Wednesday, October 31, 2018

Bigotry, Medicine, and Pittsburgh

“You’re one of them wealthy people, from that wealthy family — what are they called? The Rothbergs?”

“You mean the Rothschilds?” I asked.

“Yeah they’re the ones. You’re related to them?”

“No, sir. My last name is Rothstein — different family but same religion.”

Most of the time I don’t hear about race or religion in medicine but often enough I do have interactions with patients about my religion that make me wince. In another instance I saw a patient after a large surgery. I introduced myself and asked him how he was doing. “I’m okay,” he responded. Then, after a pregnant pause, he looked at my ID badge, then my face, and asked, “You’re Jewish, right?”

“Yes, I am,” I responded.

“I have great respect for the Jewish people. You know Jesus was Jewish, right?”

“Yes, I did know that.”

“But you don’t believe Jesus was the Messiah, right? You know, Jesus is our Lord and Savior and he performed incredible miracles while he was alive. Did you know that?”

“Yes, I’ve read some of the New Testament and I’ve spoken with Christians about their beliefs.”

“Well, then, why not believe in Jesus? He built on Judaism. His thinking revolutionized religion. It is the latest prophecy, the latest and truest Word of God. Would you be interested in seeking out Jesus?”

“I appreciate the offer but I’m comfortable with my own religion.”

“Well, you should convert. It’s the only way to seek the real Truth. Jesus is the Messiah and if you don’t convert you won’t be going to heaven.”

“Thanks, but I’m okay. Now, how’s your surgical site doing? Are you still in any pain?”

Sometimes it even goes beyond this. There was a patient I saw regularly in the hospital who would intermittently get aggressive, annoyed, or anxious. The nurses called me to talk him down. One evening he was particularly upset about being in the hospital. I entered his room as the nurse was leaving. “Tell that n***er to leave me alone!” he shouted.

“Excuse me, that is inappropriate. We do not use that kind of language.”

He looked at my name badge and shouted, “Well guess what? I’m Hitler, so I think you should leave.”

This is not to mention a co-resident who was told by a patient, “You’re such a Jew.” Or another patient who told a Jewish co-resident, “All you want from me is a pound of flesh” — a reference to The Merchant of Venice, where Shylock, a Jew, lends money to a Christian and demands a pound of his flesh as security.

These experiences and others I’ve had run the range from threats of violence to humorous to uncomfortable, but there is a theme behind them. Unfortunately, my experiences are not unique. All physicians take care of racist or bigoted patients. In January 2018, the Wall Street Journal published a piece on racist patients, quoting doctors discussing their experiences. In a 2017 blog post by the American Academy of Family Physicians, multiple physicians retold their stories of interacting with bigoted patients. Dr. Lachelle Dawn Weeks, a resident at Brigham and Women’s Hospital in Boston, wrote a short 2017 essay for STAT News chronicling her experience with racism. She concludes that

in an ideal world, hospitals would categorically disavow cultural and religious discrimination. Hospital administrators would publicly refuse to cater to culturally biased demands and express a lack of tolerance for derogatory comments towards physicians and staff as a part of patient non-discrimination policies.

Dr. Dorothy Novick, a pediatrician, wrote in a 2017 Washington Post op-ed that “When I treat racist patients but fail to adequately address the effect of their words and actions on my colleagues, I not only avoid teachable moments; I condone hate.” Dr. Farah Khan wrote in 2015 in The Daily Beast, denouncing bigotry she’s faced in the hospital. She asserts, “We should be taking strides within the medical community to break down unfair judgments and racist ideals.” Moreover, “Of all the things that I had imagined brown could do for me, I never really expected it to make me feel out of place both inside and outside of the hospital.”

These interactions do make a physician’s job difficult. Patients refuse treatment from a particular physician or verbally abuse him or her on the basis of race or religion. A physician cannot offer an argument against this to assuage the patient. And it is difficult to hear or experience these insults and epithets after years of training to help others.

What, then, ought to be done? Many of the physicians I cited above offer condemnation and resolve not to tolerate racist behavior. But in practicality these are non-specific, anodyne proposals. Of course hospitals, and we, should condemn such behaviors. But what does that mean in terms of our conduct in the hospital?

In an earlier post, I’ve written about the more general difficulties physicians regularly experience because of frustrated patients, who may swear at, insult, or even slap us, and since writing those words I’ve been punched or swung at by patients multiple times. I’ve been accused of not caring about my patients, of being a bad physician. This is part of the difficulty of the profession. Physicians and nurses bear the brunt of patients’ frustrations or hatred. And while we can tell patients that their language is inappropriate, part of being a physician is offering our services when they are ill, despite how we might feel about them or they might feel about us.

This is nowhere more true than during war. As I’ve previously written about the role of the Hippocratic Oath in wartime, “The physician ... is responsible only for the good of the patient no matter what uniform that patient may wear. The Oath makes no exception for wartime or for the treatment of an enemy.”

Tree of Life synagogue in Pittsburgh / CTO HENRY (Creative Commons)
One of the most recent and heartening examples of such principled medical practice was after the attack in Pittsburgh this past week, where an anti-Semitic gunman killed 11 Jews in a synagogue, screaming “All Jews must die.” After being injured in a gunfight with police officers, the gunman arrived at a hospital where Jewish doctors and nurses took care of him.

Yes, there are bigots and racists who not only insult those who are different but murder them. However, in the face of such hatred we must continue to offer the patient treatment. To treat patients in their time of acute need despite what they’ve done or said is part of our professional responsibility.

This may strike some as a deeply unsatisfying conclusion. Where is justice? Where is the punishment for these people? Why shouldn’t they face consequences for their hatred? But we see these patients for a brief moment in their lives. Distributing punishment is not our purpose, nor will a refusal to treat them change the way they feel or act. In fact, a physician is far more likely to change such behavior and to make an impact by treating the patient. After that, we trust our legal system to distribute punishment, and hope the prejudiced patients figure the rest out themselves.

Wednesday, September 12, 2018

Is More Medical Testing Better?

“I think this patient needs a CT scan of her chest,” the consulting physician said to me over the phone. “Her lungs sound bad, and given her history, we need to make sure she isn’t developing pneumonia.”

The patient, though only thirty-five, had been through a lot during her hospitalization. She came in a week prior with some shortness of breath, an abnormally high heart rate (tachycardia) and chest pain. But her heart checked out just fine. An EKG was normal and her troponin, a protein that spills into the blood with damage to heart, was undetectable. Because of her tachycardia and chest pain we tested her for a pulmonary embolus, or clot in the lungs, with a CT scan. It was positive. The potentially deadly clot blocks off blood flow coming from the right side of the heart into the lungs causing heart strain and disrupting oxygenation of blood and the functioning of the heart.

We admitted the patient to the intensive care unit where she received IV medication to thin her blood. She recovered but continued to experience residual chest pain that would clear in the months ahead. As we prepared to discharge the patient, the consulting physician, a cardiologist, told us he wanted her to get another CT scan of her chest. She had not had a scan since the initial stages of her workup. What if she developed pneumonia in the interim? Her white blood cell count, often a crude marker of infection, was not elevated. She did not have fevers. When asked, she felt well enough to go home and wanted to leave. Then again, being in the hospital made her susceptible to infection. Moreover, on her physical exam, we heard crackles in her lungs – this sometimes indicates an intrapulmonary pathology. The cardiologist’s concern gave us pause and we ordered the imaging study.
Doctors often feel uncomfortable with areas outside of our expertise. Consequently, we call other specialists to see the patient and give us advice. Moreover, patients sometimes ask to see a specialist in the hospital: “Can you call the neurologist to come see me?” or “We’d like you to call a cardiologist to see our father while he’s here.” Because consultants share a different knowledge base than the team primarily caring for the patient they may ask for more tests to rule out other serious pathologies that the primary team neglected to consider.

The patient’s repeat CT scan merely demonstrated small collapsed alveoli. These terminal branches of the lungs often collapse when we draw shallow breaths or lie flat for a long time, a typical finding in many hospitalized patients. Given the benign nature of this finding, we discharged the patient. Yet she had received an extraneous dose of radiation and her hospital bill would be hundreds of dollars more. Did she absolutely need this? This common story raises other questions, too. Do patients do better with more specialists seeing them? Do patients do better with more testing?

In a 2012 post for the New York Times Well blog, Tara Parker-Pope pointed out that “overtreatment – too many scans, too many blood tests, too many procedures – is costing the nation’s healthcare system at least $210 billion a year, according to the Institute of Medicine.” And the stories she tells about astronomical hospital bills due to overtesting are disturbing.

In a 2015 article in the Journal of the American Medical Association, a group of researchers found mortality for high-risk heart failure and cardiac arrest among patients was lower in teaching hospitals during national cardiology meetings compared to the rest of the year – meaning that the absence of a large number of cardiologists, who were attending meetings, was correlated with lower mortality for these heart conditions in the hospital. In an editorial in the same issue, Dr. Rita Redberg makes a disquieting suggestion: “How should we interpret these findings? One possibility is that more interventions in high-risk patients with heart failure and cardiac arrest leads to higher mortality.” Is there too much being done, especially by experienced physicians?

Dr. Ezekiel Emanuel, an oncologist and bioethicist, elaborated on these questions in a New York Times op-ed in 2015:

We – both physicians and patients – usually think more treatment means better treatment. We often forget that every test and treatment can go wrong, produce side effects or lead to additional interventions that themselves can go wrong. We have learned this lesson with treatments like antibiotics for simple medical problems from sore throats to ear infections. Despite often repeating the mantra “First, do no harm,” doctors have difficulty with doing less – even nothing. We find it hard to refrain from trying another drug, blood test, imaging study or surgery.

When specialists like neurologists or cardiologists see a patient, they approach the bedside from a unique perspective. The pathologies they know and think about are very different from what family medicine or internal medicine doctors thinks of when they see a patient. Specialists, who often act as consultants, consider the diseases they are most worried about within their field. They’ve been asked to see the patient to recommend workup for a disease potentially related to their area of expertise. Their view, in other words, is necessarily myopic – if you give a carpenter a hammer, surely the carpenter will find a nail. This does not always happen, but by nature there is a bias when a consultant approaches a patient – and that bias is toward ordering another test, toward doing something. Part of the art of medicine, especially as a specialist or consultant, is figuring out when the patient needs something and when the best approach is to do nothing at all. Our patient at the beginning of the story did not really need a repeat CT scan. To be sure, the cardiologist didn’t recommend it simply to radiate the patient or increase the hospital bill. But none of us wanted to miss something.

A conservative method of practice can come with experience, but as evident from the JAMA study referenced above, that’s not necessarily the whole story. Some of this, I think, requires thinking regularly about how well the patient in front of the doctor is doing and how a test will change the course of the patient’s treatment. “Will this change our management?” is a question our attending physicians always ask us before we order a test. And it is a question all doctors must ask themselves.

Thursday, April 26, 2018

Reflections on Treating the Poor

It is altogether curious your first contact with poverty. You have thought so much about poverty — it is the thing you have feared all your life, the thing you knew would happen sooner or later; and it is all so utterly and prosaically different. You thought it would be quite simple; it is extraordinarily complicated. You thought it would be terrible; it is merely squalid and boring. It is the peculiar lowness of poverty that you discover first; the shifts that it puts you to, the complicated meanness, the crust-wiping.

- George Orwell, Down and Out in Paris and London

George Orwell’s 1933 memoir, Down and Out in Paris and London, relates the clear-eyed experience of being homeless and penniless. The novel’s protagonist lives in Paris giving English lessons and eventually experiences a stroke of bad fortune and loses his job; money slowly but surely disappears. He is overcome with “a feeling of relief, almost of pleasure, at knowing yourself at last genuinely down and out.”

Imagine, Orwell asks of us, what this bad fortune means. You cannot send letters because stamps are too expensive. At the baker, an ordered pound of bread weighs in slightly more and thus costs slightly more — and you cannot pay for it. You avoid “a prosperous friend” on the street so he won’t see that you’re “hard up.” And you’re hungry. Wherever you walk there are inescapable reminders of this: bakeries, restaurants, coffee shops. “Hunger,” Orwell writes, “reduces one to an utterly spineless, brainless condition, more like the after-effects of influenza than anything else.” Months pass by in between baths. Clothing is pawned. In the midst of this scramble to live, however, one forgets that there is, indeed, a lot of time with nothing to do at all: “you discover the boredom which is inseparable from poverty; the times when you have nothing to do and, being underfed, can interest yourself in nothing.”

Orwell based such descriptions largely on personal experiences. In 1927 he spent time in the company of tramps and beggars in London, dressed in worn-out clothing and sleeping in poor lodging-houses for two or three days. He subsequently moved to Paris and subjected himself to similar experiences. In doing so, he eventually brought attention to the plight of the poor, providing an honest, unvarnished look at what it was like to be down and out.
Rereading the book reminds me of Bellevue Hospital, New York City’s flagship public hospital. Bellevue, or its progenitor, was originally an infirmary in Manhattan in the 1660s and became the most well-known of the public hospitals in the country (I have written about it for Public Discourse). Here physicians treat the uninsured, the undocumented, and the homeless. It is a rare day when a physician at Bellevue does not interact with New York’s poorest residents.

Jim Henderson (Creative Commons)
Sometimes they come in search of medical care and sometimes they come in search of a meal. They stumble in from homeless shelters or from street corners, inebriated, withdrawing from drugs or alcohol, psychotic, suicidal, deathly ill or sober. Occasionally they unknowingly enter the emergency room with lice or bedbugs and nurses delouse them with multiple layers of permethrin, an insecticide. The physician must approach these infested patients with a hairnet, gown, and gloves — the lice crawl on the patient’s head, chest, arms and bed sheets. The smell sometimes overwhelms the doctor or nurse, too. It may have been months since the patient has bathed, and the odor percolates throughout the room and the hallway.

As I wrote in my Public Discourse piece, the patient presentations are frightening and remarkable:

Ride the elevator down, and you will stare in horror as an agitated drug addict with an infection tries to punch a physician while bolting out of his hospital room with security guards and nurses in pursuit. Next door, a homeless patient lies in bed with heart failure. Next to him is a patient who’s visiting New York from Africa with a raging AIDS infection. Peer into another room down the hall, and you can watch patients withdrawing from alcohol or heroin, thrashing about and screaming.

Physicians have the unique privilege at Bellevue to see poverty up close, which so rarely occurs in upper and middle class professions. But as close as we are, we don’t really understand the poor the way Orwell did. We don’t live amongst them or feel the curse of extended hunger or the uncertainty of when the next meal will come. We don’t experience that odd sensation of boredom, where there is nothing to do because one has nothing to do it with. And we cannot fully empathize with their fragile health.
This is why Orwell’s book is so enlightening. At least we get a description of what some of Bellevue’s patients may go through; at least we get a glimpse. It creates a little less space between the comfortable and the impoverished.

But Orwell wasn’t wholly right about the poor. He wrote in Down and Out:

The mass of the rich and the poor are differentiated by their incomes and nothing else, and the average millionaire is only the average dishwasher dressed in a new suit. Change places, and handy dandy, which is the justice, which is the thief? Everyone who has mixed on equal terms with the poor knows this quite well. But the trouble is that intelligent, cultivated people, the very people who might be expected to have liberal opinions, never do mix with the poor.

True, there is a closeness between “intelligent, cultivated people” and the “poor” simply by virtue of being human. However, there are deep differences that would not disappear if the two simply switched jobs and clothing. For instance, in 2016, four percent of U.S. adults experienced a “serious mental illness.” This did not cover patients without fixed addresses — the homeless. And      approximately one fifth of the homeless in the United States suffer from a severe mental illness. Even if the definitions of “severe” and “serious” don’t match up precisely, the difference between mental illness among the homeless and other US adults is huge. And these differences matter both to policy analysts and to physicians.

Two epidemiologists, Elizabeth Bradley and Lauren Taylor, have written a thoughtful book dealing with the issue of rising health care costs entitled The American Health Care Paradox. In it they argue that our skyrocketing health care expenditures (we spend more than double the share of GDP of other developed countries on health care) and poor outcomes (we are in the high 20s or low 30s in rankings among OECD developed countries for maternal mortality, life expectancy, low birth weight, and infant mortality) are not due to overspending, but rather to underspending by the United States on social services — affordable housing, education, access to healthy food, and so forth.

Bradley and Taylor explain how this happens:

Several studies have demonstrated the health toll of living on the streets; more than two-thirds of America’s homeless population suffer from mental illness or substance dependency, while nearly half have at least one additional chronic condition such as diabetes or hypertension. The high costs of health care provided to people who are homeless have been well documented. For instance, in one five-year period, 119 people who were chronically homeless and tracked by the Boston Health Care for the Homeless Program incurred a total of 18,834 emergency room visits estimated to cost $12.7 million.

This makes sense. Many of our homeless patients deal with chronic diseases like diabetes, mental illness, or congestive heart failure. We stabilize them in the hospital and send them back to a shelter or the street. Often they return the next week with exacerbation of their heart failure or sky-high blood sugars or psychosis, even when medication is provided by the hospital without charging the patient.

Thus a chasm separates our world and that of the poor, yet they are entangled. How can you get someone to start eating vegetables and fruits and whole grains in order to mitigate the effects of diabetes if they don’t have money to buy these foods? How can you control a child’s asthma if a family does not have money to clean their apartment and rid it of the vermin, bugs, and dirt that pervade the nooks and crannies? How can you ensure a psychotic patient takes his medication when he can barely feed himself? The homeless face a very different and more intimidating set of difficulties than the wealthy. And these translate into challenges for physicians, who do not have the time or skill to be both doctors and social workers.

We, as physicians, care for the patients until they are ready to leave the hospital. Then they face their poverty on the street. Our view is but a brief and skewed snapshot. In our myopic hospital world, the hospital stretcher is detached from daily life. And this is necessarily so, to a certain degree. Physicians can only do so much to fix societal ills — they cannot create a job, a safe home environment, or a loving family for the patient.

Nevertheless, both wealthy patients and poor patients succumb to cancer, strokes, and heart attacks. Both undergo the humiliating process of death and dying. In this sense, death and disease are often great equalizers. Neither the poor nor the rich can escape them. They rapidly close the chasm between the two classes. And at least in that vein, Orwell was right.

Tuesday, February 6, 2018

Locked In: What It's Like to Be Fully Paralyzed

On Friday, December 8th, 1995, Jean-Dominique Bauby, the 43-year-old French editor of the fashion magazine Elle, suffered a major stroke. He was behind the wheel of his BMW after picking up his son, and suddenly felt as though he were “functioning in slow motion.” His vision blurred and he broke out in a cold sweat. He barely managed to get himself and his son to the home of his sister-in-law, a nurse, who promptly took him to the hospital. At this point, Bauby could not speak or move his body. He slipped into a coma and woke up twenty days later to find that he was completely paralyzed except for his left eyelid. He could hear, see, and feel but could not move or speak — a condition known as locked-in syndrome.

Bauby’s once vigorous and ambitious life was reduced to a hospital bed in a rehabilitation facility at Berck-sur-Mer in northern France. Despite this fate, Bauby managed to “write” a book using eye blinking, The Diving Bell and the Butterfly (1997; adapted for the screen in 2007). His assistant slowly listed the letters of the alphabet and Bauby blinked his left eye to indicate the letter of choice. And so he wrote the book, letter by letter. Two days after its publication, Bauby died of pneumonia.

The French editor experienced a rare stroke in a relatively small area of the brain. In most cases a stroke, or death of brain tissue, is due to the blockage of an artery (ischemic stroke), but strokes can also be due to bleeding (hemorrhagic stroke). In Bauby’s case, a clot likely wedged itself into the basilar artery, a vessel supplying blood to the cerebellum and brainstem. This caused an ischemic stroke in an area of the brainstem called the pons. Because the brainstem connects the spinal cord to the brain, all of the motor fibers from the body converge here as they move up into the cortex. Given the relatively small size of the brainstem, it is unfortunately possible to knock out nearly all of these motor tracts, leading to Bauby’s clinical presentation.

I thought about the book and its author after encountering a patient experiencing a similar tragedy. Like the French editor, she was relatively young. She was a writer, too. She had collapsed in a supermarket and opened her eyes to the cold and dark reality of complete paralysis, relying on a ventilator to help her breathe. I saw her every morning for two weeks. I listened to her heart and lungs or drew her blood. When she opened her right eye on a regular basis, we asked our speech pathologists to help her communicate. They trained the patient to look up for “yes” and down for “no.”

There were days when the patient was too exhausted to participate in these exercises or when she had an infection, or seemed to decline and failed to answer or understand basic questions asked of her. Her mother sat at bedside each day conversing with her and encouraging her. In these situations we typically speak with family members about the goals of care for their loved ones. What would the patient say if she could speak? Would she want us to do everything we could to keep her alive, such as cutting a hole in the throat, a tracheostomy, so she could breathe without a breathing tube? Or would she want us to withhold surgeries? These are always difficult discussions for doctors and family members as we all attempt not only to predict what the patient would want but also to separate ourselves from what we want. The mother, however, did not hesitate — she asked us to do everything to keep her daughter alive.

What, indeed, would the patient say if we asked her? And what was she experiencing at that very moment? Fortunately, Bauby left behind a view into the world of locked-in patients. They are very much aware of the world around them even if they cannot demonstrate it. Some of this occurs within the imagination, as Bauby writes: “You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions.” These fantasies can bring relief to patients:

For pleasure, I have to turn to the vivid memory of tastes and smells, an inexhaustible reservoir of sensations.... Now I cultivate the art of simmering memories. You can sit down to a meal at any hours, with no fuss or ceremony. If it’s a restaurant, no need to call ahead.... Depending on my mood, I treat myself to a dozen snails, a plate of Alsatian sausage with sauerkraut ... or else I savor a simple soft-boiled egg with fingers of toast and lightly salted butter. What a banquet!

But rumination can turn to tragic thoughts as well. Bauby thinks of his ninety-two year old father who can no longer descend the staircase of the apartment building. Bauby used to shave his father; now someone needs to shave Bauby. He watches his children play and feels them embrace him without being able to respond.

Such helplessness leaves one vulnerable to the outside world, too. An ophthalmologist examines Bauby without his consent — Bauby cannot tell this physician to stop. He is aroused by the terrifying sight of a doctor standing over him while sewing up his non-functional eye. After all, when a patient lies in bed without speaking, it can be tempting to see him or her as a specimen rather than as a human.

What is most disturbing, though, is the way life seems to march on without Bauby. He writes,

I am fading away. Slowly but surely. Like the sailor who watches the home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memory.

When doctors bring him to Paris for more specialized examinations, Bauby notices the building where he used to work and people he used to know, all engrossed in the day-to-day business of life, while he is seemingly frozen in time: “The treetops foaming like surf against glass building fronts, wisps of cloud in the sky. Nothing was missing, except me. I was elsewhere.”

Jean-Dominique Bauby’s book is tremendous and beautiful not simply because his story and words are so affecting. It gives voice to the patients we are often tempted to brush off — there is a person within the heavy immobile flesh. And if there is a book inside the mind of one, of course there are books inside the minds of others. (However, as I’ve pointed out elsewhere, great accomplishments are unnecessary to demonstrate the value of a human life.)

Thankfully, locked-in syndrome is not a death sentence; nor is it necessarily a fate worse than death. Patients can recover after such a devastating injury. The Guardian published a story in 2012 about a patient who regained most of his motor function after being locked in. A 1995 study of 11 patients with locked-in syndrome found that all of the patients regained enough control of fingers or toes to use a digital switch. In a 2003 study, authors concluded that five- and ten-year survival rates for patients with stable locked-in syndrome were 83% and 83% respectively (that number dropped to 40% at twenty years). Of the patients in the study, only one wanted to die, but seven of them never even considered euthanasia, while six did but rejected it.

To become locked-in is not the end. This should give us pause about withholding aggressive treatment from these patients. They are still very much with us, and with luck and modern medicine perhaps we can bring parts of their bodies back.