Wednesday, March 30, 2016

Managing Expectations

“Yes. But could I endure such a life for long?” the lady went on fervently, almost frantically. That’s the chief question — that’s my most agonizing question. I shut my eyes and ask myself, Would you persevere long on that path? And if the patient whose wounds you are washing did not meet you with gratitude, but worried you with his whims, without valuing or remarking your charitable services, began abusing you and rudely commanding you, and complaining to the superior authorities of you (which often happens when people are in great suffering) — what then?
Fyodor Dostoyevsky, The Brothers Karamazov

I have a collection of idyllic memories from my childhood summers, traveling with family to the sleepy New England town of Lenox, Massachussetts. There we would go hiking, watch movies, attend concerts by the Boston Symphony Orchestra at their summer retreat in Tanglewood, and swim. And we never failed to visit the Norman Rockwell Museum in Stockbridge. Rockwell was one of the most well-known American painters of the twentieth century and some of his famous works appeared on the covers of the Saturday Evening Post. His humorous, sentimental, and occasionally somber paintings capture everyday American life during the early and mid-twentieth century, portraying families eating dinner, children arguing about a basketball game, and teenagers at a lunch counter.

Norman Rockwell, Doctor and Doll (1929)
Curtis Publishing

One painting in particular sticks out in my mind, Doctor and Doll, drawn for the Saturday Evening Post cover of March 9, 1929. A dapper physician in a suit and tie sits in a chair. A young girl in her winter clothes with a hat, scarf, and mittens scowls at the doctor, reluctant to let him examine her. She’s upset, as so often children are, to be seeing a physician. She holds her doll up to him as he gently pretends to listen to the doll’s heart with his stethoscope. He plays along with the young girl, earning her trust so that he can, perhaps, listen to her own heart next. The doctor does not look down at a note or a chart while taking care of his patient. He’s not rushing to leave. He merely attempts to establish trust and takes the time necessary to earn it. It is the paradigmatic image of what we want a doctor’s interaction with a young patient to look like, an idealistic portrayal. And Rockwell realized that this was true of many of his paintings. He once said: “The view of life I communicate in my pictures excludes the sordid and ugly. I paint life as I would like it to be.”

But hyperbole, though an artistic strategy, is not always evident to children on family vacations. While the Rockwell painting does not exactly illustrate my expectations of medicine, it does exemplify a certain naïveté with which I approached medical school. I knew I would work incredibly hard and I also knew, after reading firsthand accounts from several physicians, that I would see horrible things. However, I retained some of that boyish optimism about medicine and imagined that the majority of my interactions with patients would be as depicted in Rockwell’s painting.

Since then, however, much has changed. I was recently chased down the hall by a psychiatric patient who had a low sodium level (which can lead to seizures). We needed to get a sample of his blood to recheck his electrolytes, but he refused and when I tried to explain to him why we needed to get labs, he jumped out of bed and ran after me, saying: “I’m going to f***ing show you how I do things.” Another patient recently told me “I don’t need to f***ing be here” and ran out as I chased after him. I have been called an “idiot” and a “fraud.” I have also been screamed at, given the middle finger, and physically threatened. Yet another patient threatened to report me to the New York Times because his room was too hot. I have tried convincing countless numbers of patients (sometimes successfully and sometimes not) to take life-saving medications. I saw a patient fall out of her bed, micturate on the floor, and go into cardiac arrest. Another patient threatened to slap me after I ordered an EKG to examine his arrhythmia more closely. There have been times when I have had to choose between spending time writing notes and speaking with patients and their families — and have paid the price for choosing the former. I have performed CPR more times than I’d like to think about. And there is, I am certain, more to come.

None of this is evidence that I have come to dislike practicing medicine. I selectively edited out the brighter episodes to make a point: medicine is a universe away from what most of us perceive it to be. It is far more dark, depressing, and quick-paced than anything I imagined. It is, in short, messy. But I believe it has always been this way. Samuel Shem’s The House of God, published in 1978, is a satirical novel filled with familiar yet horrific stories and bizarre interactions that characterize a physician’s first year of residency. (I’ll write about this book in another post.) That experience of some forty years ago is hauntingly similar to my own. The passage at the beginning of this post from The Brothers Karamazov, completed in 1880, resonates with me as well.

Residency has altered my expectations. Humans have always been sick and will probably always face sickness and death. And sickness and death are deeply unsettling experiences that sometimes prompt strange and disturbing behaviors. They challenge our youthful notions of invincibility and immortality. They expose our weakness and decrepitude and force us to confront an end that none of us can face with a straight spine. A hospital lays bare these notions — and the whole experience makes it difficult to be calm, reasonable, and understanding. Who can be levelheaded in this perpetual twilight?

For that we must return to Rockwell’s comforting painting, a glorified image of what we want from medicine. If we look closer we may see the painting differently. The doctor has made little progress with his patient. The girl has not removed her hat, scarf, or shoes. She has not yielded one bit. She merely lets her doll be the “patient.” And yet the doctor readies himself to do whatever it takes to help her. Almost imperceptibly smirking, he patiently listens to the doll’s chest. He is not angry or frustrated but sympathetic. Perhaps we can face the daily frustrations of the hospital better with some of that Rockwellian spirit to strive for life as we would like it to be.

Friday, January 29, 2016

Becoming Cynical, Part 4

I have written quite a bit about why physicians become cynical (see herehere, and here). What follows are some more thoughts on this topic that relate to my previous post on Parkinson’s Disease (PD).

Recently, a sixty-three-year-old patient came to the neurology clinic for a left-handed tremor that had become worse. He and his wife gave a classic history of the onset of PD. His tremor occurred only at rest. He felt his left arm was weaker than his right arm — this was evident in some sessions with his personal trainer. He noticed his handwriting had become slightly smaller. And his wife said she couldn’t hear him well anymore. She initially thought it was due to her own hearing loss, but her friends also found that his voice had become harder to hear. The attending physician and I asked other questions regarding sleep (sometimes PD patients act out their dreams), drooling, and cognitive status. After a physical exam, a cognitive test, and some more questioning, the attending physician concluded that the patient had PD.

At this point in my short career I had seen multiple patients with PD, some in its early stages, some advanced, and some in-between. I was at least superficially familiar with the course of the disease. So when we broke the news to the patient and his wife, it felt slightly banal: another PD patient, another diagnosis, and another prescription for PD drugs.

Shutterstock
But this patient’s reaction took me by surprise. Most people are upset, ask for some information about the disease, take their prescriptions and leave. But in this case, the patient’s questions were far more detailed than I was used to (the attending, given the extent of his experience and knowledge knew exactly what to say). The conversation eventually led to a discussion about the advanced stage of the disease. We explained that medications and deep brain stimulation would become less and less effective. Ultimately, he would get dyskinesias and end up in a wheelchair.

We all know we’re going to die — that is one of the few things in medicine that one can say is 100 percent certain. But there is something eerie about hearing exactly how you’re guaranteed to deteriorate. The attending was telling the patient in a very diplomatic way that his life would look just so in about twenty years. It was said gently, but the patient understood the meaning well. His wife began to cry and he teared up, too. His movements, his hobbies, and control would slowly peter out and vanish.

After I told this story to someone with experience in the medical field, the person responded with, “I don’t know what they’re so upset about — it’s just Parkinson’s Disease.” This probably seems callous and insensitive. Just PD? Think of the horrible symptoms, the side effects of the medications, the creeping debilitation. Imagine, eventually, being locked-in, frozen and unable to move, relying on a pill that becomes less and less effective for allowing such simple functions as turning around or walking. It is indeed a terrible disease.

But for a physician who has seen far worse — such as ALSCreutzfelt-Jakob diseasetrauma, Sudden Infant Death Syndrome (SIDS), all of which involve rapid debilitation and death — PD can seem preferable, with its long course and all the available treatments, however limited they may be.

This tendency to compare the severity of varying illnesses is perhaps one of the greatest traps in practicing medicine. Physicians see so much that diseases that are serious to most patients seem mild relative to the more horrifying ones. I have found myself falling into this pit more than once. I remember doing CPR on a patient who had burst a pulmonary artery (a major artery in her lungs) as a complication of her lung cancer. As I did chest compressions, blood poured out of her mouth and onto my pants, soaking my shoes and scrubs. While this was going on, I got a call from a nurse about a patient with a history of drug abuse who wanted more pain medication. He may very well have been in serious pain. But compare his needs to this woman’s death. Clearly, one was much more affecting, disconcerting, and significant than the other, and it was a while before I could address the drug patient’s pain appropriately. It can be all too easy to dismiss as a “mild” disease or complaint the sorts of conditions against which our exposure has hardened us.

Thus, with experience, our expectations change; it takes more to move us. We shrug off the majority of hospital cases as “not that bad” or “benign.” I think all this is inevitable in a career in medicine. One must pinch oneself every day, at the very least, to recognize it.

Wednesday, January 6, 2016

The Parkinson’s Patient


In 1817, Dr. James Parkinson, an English surgeon, scientist, and political activist, wrote in An Essay on the Shaking Palsy about a new medical pathology. In this work, he describes the characteristics of what would later be called Parkinson’s Disease (PD). The essay is worth examining because it offers a perspective on a disease that we see quite often — PD is one of the most common debilitating neurologic disorders today, affecting about 1 percent of people over sixty.
Parkinson set out to characterize the illness by doing what a scientist ought to do, observing and taking notes:

The disease is of long duration: to connect, therefore, the symptoms which occur in its later stages with those which mark its commencement, requires a continuance of observation of the same case, or at least a correct history of its symptoms, even for several years.

The onset of PD is extremely subtle; its initial symptoms are “slight and nearly imperceptible.” Nevertheless, patients generally experience a sense of weakness and a minor unilateral hand tremor at rest (the typical tremor is exhibited in this video). Soon, “the morbid influence is felt in some other part,” perhaps the leg on the side of the affected hand. Other symptoms arise over months to years, too, making precise manipulation, for instance when writing, more challenging:

As the disease proceeds, similar employments are accomplished with considerable difficulty, the hand failing to answer with exactness to the dictates of the will. Walking becomes a task which cannot be performed without considerable attention. The legs are not raised to that height, or with that promptitude which the will directs, so that the utmost care is necessary to prevent frequent falls.

In addition to falling frequently, patients’ handwriting shrinks in size (this is known as micrographia); they experience difficulty sleeping and increased severity of tremors (eventually affecting both hands and both legs); the disease even alters speech, causing patients to speak softly (hypophonia); and uncontrolled drooling occurs along with increased muscle rigidity. Patients often feel frozen in space, trapped by the inability of their muscles to obey their commands.

Parkinson describes the last stages of the disease as follows:

The chin is now almost immoveably bent down upon the sternum. The slops with which he is attempted to be fed, with the saliva, are continually trickling from the mouth. The power of articulation is lost. The urine and fæces are passed involuntarily; and at the last, constant sleepiness, with slight delirium, and other marks of extreme exhaustion, announce the wished-for release.

And yet, despite Parkinson’s detailed knowledge of the disease course, there was no real indication as to the etiology or pathology of it. One can sense Parkinson’s frustration with the ignorance of the scientific community:

We are in fact as little informed respecting the nature of the affection, inducing the carious state of the vertebræ, as we are respecting the peculiar change of structure which takes place in this disease. Equally uninformed are we also as to the peculiar kind of morbid action, which takes place in the ligaments of the joints; as well as that which takes place in different instances of deep seated pains and affections of the parts contained in the head, thorax, and abdomen....

As for “the means of cure,” Parkinson writes, “nothing direct and satisfactory has been obtained.” Indeed, he proposed a treatment that seems absolutely bizarre to us today: drain blood from the upper part of the neck. One theory held that the disease came from irritation of the theca, a covering of the spinal cord, leading to inflammation and pressure. According to Parkinson, draining the blood could release that pressure and mitigate symptoms.

Though this treatment amounted to very little, Parkinson does conclude his work with some hope:

There appears to be sufficient reason for hoping that some remedial process may ere long be discovered, by which, at least, the progress of the disease may be stopped. It seldom happens that the agitation extends beyond the arms within the first two years; which period, therefore, if we were disposed to divide the disease into stages, might be said to comprise the first stage. In this period, it is very probable, that remedial means might be employed with success: and even, if unfortunately deferred to a later period, they might then arrest the farther progress of the disease, although the removing of the effects already produced, might be hardly to be expected.
*     *     *
Looking back at Parkinson’s essay with today’s knowledge about the disease, we can say that his descriptions are unusually accurate for a medical text that is two centuries old. In fact, many of the patients I’ve seen in clinic today with Parkinson’s disease have stories identical to those described by Parkinson. However, there are a few corrections that we need to make. First, Parkinson neglects to mention the dramatic changes in facial expressions among these patients — a practiced observer can pick out a PD patient merely by making eye contact.

I saw a seventy-year-old female in clinic with a new diagnosis of the disease. She had the classic hand tremor and muscle rigidity, but I remember her face the most. It was haunting. She rarely blinked and stared with the utmost intensity, not quite sure when to look away. That small social grace of breaking eye contact had been lost. The eyes peered, not vapidly, but creepily. They challenged you to speak or break the stare. The whole face seemed devoid of a crucial aspect of its human expressiveness. I noticed no smile or frown even when I joked around with her. Her expressions contained a strange mixture of repressed anger and stoicism. Facial signals, emotions, and features are dampened and even nonexistent in PD to a frightening extent. And imagine the emotional pain that comes with the knowledge that your face publicly separates you from everyone else.

Parkinson also did not know anything about the pathology of the disease. We now understand that the disease can be linked to the death of neurons. Specifically, neurons that release dopamine in the brain in the substantia nigra die off, leading to an overall reduction in dopamine in the brain. The disease causes symptoms after 80 percent of these dopamine-producing neurons are lost. Why this happens is still unclear — approximately 85 to 90 percent of the cases are idiopathic (meaning the cause is unknown) and 10 to 15 percent of affected patients have a first-degree relative with the disease (and we’ve identified at least some of the genes that are associated with PD). But there are interesting non-genetic factors that contribute to the risk for developing the disease. Pesticide exposure and the drinking of well water have been linked to PD (see for instance chapter 77 of the textbook Neurology of Movement Disorders by Haq, Foote, and Okun). And the use of tobacco, bizarrely, has been inversely associated with risk for the disease.

Thankfully, though, the treatments for PD have improved tremendously over the last few decades. Dopamine agonists and medications like carbidopa-levodopa stimulate dopaminergic receptors in the brain, freeing patients from their feelings of bradykinesia (slow movement) and rigidity. One patient I spoke with called his medications “a miracle.”

Deep Brain Stimulation (DBS) also dramatically improves patient’s symptoms. Neurosurgeons implant a thin electrical wire either in the globus pallidus internus or the subthalamic nucleus — two different parts of the brain — which then connects to a pulse generator. This generator sends electric pulses into the brain, and symptoms can change almost immediately. I clearly recall my first encounter with a patient who received DBS. In the exam room, the attending physician increased the voltage going through the generator and the patient’s tremor gradually decreased until it disappeared. It was absolutely incredible to witness.

There are, of course, side effects to these medications and procedures. Impulsivity is one that I have had a particular interest in: patients on dopamine agonists and with DBS can take up gambling, excessive shopping or risky sexual activity. Additionally, the medications can cause nausea, vomiting, dizziness, hallucinations, and constipation. The most serious side effects of a drug like carbidopa-levodopa are dyskinesias, which occur after long-term use. Dyskinesias are involuntary movements: patients writhe sometimes fluidly and sometimes suddenly. An arm shoots up in the air and is forcefully pushed down into one’s lap; the tongue hangs out of the patient’s mouth and licks the upper and lower lips; the lips smack together uncontrollably; legs kick. The patient seems to be possessed. Since these are uncontrollable, patients are not only forced to do things they don’t desire but are also faced with the stigma of their unusual behavior when they leave the home.

Dr. Oliver Sacks, the late neurologist, writer, and professor at NYU, describes one unusual method of dealing with parkinsonian symptoms in his book, Musicophilia. He observes the fascinating, rare, and still mysterious response a particular patient had to playing music:

If one walked her down the hallway, she would walk in a passive, wooden way, with her finger still stuck to her spectacles.... As soon as she sat down on the piano bench, her stuck hand came down to the keyboard, and she would play with ease and fluency, her face (usually frozen in an inexpressive parkinsonian “mask”) full of expression and feeling. Music liberated her from her parkinsonism for a time — and not only playing music, but imagining it. Rosalie knew all of Chopin by heart, and we had only to say “Opus 49” to see her whole body, posture, and expression change, her parkinsonism vanishing as the F-minor Fantasie played itself in her mind.

Even with all these treatment options, nothing halts the progression of the disease. Many patients I have met in the neurology clinic have had PD for almost twenty years, and their symptoms severely affect their lives. They have dyskinesias; their medications last for a much shorter period of time than they did years ago; they use a wheelchair; some of their voices barely rise above a whisper; and some have drool constantly leaking from the corners of their lips. Modern therapeutics hold the symptoms at bay for only so long.

But perhaps we, like Dr. James Parkinson, can hold out some semblance of hope. In an article in the New York Times in February 2015, Jon Palfreman, a professor of broadcast journalism at the University of Oregon and author of the book Brain Storms, described his own experience with PD. He explains that one biotech company is now experimenting with genetically engineered compounds from viruses to neutralize specific proteins that build up in the brain and may be implicated in PD. This is a very interesting development and one that we ought to keep our eyes on. Clearly, we have come a long way from draining blood in order to treat PD. But we are also far from being able even to slow it down, much less stop it.

Thursday, November 12, 2015

Beauty, Biology, Music, and Math

As physicians, we rarely consider the healthy human body. We learn about normal human physiology during our first year of medical school but soon afterwards are exposed solely to pathology. In the hospital we almost always inquire, “What is going wrong here?” but rarely ask, “What is going right here?” It is worth taking a moment to examine well-functioning human biology. Let’s start with a deep breath.

Your diaphragm contracts and pushes downward against your liver, spleen, and stomach. Your chest expands and sucks in molecules of oxygen, nitrogen, and other gases through your nostrils and mouth. These airway entrances humidify and warm the gases while filtering out foreign bacteria and dirt. Air travels deep into the lungs along a system of progressively smaller passageways until it reaches the alveoli, compartments at the termini of the lung lobes. Here, red blood cells passing through adjacent vessels pick up oxygen from the alveoli in exchange for carbon dioxide, a waste byproduct of the energy exchange in each cell in the body.

Next, the red blood cells carrying oxygen travel through the pulmonary vein to the left atrium of the heart. During diastole, a period of relaxation of the heart, the left ventricle expands like a sponge and fills its chamber with the blood from the left atrium. This muscular left ventricle subsequently contracts and forces blood into the aorta, the main artery of the body. The aorta squeezes and moves the plasma forward. Then, it splits into two different pathways — some of it ascends into smaller arteries that move up into the arms and the brain and some of it descends into smaller arteries in the abdomen, legs, and toes. Either way, the flow is highly pressurized and continues to be guided along by the muscular arteries. Each artery further branches off into arterioles, or small arteries. These arterioles also decrease in size and eventually become capillaries, which are so minuscule that red blood cells have to move through them single file.

In the capillaries, another exchange takes place: the red blood cell offloads oxygen and picks up carbon dioxide. Cells from other tissues, like muscles and the gastrointestinal tract, pick up the oxygen and use it for aerobic respiration, a complex biochemical reaction that creates energy for all kinds of cell tasks and thus for everything that human beings do. You can digest food, speak, and read because of energy. And you have energy because of oxygen.

The red blood cells continue their single-file journey. But, something begins to change. This time, the vessels enlarge as they coalesce and converge. They become venules and then veins. Unfortunately, veins are not muscular in the way that arteries are. Blood, then, is pushed forward because of the back pressure from more and more blood that builds up. Additionally, one-way valves within the venous system prevent backflow, ensuring that the deoxygenated blood continues to move forward. And even as we walk or stretch, our contracting muscles push against the veins and coax the red liquid’s movement.

Finally, blood arrives in the Superior and Inferior Vena Cava, large vessels that lead into the right atrium of the heart. During diastole, blood enters the right ventricle. During systole, a period where the heart contracts, the right ventricle squeezes blood into the pulmonary artery and eventually into the lungs where the process repeats itself.

There is beauty in this cycling system. It repeats itself with every heartbeat, over sixty times a minute, every hour, every day, for one’s entire existence. The efficiency, the speed, the different parts — the whole thing is stunning. And as we delve even deeper into how this whole system works we uncover more relationships that demonstrate our impressive biology.

The volume of blood that the heart pumps out is called cardiac output. We can calculate the cardiac output by multiplying the heart rate and the systemic vascular resistance, or the resistance that must be overcome to push blood through the vessels. The mean arterial pressure, or the average pressure in the arteries during one heartbeat, can be calculated by adding two-thirds of the diastolic pressure (the pressure while the heart is relaxed) and one-third of the systolic pressure (the pressure in the arteries when the heart is squeezing). Alternatively, multiplying the cardiac output and the systemic vascular resistance and adding the central venous pressure, the pressure of the blood in the veins as it returns to the heart, can also give you the mean arterial pressure. As one can see, elements of the whole system are related to each other mathematically. These relationships allow for push and pull: change one side of the equation and the other side changes to maintain balance. Increase heart rate and the systemic vascular resistance may decrease in order to maintain cardiac output.

In addition to the mathematical relationships between our internal organs, there are musical relationships, too. Like the percussionist, the heart maintains the rhythm and slows or quickens pro re nata (as needed). Using musical terms, we might say that during exercise the heart beats in presto or allegro; during the moments before sleep, perhaps andante. Our breathing coincides with the beating of the heart. Our lungs whoosh as they fill up with air and suddenly deflate as air rushes out. This, too, is rhythmic and audible. The intestines and stomach churn and rumble as they break down food and move waste through the long gastric tunnel.
*     *     *
In his beautiful book Emblems of Mind (1995), Edward Rothstein, critic at large for the Wall Street Journal — and, full disclosure, my father — examines the relationship between music and mathematics. Reading it from a medical perspective, one immediately notices how integrated mathematics and music are in human biology, beyond the superficial examination we gave these relationships above. Let’s take our discussion of the musical aspects of human physiology, for example. Rothstein explains,

A rhythm is not like a sequence of numbers at all; it is closer to our experience of continuous time. When we feel rhythm subtly, it is not like the thumping of a mechanical drum machine, with accents calculated and then routinely repeated; it is more like the movement of a conductor’s baton or Fred Astaire’s feet. The model for rhythm is not the goose step but the breath — the inhale and exhale — or the heartbeat, with muscular contractions of interior chambers. This sort of rhythm slides and elides.

There is something beyond just mechanics in the musical ensemble of our bodily rhythms. The beatings of our heart and contractions of our bowel muscles are continuous despite the pauses or rests in between them. Pauses mean just as much to our efficient functioning as the muscular contractions themselves. If there are no rests in between heartbeats, for instance, the heart cannot fill with blood and thus cannot pump oxygen to the rest of the body.

Rothstein continues:

Music’s great energies derive from the creation of continuity out of discontinuity — a sort of inversion of the calculus, interested not in the infinitesimal and the instantaneous but in the ways they combine into the gestural and fluid that resembles some inchoate way our inner life.

As with music, our body changes and moves such that at any instant something new is happening. But physicians are not as interested in the instantaneous as in the trend. Is there consistency in the heart rate? Is there consistency in the blood pressure? Is it low or high over an extended period of time? What does this tell us about the relationship between the cardiovascular, pulmonary, and nervous systems? We want to know how these measurements combine to create the clinical picture of a fully functioning and continuous human life.

And what about the mathematical relationships between our blood pressure and heart rate that I described and that are so integral to our cardiovascular system? In a section on the subject of topology Rothstein writes,

Differences and similarities are established through mappings, which can even link objects that at first appear to be drastically different. These mappings can themselves become the object of intense scrutiny. “Mathematicians do not deal in objects,” Poincaré [Henri Poincaré, a French mathematician] observed, “but in relations between objects; thus, they are free to replace some objects by others so long as the relations remain unchanged.”

Now let’s go back and consider the heart’s relationship to blood pressure. The heart beats and the vessels contract and relax to increase or decrease pressure. As the blood pressure decreases, the heart rate increases in order to maintain cardiac output — to keep the same amount of blood flowing through the vessels and reaching our brain, liver, and kidneys. These mathematical linkings or mappings allow us, as physicians, to make hypotheses about what is going on inside the body. We can place variables in the system and draw conclusions because these mathematical relationships are constant. For instance, giving a patient a medication that increases blood pressure may cause the heart rate to decrease. Like mathematicians, physicians deal in relationships between things that may not always seem like they are related.

By sharing fundamental principles with music and mathematics, human biology is certainly a thing of great complexity. But it is also beautiful. In thinking about our circulatory system, its sounds, its relationships, there is no doubt that, as Rothstein describes in a passage about the sublime, it is “tremendous, awful, and humbling, yet also elevating.” He notes,

The sublime is linked to limitlessness and the infinite, yet it also has its effect because that limitlessness is somehow grasped and experienced at once, as a single whole.... It makes the imagination seem inadequate while giving our understanding an almost ecstatic sense of having apprehended what should be beyond its containing powers. The effect of the sublime is not out there, in the world of objects, but in the experience of the subject. The sublime is part of inner, not outer life.

Think of the circulatory system again and its millions of cells carrying and distributing oxygen, picking up carbon dioxide, squeezing single-file through capillaries — all this occurring constantly as we rest, move, and eat, and on such an infinitesimal scale and in such a limitless fashion. Imagine trying to invent or create such a system. One’s imagination may be inadequate. Nevertheless, we can just barely grasp these repetitive events, which are happening as you read and as I type. Our cells “echo up and down the line, in all our caverns.” They die and are replaced. They work and seem never to rest. They perpetuate the indefatigable to and fro of the circulatory system and the life of the human being, “knowing that the end of one journey is just the beginning of another.”

Thursday, October 15, 2015

The Problem with the New Patient Autonomy

The neurology team shuffled single-file into the patient’s small room. The patient, probably in his 30s, had black hair, brown eyes, and an unsettling demeanor. He glared icily at us from his bed, the blankets covering him up to the neck. His pale brow furrowed even more noticeably as all nine of us intruded on his privacy. In a scene out of a futuristic movie, EEG (electroencephalogram) leads on his scalp connected his head via wires to a screen showing squiggly lines representing brain activity; a small video camera attached to the screen monitored the patient’s movement. He had come to the hospital overnight after falling and shaking, a story worryingly suggestive of a seizure.

Brain waves on EEG
Image via Shutterstock

An electroencephalogram records neuronal signals in the brain and is used by neurologists to diagnose seizure activity. When a patient has a seizure, which can manifest as full-body convulsions, a family member in the room pushes a button on the machine which starts the video camera recording the patient’s movements. Then, neurologists examine the movements in the video and the waves tracked by the EEG to see if they are consistent with seizures.

There are different kinds of seizures depending on which part of the brain is affected. Symptoms range from a loss of attention for a few seconds (absence seizures) to full-body convulsions which we typically associate with seizures (generalized tonic-clonic seizures). Different conditions can cause these events — for instance, high fever as a child (febrile seizures) and brain tumors can induce hyper-excitability in the brain. If the seizure does not stop, a patient can enter status epilepticus, a state of prolonged epileptic activity that can cause permanent damage.

Having a seizure, then, can be very serious business. Physicians must perform a medical work-up to ensure that the patient is not at great risk. In addition to an EEG, our patient’s neurologist ordered labs and a CT scan of the brain. However, these tests were all negative. Even overnight, when the patient and his mother both claimed that the patient seized, there were no abnormal electrical discharges on the EEG.

Indeed, not all physical manifestations of seizures indicate the presence of legitimate seizure activity in the brain, which is why the EEG is such a valuable diagnostic tool. It turns out that certain patients may believe they are having seizures when they are actually having pseudoseizures or psychogenic non-epileptic seizures. To most observers, pseudoseizures look exactly like generalized tonic-clonic seizures. Patients shake, tense up, and flail violently and frighteningly. However, certain differences exist that distinguish them from each other. During pseudoseizures, EEGs show no abnormal brain activity, patients do not bite their tongues (this can occur with real seizures), and patients do not respond to anti-epileptic or anti-seizure medications. It’s not that patients undergoing pseudoseizures aren’t sick, it’s just that their sickness has nothing to do with neurological pathology or seizure activity.

Frequently, patients who experience pseudoseizures do have underlying psychiatric disorders, like anxiety or PTSD, but not always. Other risk factors and triggers include interpersonal conflicts, childhood abuse, and past sexual abuse. Seemingly, then, a pseudoseizure is a symptom of a psychiatric illness. Another factor that distinguishes pseudoseizures is that patients are conscious during the events. I’ve seen one attending push down hard on a patient’s hand during a pseudoseizure while telling the patient he was going to do so. The patient suddenly awoke before the attending pushed hard enough to hurt the patient. (If the patient was having a generalized seizure, he would not have felt anyone pressing on his hand nor would he have heard anyone giving him a verbal warning of it.)

In explaining the concept of pseudoseizures to a patient who has them, one must take great care. If a physician tells a patient, “these are not real — it is in your head, so grow up,” no one will benefit. Psychiatric illness cannot be fixed with a stern rebuke. One must explain that these are not seizures and that it will take time to fix whatever is happening, but anti-seizure medications will not help. (While there are no medications for pseudoseizures, behavioral therapy can be efficacious.) Through this conversation, one hopes the patient will seek help from a psychiatrist.

The patient we saw that morning did have pseudoseizures rather than seizures, as the EEG and the video of his body movements indicated. Additionally, and tragically, he had a horrific childhood and had been physically abused by his father. The attending explained all this very gently in the course of nearly twenty minutes. When he finished, the patient and his mother both burst out indignantly: How could this physician ignore the symptoms? How could he be so callous as to dismiss this disease? Why wouldn’t he prescribe medications? Why did he not order an MRI of the patient’s brain (an expensive type of imaging) to further investigate the cause of this? In the patient’s words: “I’m not believing any of this bullshit.” Although the physician calmly tried to explain everything again, the patient refused to listen and eventually the team left to continue rounding. Still enraged, the patient called the customer-service department of the hospital and continued to argue with the team throughout the day. Eventually, after numerous disputes, our attending physician caved (and who could blame him given that there were nineteen other sick patients on the service who needed his attention?): the patient got what he wanted, an MRI study which showed nothing abnormal.

Unfortunately, this is a weekly if not a daily experience in hospitals across the country. Patients frequently make inappropriate requests of physicians, which are subsequently granted. What has brought our system to the point where a patient issues orders and the physician must about-face from a medically sensible course?
*   *   *
In ancient times, patients had very little, if any, autonomy, as R. Kaba and P. Sooriakumaran point out in their 2007 article, The Evolution of the Doctor-Patient Relationship in the International Journal of Surgery. Doctors decided what was good for patients and what wasn’t. There was no informed consent — a doctor told a patient what the patient needed and expected him or her to comply.

This interaction may have evolved from the ancient Egyptian “priest-supplicant” relationship, in which magicians and priests with access to gods conjured up cures for various medical disorders. The patient, without a modicum of holiness, had to supplicate to the priest, or father figure, in order to get well. Even for the Greeks, who developed slightly more scientific ways of approaching disease and more ethical ways of approaching the patient (see the Hippocratic Oath), the doctor was a paternalistic figure granting “hard-line beneficence” to the patient. All this was akin to a parent-child relationship, a model for the doctor-patient interaction that was considered normal even in the mid-twentieth century, as I wrote in my essay on vaccines for The New Atlantis:

The unchecked authority of medical experts in those days allowed doctors to trammel the rights of both patients and research subjects. Many of those whose research laid the foundations for modern vaccines, such as Jonas Salk, Maurice Hilleman, and Stanley Plotkin, tested their vaccines on mentally retarded children. Starting in the mid-1950s and continuing for about fifteen years, the infectious-disease doctor Saul Krugman fed hepatitis virus to severely disabled residents of the Willowbrook State School in order to study the virus. The enshrinement of patient autonomy in the 1970s was in part a response to these very serious ethical problems.

Recently, though, things have changed:

Over the past few decades, however, the boat has tipped to the other side. Now, patients rate doctors online at sites like Healthgrades or Yelp or Vitals the same way one rates a restaurant. This puts pressure on physicians to give patients what they want rather than what they need in order to garner more business. The government bases Medicare reimbursements, in part, on patient satisfaction scores, putting further pressure on physicians to make patients happy [In fact, patient satisfaction score surveys play a significant role in determining how much money hospitals receive from Medicare.] Dr. Richard Smith, former editor of the British Medical Journal, has explained that the increasing power of patients is bringing us to a point where “there is no ‘truth’ defined by experts. Rather there are many opinions based on very different views and theories of the world.” If a patient wants a test or procedure, he or she can have it. The same goes for refusing it, even against the advice of doctors.

This modus operandi of allowing patient satisfaction to dictate medical care is becoming more and more common. It is even encouraged. Kai Falkenberg, a journalist, notes in a must-read 2013 article in Forbes,

Nearly two-thirds of all physicians now have annual incentive plans, according to the Hay Group, a Philadelphia-based management consultancy that surveyed 182 health care groups. Of those, 66% rely on patient satisfaction to measure physician performance; that number has increased 23% over the past two years.

And that’s not all, according to her article. These metrics encourage physicians to do things that are not always in the best interests of the patient:

In a recent online survey of 700-plus emergency room doctors by Emergency Physicians Monthly, 59% admitted they increased the number of tests they performed because of patient satisfaction surveys. The South Carolina Medical Association asked its members whether they’d ever ordered a test they felt was inappropriate because of such pressures, and 55% of 131 respondents said yes. Nearly half said they’d improperly prescribed antibiotics and narcotic pain medication in direct response to patient satisfaction surveys.

Satisfying patients and practicing good medicine are not always the same. Data on this abounds. A 2013 study by physicians at Johns Hopkins demonstrated little evidence that patient satisfaction corresponds to the quality of surgical care. Furthermore, in a 2012 study, physicians at UC Davis found that increased patient satisfaction scores were associated with higher health care expenditures and even increased mortality.

Of course, I’m not arguing against patient autonomy or patient satisfaction. People ought to have a voice in their healthcare. But attributing excessive importance to patient satisfaction scores stymies medicine and encourages confusion among patients who don’t necessarily know what is and isn’t medically appropriate, thus putting them at risk. This is borne out in the story of our pseudoseizing patient, and in the data from studies. If we, as physicians, merely do what the patient asks of us, we are no longer practicing medicine; we are technicians for hire, something I pointed out in a previous post on the purpose of medicine. Evidently, then, the push for patient autonomy can hurt both patients and doctors.

Indeed, the solution is not to incentivize the physician to give the patient what he or she wants. Nor is it to force the patient to do only what the physician demands. What we need is balance. As suggested in a 1996 article in the Annals of Internal Medicine, what we need is not a consumer model but a model that promotes “an intense collaboration between patient and physician so that patients can autonomously make choices that are informed by both the medical facts and the physician’s experience.” Doctors don’t have a monopoly on medical truth but they have years of education and experience and they must help patients to make a reasoned choice.

Physicians need to provide patients with information, evidence, and guidance. They need to negotiate with patients, just as patients need to negotiate with doctors. And sometimes physicians need to draw a hard line. If a doctor encounters a patient who demands something a physician is not comfortable with or if the “chosen course violates the physician’s fundamental values” despite negotiations and conversations, “he should inform the patient of that fact and perhaps help the patient find another physician.”

Yes, final choices belong to patients and not doctors. But both must invest a lot in order to allow patients to make informed decisions. We should not let the mistaken primacy of satisfaction surveys and radical autonomy obstruct this negotiation — there is more at stake for all of us than just an extraneous MRI.

Tuesday, September 15, 2015

CPR in the Hospital, Part 2

With what strife and pains we come into the world we know not, but ’tis commonly no easy matter to get out of it.
—Sir Thomas Browne, Religio Medici

I wasn’t the first to arrive in her room. The resident had already started the code, and nurses, physicians, and medical students crowded around her bed, performing CPR. The patient, a woman in her sixties, bore the physical scars of many life-saving interventions for deadly issues ranging from heart attacks to strokes to blood clots in her lungs. Six different IV bags with medications hung on poles on either side of her bed. A tube stuck out from her neck and was connected to a breathing machine. Otolaryngologists (specialists in conditions of the nose, ear, and throat) created a tracheotomy for her months ago, cutting an opening through her neck because she could not breathe properly through her mouth.

This was all I knew when I walked up to her bed, where ten physicians and nurses ran through the protocol necessary for restarting the patient’s heart. In addition to defibrillation to shock the heart back into rhythm, physicians give epinephrine to augment the effects of CPR. Epinephrine raises blood pressure by constricting blood vessels, thus increasing the flow of blood into the brain and the heart. And, it binds to beta-1 receptors in the heart, improving the heart’s ability to contract.

A well-run protocol, or code, has a rhythm: Epinephrine is given every 3 to 5 minutes, chest compressions are performed thirty times for every two breaths, the heart is shocked at the stop of compressions, and then we start over from the beginning. If there is a competent leader, then despite the chaos of human bodies crowding around the spectacle of death, opening drawers for medications, and thumping on the patient’s chest, there is still order, a pattern, a method, a purpose.

Wikimedia Commons
When the resident doing chest compressions tired out, she shoved me to take her place the next time around. Chest compressions are intense, both emotionally and physically, and one tires easily. So we cycle in and out — we compress for as long as our bodies allow and then make way for a colleague who is next in line. I stepped up and began my compressions. The compressor must replicate the beat of the patient’s heart. If you go too fast, the heart does not have time to fill and you don’t pump blood to the brain; too slow, and the brain is deprived of oxygen and your compressions are useless.

The patient’s eyes looked up at me as I pounded my palms onto her sternum rhythmically and her whole body shook. Still open, a thin glassy film covered her eyes, clouding the stuff of life that normally emanates from a human’s gaze. Feeling uneasy as the object of her empty stare, I looked up at the TV: two pop singers were apparently at war on Twitter.

At some point — I can’t remember how early or late in the process this occurred — the patient seemed to gasp for air. She growled and gurgled, desperately reaching for the elemental gas which we take for granted every time we inhale. This may have been her agonal breathing, a process that some experience on their way to death. The late Dr. Sherwin Nuland, a surgeon and writer, described this in his book How We Die: “The adjective agonal is used by clinicians to describe the visible events that take place when life is in the act of extricating itself from protoplasm too compromised to sustain it any longer.” He continues,

The apparent struggles of the agonal moments are like some violent outburst of protest arising deep in the primitive unconscious, raging against the too-hasty departure of the spirit; no matter its preparation by even months of antecedent illness, the body often seems reluctant to agree to the divorce. In the ultimate agonal moments, the rapid onset of final oblivion is accompanied by the cessation of breathing or by a short series of great heaving gasps.... (p. 122)
 
Indeed, this is what the patient seemed to be experiencing. But was it? One resident tore open a drawer, found a thin, long, hollow tube and connected it to the suction machine on the wall. Perhaps, he theorized, the patient had a mucus plug in her airway. In patients with tracheotomies, the air bypasses the mouth which normally cleans and moistens the air we breathe. In response, the patient’s body produces more mucus, which accumulates and blocks the flow of oxygen into the lungs. This could be an easily reversible cause of the patient’s sudden deterioration.

The resident pushed the suctioning tube into the patient’s trachea while a nurse called the otolaryngologists who had placed the tracheotomy and were better trained to deal with it. The resident retrieved small bits of mucus out of the patient’s airway, but we still needed to continue CPR. Eventually, after many attempts to revive the patient, the attending physician looked at the clock and, realizing it had been 25 minutes since the code started, asked: “Does anyone have any other ideas as to how we can save this patient?” Met with silence, he nearly declared the time of death to be 3:32 in the afternoon. But the otolaryngologist shouted that he had finally gotten something. A long, viscous, and yellow-brown piece of mucus shot up into the suction tube and the patient gasped for air. Her heart began to beat appropriately again; her respirations normalized. Within five minutes she was back to her old self again, sick, yet alive and aware, conversant via hand motions and mouthing of words. She could now let us know that she existed. The glassy film retreated from her eyes as she was pulled back from death.

This is an uncommon circumstance. In a study in The New England Journal of Medicine in 2009, researchers studied Medicare patients 65 years of age or older who underwent CPR in U.S. hospitals from 1992 through 2005. They found that only 18.3 percent of these patients survived to discharge. Over the course of this time “the proportion of in-hospital deaths preceded by CPR increased, whereas the proportion of survivors discharged home after undergoing CPR decreased.” It seems that CPR has not gotten better, and the authors express “significant concern” that CPR has increased “during a time of more education and awareness about the limits of CPR in patients with advanced chronic illness and life-threatening acute disease,” like the patient we revived.

And yet, who can argue with the results that day? I wrote in my last post on CPR that “we rightfully value human life above all else and thus owe the patient every weapon in this battle. While the rapidity of the process may seem callous, it is essential in a last-ditch effort to stave off eternal rest. After all, what if she had been revived?” In this patient’s case she was fortunate. Yes, she was still critically ill, but perhaps this gave her more time to be with her husband, who had been visiting her for months. Maybe now she could have the conversations with her family about whether she wanted CPR done in the future if her condition worsened (she and her husband eventually decided they didn’t want any further CPR measures — this one experience was traumatic enough). Alternatively, perhaps this revival would change nothing about how she would use her time on this earth. It is not for physicians to say how she ought to use her new-found days; it is only for physicians, when appropriate, to help her grasp them.

Monday, August 10, 2015

A Tour of the Intensive Care Unit (ICU)

I have a rendezvous with Death
At some disputed barricade,
When Spring comes back with rustling shade
And apple-blossoms fill the air—
I have a rendezvous with Death
When Spring brings back blue days and fair.

It may be he shall take my hand
And lead me into his dark land
And close my eyes and quench my breath—
It may be I shall pass him still.
I have a rendezvous with Death
On some scarred slope of battered hill,
When Spring comes round again this year
And the first meadow-flowers appear.

God knows 'twere better to be deep
Pillowed in silk and scented down,
Where Love throbs out in blissful sleep,
Pulse nigh to pulse, and breath to breath,
Where hushed awakenings are dear ...
But I've a rendezvous with Death
At midnight in some flaming town,
When Spring trips north again this year,
And I to my pledged word am true,
I shall not fail that rendezvous.

—Alan Seeger, I Have a Rendezvous with Death

The Intensive Care Unit is an uncomfortable place. It is where the sickest patients in the hospital reside. Because many of the patients require emergency medical interventions or close monitoring, the layout resembles that of the emergency department (ED). Patient rooms encircle a nurse’s station where computers sit on a long table. As in the ED, each room is filled with machines projecting vital signs, EKG tracings, IV fluid rates, and other information towards the physicians and nurses. And the nurses in “the unit” (as it’s commonly referred to) are always active, checking in on patients throughout the day and night.

There are many different types of intensive care units: some for patients with heart issues (cardiac ICU), others for patients with neurological issues (neuro ICU), pulmonary or general medical issues (medical ICU), surgical issues (surgical ICU) and cancers (oncology ICU). What we see in each unit, however, is equally disturbing. And what follows are the some of the things one might see (and which I have seen) in different ICUs over the course of a day.

Image via Shutterstock
In the neuro critical care unit, one patient lies unconscious with a massive and deadly brain bleed. In another bed across the room, a patient with a rapidly expanding brain tumor cries out in searing pain from a headache. In the cardiac intensive care unit, a patient, hours after receiving a ventricular assist device (VAD), a device which helps the heart’s ventricles pump out blood after being weakened by disease, receives chest compressions from a nurse as he goes into cardiac arrest. Another unconscious patient in the far corner of the room is on ECMO, or extracorporeal membrane oxygenation, after having massive heart and lung failure. ECMO takes blood out of the venous system, oxygenates it in a machine and then pumps it back into the arterial system, thus bypassing the heart and the lungs. In the normal circulatory system, blood goes from the veins into the right side of the heart and subsequently to the lungs where it is oxygenated, flows to the left side of the heart and is pumped into circulation to nourish the body’s tissues. ECMO temporarily maintains circulation until the patient’s heart and lungs can function on their own.

In the oncology unit, a middle-aged cachetic patient lies face-up in the bed, staring at the ceiling while fungal and bacterial infections cause his blood pressure to drop and heart rate to increase. Despite the medications used to prevent these infections in cancer patients with very low white blood cell counts, sometimes the microbes sneak by. And because chemotherapy used to treat cancer destroys white blood cells, the cancer patient has nothing left with which to fight off the infection. Even the most minor bacterial invasion can be fatal for these patients, as it eventually was for him. Meanwhile, in the next room, another patient had just passed away and her family crowded around her bed sobbing and mourning their loss while holding the expired patient’s hand, hoping for the return of warmth.

Unusual sounds percolate from room to room in these dank areas of the hospital. Most noticeably, IV poles beep constantly as they run out of their fluids or medications. Cardiac monitors sound alarms as patient heart rates dip too low, rise above a normal level, or register abnormal rhythms. Some patients moan and scream, losing all sense of time and of themselves. Or, perhaps they curse and threaten nurses while withdrawing from alcohol. Others vomit and pass gas. Some patients demand the impossible: “get me out of here!” or “leave me alone!” Sometimes patients need to be strapped down to the bed because they pull out their IVs as they wail and moan and thrash about. During the day, minimal light shines into the unit and it is tainted by the sickness and suffering which pollute the air and tint the windows. Foul smells, which I wrote about here, are most potent in the ICU. Many ICU patients, though washed by nurses, have not bathed in weeks. The stench of sweat, stool, and blood permeates the unit when nurses change patients’ diapers, suck accumulating mucous out of patients’ mouths, and clean up blood-stained sheets.

And if you think it’s bad for providers, imagine what patients experience. The ICU must feel like a kind of hell on earth. Sleep is rare when your neighbors expectorate, choke, vomit, and shout, and nurses and physicians constantly wake you up, draw blood from your veins, and examine you to ensure your mind still functions correctly. Some patients can’t eat or drink because they need surgery (it is safer to put patients under anesthesia for surgery when they have not eaten because food will not come up from the stomach and choke the patient or travel into the lungs while they are unconscious) and so they go to bed hungry and thirsty. A patient may even go to sleep not knowing whether he or she will wake in the morning. You may be one of those who has a rendezvous with death tomorrow; you may be one of those who survives; you may hang on by a thread for weeks. Who would ever want to end up in an ICU?

And yet, it is in the ICU that patients receive the most fastidious care. Nurses watch over only one or two patients and thus can keep a close eye on them. Physicians trained in the art of emergency procedures, like intubation, are always around and watchful. Nobody will be more attentive to your medical needs than an ICU team, which monitors every sign of life you emit: breaths, heartbeats, skin color, blood pressure, electrolyte levels, blood counts, infectious disease cultures from your urine to your spinal fluid. The advantage of being in the ICU is that you receive the care that you need even if it is in a frightening environment. I hope I never have to be there, but if I am severely ill at some point in my life, the ICU is the place I would choose to be.

Tuesday, July 28, 2015

Vaccines and Their Critics


This year we witnessed a lot of contentious debate in newspapers and on television shows about the safety and efficacy of vaccines. Recently, for example, the actor and anti-vaccine activist Jim Carrey spoke out against a new law in California that eliminates personal-belief exemptions from mandatory vaccination. Carrey tweeted: “California Gov says yes to poisoning more children with mercury and aluminum in manditory [sic] vaccines. This corporate fascist must be stopped.” Carrey received Twitter support from other celebrities including Kirstie Alley, Selma Blair, and Erin Brockovich. Meanwhile, a woman from Washington state died of measles in June, reportedly the first measles death in the United States in a dozen years. And, in Seattle, only 81 percent of kindergarten students have been vaccinated against the polio virus, a rate “lower than the 2013 polio immunization rates for 1-year-olds in Zimbabwe, Rwanda, Algeria, El Salvador, Guyana, Sudan, Iran, Kyrgyzstan, Mongolia and Yemen, among other countries.”

In a 2014 post on this blog, I told the story of a child in the hospital who nearly died from whooping cough. I pointed out that vaccine critics today make similar objections to vaccine critics from the eighteenth and nineteenth centuries. But why has this criticism persisted such that outposts of communities still refuse to vaccinate their children? Why does the vaccine controversy continue to resurface?

I have since followed up on this subject with a full-length essay in The New Atlantis, now available online: “Vaccines and Their Critics, Then and Now.” If you’re at all interested in the topic, or if you’re interested in history and public health policy, this piece worth your time. I argue that vaccine criticism has a long and robust history. And historical vaccine criticisms repeat themselves today, though they are voiced by new anti-vaccinationists and shaped by cultural trends like feminism, environmentalism, and radical patient autonomy.

What exactly do these critics say? And how do we confront such a persistent and unyielding group of arguments? It’s all there in the essay. Here is a taste:

It is true that high vaccination rates are important for public health, and when people make false claims about the dangers of vaccines it is the responsibility of scientists, journalists, and politicians to criticize and refute them. But calls to ostracize and ridicule vaccine critics may be as likely to harden hearts as they are to persuade. For example, in a recent article in the journal Pediatrics, researchers studying the effects of different communication strategies reported, somewhat counterintuitively, that giving vaccine-hesitant parents more information about the safety of vaccines, or telling them about the risks of vaccine-preventable disease, whether through scientific information, dramatic narratives, or arresting images, were not effective at persuading them to vaccinate their children. And yet, another recent study in Pediatrics suggests that parents are less likely to vaccinate their children if physicians ask them what they want to do about vaccinations (as opposed to taking a presumptive approach and asserting that the children will receive their shots).

Given this impasse, where ought we to turn? Perhaps what is needed is a better understanding of the long history of vaccine critics’ objections, going back to the very origins of vaccination. This will help us not to bemoan, accuse, or fight but to educate, persuade, and vaccinate.

The whole essay is online here.
Image via Shutterstock

Tuesday, June 23, 2015

The Purpose of Medicine

American medicine is not well. Though it remains the most widely respected of professions, though it has never been more competent technically, it is in trouble, both from without and from within.
—Dr. Leon R. Kass

As a newly minted medical school graduate, I am suddenly faced with much more responsibility. Now I must write prescriptions for patients, write notes on patients, and know what to do during an emergency. It is all very daunting. While anxious and excited about these new responsibilities, I am also confused about what I’m doing it all for.

I don’t mean that I’m confused about why I chose medicine. True, medical school was incredibly difficult, but there will be many rewards down the road. I mean to ask: What is the purpose of medicine? It is queer that one should spend four years learning medicine and not know one’s purpose. But no one ever discussed this question in medical school. Now, after graduation, the question’s importance is suddenly apparent. My future actions depend on the answer to it.

Some answers are implied during our schooling. The purpose of medicine that seems obvious is to cure the patient of disease. After all, this is why patients come to the doctor. But sometimes, we also attempt to make people happy. I’ve seen patients receive IV fluids because it will “make them feel like they’re getting treatment.” I’ve seen children receive antibiotics even when they didn’t need them, simply because the parents wanted something done for their children. I’ve also seen a patient receive a “therapeutic” EKG — his chest hurt and despite the fact that there was no way he was having a heart attack, he received an EKG to “calm him down.” The goals of medicine, according to my own limited experience then, are at least twofold: the elimination of disease and, more broadly, patient satisfaction even when it has nothing to do with disease.

Dr. Leon Kass, a teacher and bioethicist trained as a physician (and a New Atlantis contributor), wrote about the purpose of medicine in the 1975 essay “Regarding the End of Medicine and the Pursuit of Health” in The Public Interest (available here as a PDF). Though written forty years ago this summer, the essay is as relevant and necessary as ever. I’ll highlight some of Kass’s major points to help us think through my question about medicine’s purpose.

The fact that the purpose of the medical profession is not often considered is, Kass points out, deeply troubling. Indeed, without an answer to the question, Kass writes, “medicine is at risk of becoming merely a set of powerful means, and the doctor at risk of becoming merely a technician and engineer of the body, a scalpel for hire, selling his services upon demand.” This would spell the end of medicine, Kass believes — “there will be an end to medicine unless there remains an end for medicine.”

Kass proceeds to tackle the issue by critiquing some of the goals of medicine that people sometimes assume. Happiness, he argues, should not be the purpose of medicine. Kass offers some examples of physicians attempting to make patients happy: a surgeon might remove a woman’s breast so she can improve her golf swing, or a family physician might administer amphetamine injections to people who want to feel good. These interventions are aimed solely at gratification and thus are not even concerned with pathology.

Even the prolongation of life or the prevention of death per se should not be the goal of medicine, Kass argues. This, perhaps, is difficult for us to understand. Indeed, doctors daily witness death and terminal illness. If we know CPR, do we withhold it because it’s not our job to prevent death or prolong life? Not at all, but if we believe that the goal of medicine is the prevention of death, then the logical endpoint of this must be “bodily immortality.” Kass observes that “to be alive and to be healthy are not the same, though the first is both a condition of the second, and, up to a point, a consequence.”

Anyone’s life can be prolonged now. Machines breathe for patients. Machines oxygenate patients’ blood. Machines pump blood into the circulatory system. All this occurs regularly in the intensive care unit. But if physicians put patients on these machines indefinitely solely to keep blood flowing through arteries regardless of the patient’s condition, the mere preservation of life, and by extension the job of medicine, is meaningless.

The goal of medicine, according to Kass, is the preservation of health. The word “health” in English means “wholeness.” It is derived from the Old English hal, which is also the origin of “whole.” For Kass “wholeness” involves a “fully formed mature organism ... composed of parts. It is a structure and not a heap.” Additionally, wholeness includes the “working-well of the work done” by a person’s body. Thus, health consists of a proper balance of parts that make up the whole and the workings of the whole human being. In order to demonstrate his point, Kass takes the example of a squirrel. A healthy squirrel is not just a squirrel with a normal digestive tract, it is a squirrel who acts and looks like a squirrel. It leaps from tree to tree, runs, gathers, and buries. All of these characteristics tell us that this is a fully-functioning, whole squirrel—a healthy squirrel. Similarly, a healthy human being acts and looks like a human being. While this concept may seem vague, Kass’s point is well-taken; a healthy human is “recognizable if not definable.”

A good example of preserving health is the well-child visit in a pediatrician’s office, where physicians check for normal growth and development. This demonstrates that “health is a good in its own right, not merely a privation of one or all evils.” In other words, pediatricians don’t just see children who are sick (though they do that, too); they also see children who are healthy. And in doing so they help make sure that these children remain healthy. Family medicine physicians do something similar with adults. They see their patients on a regular basis to ensure that patients are exercising, eating right, and have no abnormal blood counts or cholesterol numbers, and that they are otherwise doing well.

Check-ups like these are as important as giving a patient antibiotics for pneumonia. Medicine involves figuring out how to maintain the excellent functioning of a human being. It necessarily includes what today we call preventive medicine: vaccines, cessation of smoking, a healthy diet, an active lifestyle. This view of medicine necessarily involves the patient as a partner to the physician: both work together to help maintain the health of the patient.

Many of the things we expect from medicine today do not fall under Kass’s definition of health. The injection of Botox to make one look younger, for example, does not involve health in any way whatsoever. Having wrinkles in one’s face does not affect the excellent functioning of a person. Endocrinologists, plastic surgeons, psychiatrists, and many other specialists and generalists all deal with patients who request the kinds of procedures that go beyond health. Whether these procedures ought to be available is a completely separate question from whether these services fall under the purview of the physician. If physicians perform them for patients, then physicians, I think, become service providers to the highest bidder. They become technicians at the whim of patients. (Kass addressed some of these same themes about the difference between therapy and enhancement in his 2003 New Atlantis essay “Ageless Bodies, Happy Souls.”)

To be sure, Kass’s 1975 essay does not go into the kind of detailed, philosophical argument that we might hope for. Kass himself admits this when he writes, “large questions still remain” and “I am not seeking a precise definition of health.” But he gives us a basic and firm outline of the purpose of medicine and we would be remiss if we didn’t study this purpose carefully. Without a purpose, medicine lacks moral certainty or a soul. None of us, within medicine or without, can afford that.

Tuesday, June 2, 2015

Empathy in Medicine

“You’ll h-h-h-have to... excuse m-m-m-me. I’m a little slow because I had a stroooooke,” he told us before we explained to him what his wife’s treatment would be. His voice was nasal and his speech deliberate as he slowly and poorly enunciated each word. He wore sweatpants and a long-sleeved shirt with a blue and white hat pulled down over his eyes. Stubbornly refusing to stay tucked away, gray hairs peeked out the sides of his chapeau and covered his ears. He looked to be in his seventies. His wife lay on the bed in a hospital gown, slippers still on. She wore a winter hat that concealed a bald scalp, one of the many side effects of potent cancer medications. Her eyebrows were gone and her sinewy frame was exaggerated as cachexia set in. She needed extra rounds of chemotherapy for metastatic cancer.

Image via Flickr: Tim Hamilton (CC)
That afternoon, I ran into the husband in the hospital lobby. He had just bought food and was going to bring it back to his wife, but he was heading the wrong way. He asked a fellow student and me (he recognized both of us) how he could get back to his wife’s room and we pointed him in the right direction. We watched him shuffle towards his wife in the cancer ward. This couple was neither wealthy nor well-educated; they were suffering and attempting to navigate the healthcare system as well as the overwhelming size of an academic hospital. They seemed helpless together.

It’s in such moments, as in many others, when empathy wells up in medical practice. I could clearly imagine myself or my family members in their position. Their emotions became all too familiar and upsetting to me. I wanted to do everything in my power to help them and to fix their situation. But this strong sense of identification seemed odd given how brief my interaction with them had been.

In reality, however, such a feeling is not so unusual. Robert Louis Stevenson, the famous nineteenth-century Scottish writer, co-authored a short story called The Ebb-Tide. It is an account of three criminals who steal a ship and the deeply troubling moral situation they subsequently encounter. When one of them falls sick, Stevenson describes the healthy comrades’ feelings:

A profound commiseration filled them, and contended with and conquered their abhorrence. The disgust attendant on so ugly a sickness magnified this dislike; at the same time, and with more than compensating strength, shame for a sentiment so inhuman bound them the more straitly to his service; and even the evil they knew of him swelled their solicitude, for the thought of death is always the least supportable when it draws near to the merely sensual and selfish.
Image via Shutterstock

Given the power of this selfless commiseration shouldn’t we cultivate it in medicine? No doubt it will help us to act altruistically even when we see the worst in patients or colleagues, thus leading to a better bedside manner and better patient care. Jean-Jacques Rousseau, the Genevan philosopher, saw such feelings differently, however. In Emile, or On Education, Rousseau points out that empathy is really an outlet for selfish passions, even if its effects can be positive. Rousseau writes that,

if the enthusiasm of an overflowing heart identifies me with my fellow-creature, if I feel, so to speak, that I will not let him suffer lest I should suffer too, I care for him because I care for myself, and the reason of the precept is found in nature herself, which inspires me with the desire for my own welfare wherever I may be.
Such cynicism about the underlying nature of empathy still has its advocates today. In the September 2014 Boston Review, Yale psychology professor Paul Bloom questions our high regard for empathy. I recommend reading his essay and his exchange with other scholars, including Peter Singer, Sam Harris, and Leslie Jamison. Bloom points out the dangers of unchecked empathy: “Strong inclination toward empathy comes with costs. Individuals scoring high in unmitigated communion report asymmetrical relationships, where they support others but don’t get support themselves. They also are more prone to suffer depression and anxiety.” And this is especially the case, Bloom points out, in the medical field in which a doctor can lose a sense of objectivity and a cool head in an emergency. Bloom distinguishes between cognitive empathy, which is empathy tempered by rational feeling, and emotional empathy, which can be dangerous. Bloom writes of an older relative of his in the hospital:

He values doctors who take the time to listen to him and develop an understanding of his situation; he benefits from this sort of cognitive empathy. But emotional empathy is more complicated. He gets the most from doctors who don’t feel as he does, who are calm when he is anxious, confident when he is uncertain. And he particularly appreciates certain virtues that have little directly to do with empathy, virtues such as competence, honesty, professionalism, and respect.

This makes sense. I can imagine how exhausting it must be to feel so strongly about every patient. It would cause burnout and depression. But the psychologists Lynn O’Connor and Jack Berry respond to Bloom in the following way: “We can’t feel compassion without first feeling emotional empathy. Indeed compassion is the extension of emotional empathy by means of cognitive processes. Only if we have the capacity to feel empathy toward loved ones can this sentiment be generalized by the imagination and extended to strangers.” This addition to Bloom’s argument is absolutely vital. Both types of empathy are important.

Such balanced empathy keeps the physician honest. There are many times when, in a rush to complete the work of the day or under the pressure to see every patient, physicians take their frustrations out on patients. Empathy tames our impulsivity and gives us pause. It forces us to consider the actions we are about to take. And we can project empathy using reason and emotion. If an elderly woman is being difficult, instead of reacting with frustration and annoyance we can step back and ask ourselves, “What if is this were my grandmother or my mother? How would I want her physician to behave?” To do this is not easy, but it can make an immense difference in how one interacts with a patient.

Empathy may or may not spring from selfishness, and too much of one aspect of it (like too much of any emotion) can be a bad thing. But physicians do need empathy, both the emotional empathy that we feel towards some and the cognitive empathy that we can extend toward all. In the cogs of an impersonal medical system, it leads to the dignified treatment of a suffering patient.