and prevented it from happening. And, failing this, we could have (and should have) recognized the problem earlier and minimized the harm it caused. We didn’t do what we could have done to keep Mr. Atkins safe. Importantly, in this case “we” is not some disembodied “system” of care. We is all of us who cared for Mr. Atkins during his first twelve hours in the hospital. Every one of us committed errors.
In retrospect, Tina wishes that she had done one simple thing differently and ordered a sugar water (glucose) solution instead of the standard saltwater (saline) solution for Mr. Atkins’s intravenous feeding. Then his blood sugar would not have fallen to such a low level. The nurse who carried out Tina’s order last night also missed an opportunity to avert disaster by simply asking Tina whether, in Mr. Atkins’s case, glucose would be a better choice of IV fluid. In hindsight, both of these actions seem obvious: Mr. Atkins was very sick, had lost a lot of weight, and hadn’t eaten solid food in days. But that’s the problem with “Monday-morning quarterbacking.” Knowing the outcome of a past event influences one’s perception of it; this “hindsight bias” distorts one’s appraisal of what happened and why. If we hope to avert similar disasters in future patients, we may need to include a “stop order” (in the computerized order entry system) in the routine process of ordering IV solutions for patients. This would require the physician to consciously choose which of several intravenous solutions is best for this particular patient before the computer will accept the order. As with smart algorithms for diagnosing heart attacks, a smart system can protect patients from one doctor’s—or one nurse’s, or one team’s—human error.
In the current vernacular of patient safety efforts, Tina’s (and the nurse’s) error is called a “slip” (as opposed to a “mistake”). Slips are glitches in “automatic” activities—routines performed largely without thinking about them—where unintended deviation from the routine (or, in this case, failure to deviate from the routine) causes an adverse event. Slips tend to happen when we don’t pay sufficient attention to the “routine” task at hand, usually due to fatigue, stress, or distraction. Tina, for example, had been up all night taking care of sick, complex patients like Mr. Warner. She’d been bombarded with pages and phone calls and other distracting interruptions. Under these conditions, other doctors—including me—might have made more than just one slip. Better systems are the best way to protect against slips.
But the errors made this morning by myself and Dr. Mortola, the oncologist, were “mistakes,” not slips. Mistakes are errors in conscious thinking due to lack of knowledge or misapplied knowledge or misinterpretation of the problem. This type of medical error is not so easy to fix with better systems. It’s the kind that doctors, ever susceptible to denial, tend to “explain away.” In my case, I misinterpreted the problem I encountered when I first met Mr. Atkins: He was very drowsy. I assumed that he was just sleepy, not a “problem” at all. This was a perfectly reasonable assumption at five o’clock in the morning, especially after Mr. Atkins had had an exhausting day and night (and several doses of strong pain medicine). In similar situations, my assumption would be correct 99.9 percent of the time. But that’s not good enough. I was wrong: Mr. Atkins was drowsy because he had begun his gradual slide into hypoglycemic coma. Why was I wrong? Not, as I would prefer to think, because I was unlucky, the victim of a rare, unpredictable event (spontaneous hypoglycemia) masquerading as an unremarkable nonevent (normal sleepiness). No, I was wrong because I assumed that the most obvious explanation was the correct explanation. I was lazy. Not physically lazy. Mentally lazy. I “closed” the problem prematurely. I didn’t ask myself: What else could this be?
Dr. Mortola was lazy, too. When he saw the patient an hour or two after I did, Mr. Atkins wasn’t just drowsy, he was unresponsive. Comatose. Dr. Mortola assumed that Mr. Atkins’s uncontrolled, widely disseminated cancer (which, he knew, would kill Mr. Atkins soon) had spread to his brain, and he recommended further testing (a brain MRI) to confirm this assumption. But, like me, he didn’t ask: What else could this be? And, for the same reasons, he didn’t make the effort to alert either the nurses (cocooned, at the time, in their change-of-shift hand-off huddle) or the residents (on rounds, seeing other sick patients, on other floors). One can argue that Dr. Mortola’s mistake was more egregious than mine. (Coma is always a medical emergency, never to be confused with mere sleepiness.) Naturally, I like this idea because it makes my own mistake seem more forgivable by comparison. But we both made mistakes that could have killed Mr. Atkins. Indeed, Dr. Mortola couldn’t have made his mistake if I hadn’t made mine a couple of hours earlier.
Mistakes often reflect well-known “cognitive dispositions” and biases. In Mr. Atkins’s case, “premature closure” was the main problem. But many other pitfalls like it—including attribution bias, availability bias, visceral bias, and “satisficing”—predispose doctors to make medical errors every day, wherever medicine is practiced. Knowing more about these potential sources of error can help doctors reduce mistakes. But even doctors who know a lot about these cognitive biases—as I did when I met Mr. Atkins—don’t always recognize them and avoid their hazardous effects.
We’re human. We make mistakes.
• • •
It’s 8:15. I ask Leah to page Dr. Mortola to let him know what’s going on. The rest of us hustle toward the elevators to go to the ED.
As we walk, Tina and I are side by side, the others trailing behind.
I’d like to be there when you talk to the Atkinses later, she says.
In saying so, Tina is asking permission to stay longer in the hospital today, beyond the legal twenty-seven-straight-hours maximum work shift for residents. Regulations allow exceptions to this rule but only in special circumstances. Talking to a patient about dying isn’t one of them. Tina knows this.
Tina doesn’t push it. She’s dog-tired. She’s also five months pregnant. I’d like to put my arm around her shoulder, give her a hug, and tell her I’m proud of her, as if I were talking to my daughter, Caitlin, a young professional who’s just had a baby of her own. But I can’t do that. I’m Tina’s teacher, not her father.
When you’re back on Monday, Tina, I’ll give you the blow by blow.
Tina grimaces.
Blow by blow? Jeez! Let’s hope it doesn’t come to that.