Monday, September 26, 2016

Should Computers Replace Physicians?

In 2012, at the Health Innovation Summit in San Francisco, Vinod Khosla, Sun Microsystems co-founder and venture capitalist, declared: “Health care is like witchcraft and just based on tradition.” Biased and fallible physicians, he continued, don’t use enough science or data — and thus machines will someday rightly replace 80 percent of doctors. Earlier that same year, Khosla had penned an article for TechCrunch in which he had made a similar point. With the capacity to store and analyze every single biological detail, computers would soon outperform human doctors. He writes, “there are three thousand or more metabolic pathways, I was once told, in the human body and they impact each other in very complex ways. These tasks are perfect for a computer to model as ‘systems biology’ researchers are trying to do.” In Khosla’s vision of the future, by around 2022 he expects he will “be able to ask Siri’s great great grandchild (Version 9.0?) for an opinion far more accurate than the one I get today from the average physician.” In May 2014, Khosla reiterated his assertion that computers will replace most doctors. “Humans are not good when 500 variables affect a disease. We can handle three to five to seven, maybe,” he said. “We are guided too much by opinions, not by statistical science.”

The dream of replacing doctors with advanced artificial intelligence is unsurprising, as talk of robots replacing human workers in various fields — from eldercare to taxi driving — has become common. But is Vinod Khosla right about medicine? Will we soon walk into clinics and be seen by robot diagnosticians who will cull our health information, evaluate our symptoms, and prescribe a treatment? Whether or not the technology will exist is difficult to predict, but we are certainly on our way there. The IBM supercomputer Watson is already being used in some hospitals to help diagnose cancer and recommend treatment, which it does by sifting through millions of patient records and producing treatment options based on previous outcomes. Analysts at Memorial Sloan Kettering Cancer Center are training Watson “to extract and interpret physician notes, lab results, and clinical research.” All this is awe-inspiring. Let us generously assume, then, for a moment, that the technology for Khosla’s future will be available and that all knowledge about and treatment options for medical problems will be readily analyzable by a computer within the next decade or so. If this is the future, why shouldn’t physicians be replaced?

There are several errors in Khosla’s way of thinking about this issue. First of all, modern health care is not “like witchcraft.” Academic physicians, for example, use evidence-based medicine whenever it is available. And when it isn’t, then they try to reason through a problem using what biologists know about disease presentation, physiology, and pharmacology.

Moreover, Khosla mischaracterizes the doctor-patient interaction. For Khosla, a visit to the doctor involves “friendly banter” and questions about symptoms. The doctor then assesses these symptoms, “hunts around ... for clues as to their source, provides the diagnosis, writes a prescription, and sends you off.” In Khosla’s estimation the entire visit “should take no more than 15 minutes and usually takes probably less than that.” But the kind of visit Khosla writes about is an urgent care visit wherein quick and minor issues are addressed: strep throat or a small laceration requiring a stitch or two. Yes, these visits can take fifteen minutes, but so much of medicine does not involve these brief interactions. Consider the diabetic patient who has poorly controlled blood sugars, putting her at risk for stroke, heart attack, peripheral nerve destruction, and kidney failure, but who hasn’t been taking her medications. Or consider a patient addicted to cigarettes or on the verge of alcoholism. Consider the patient with Parkinson’s disease who wonders how this new diagnosis will affect his life. And what about the worried parents who want antibiotics for their child even though their child has a viral infection and not a bacterial infection? I can go on and on with scenarios like these, which occur hourly, if not daily, in nearly every medical specialty. In fact, fifteen-minute visits are the exception to the kind of medicine most physicians need to practice. One cannot convince an alcoholic to give up alcohol, get a diabetic patient to take her medications, or teach a Spanish-speaking patient to take his pills correctly in fifteen minutes. In addition, all this is impossible without “friendly banter.”

As Dr. Danielle Ofri, an associate professor of medicine at the New York University School of Medicine, wrote in a New York Times blog post, compliance with blood pressure medications or diabetic medications is extremely difficult, involving multiple factors:

Besides obtaining five prescriptions and getting to the pharmacy to fill them (and that’s assuming no hassles with the insurance company, and that the patient actually has insurance), the patient would also be expected to cut down on salt and fat at each meal, exercise three or four times per week, make it to doctors’ appointments, get blood tests before each appointment, check blood sugar, get flu shots — on top of remembering to take the morning pills and then the evening pills each and every day.
Added up, that’s more than 3,000 behaviors to attend to, each year, to be truly adherent to all of the doctor’s recommendations.

Because of the difficulties involved in getting a patient to comply with a complex treatment plan, Dr. John Steiner argues in an article in the Annals of Internal Medicine that in order to be effective we must address individual, social, and environmental factors:

Counseling with a trusted clinician needs to be complemented by outreach interventions and removal of structural and organizational barriers. ...[F]ront-line clinicians, interdisciplinary teams, organizational leaders, and policymakers will need to coordinate efforts in ways that exemplify the underlying principles of health care reform.

Therefore, the interaction between physician and patient cannot be dispensed with in fifteen minutes. No, the relationship involves, at minimum, a negotiation between what the doctor thinks is right and what the patient is capable of and wants. To use the example of the diabetic patient, perhaps the first step is to get the patient to give up soda for water, which will help lower blood sugars, or to start walking instead of driving, or taking the stairs instead of the elevator. We make small suggestions and patients make small compromises in order to change for the better — a negotiation that helps patients improve in a way that is admittedly slow, but necessarily slow. This requires the kind of give-and-take that we naturally have in relationships with other people, but not with computers.

This kind of interaction also necessitates trust — trust regarding illicit drugs, alcohol, tobacco, and sexual activity, all of which can contribute to or cause certain medical problems. And a computer may ask the questions but cannot earn a patient’s confidence. After all, these kinds of secrets can only be exchanged between two human beings. David Eagleman, a neuroscientist at the Baylor College of Medicine, writes in his book Incognito that when we reveal a secret, we almost always feel that “the receiver of the secrets has to be human.” He wonders why, for example, “telling a wall, a lizard or a goat your secrets is much less satisfying.” As patients, we long for that human reception and understanding that a physician can provide and use to our advantage in coming up with a diagnosis.

Khosla neglects other elements of medical care, too. Implicit in his comments is the idea that the patient is a consumer and the doctor a salesman. In this setting, the patient buys health in the same way that he or she buys corn on the cob. One doesn’t need friendly banter or a packet of paperwork to get the best corn, only a short visit to the grocery store.

And yet, issues of health are far more serious than buying produce. Let’s take the example of a mother who brings her child in for ADHD medication, a scenario I’ve seen multiple times. “My child has ADHD,” she says. “He needs Ritalin to help his symptoms.” In a consumer-provider scenario, the doctor gives the mother Ritalin. This is what she wants; she is paying for the visit; the customer is king. But someone must explain to the mother what ADHD is and whether her child actually has this disorder. There must be a conversation about the diagnosis, the medication, and its side effects, because the consequences of these are lifelong. Machines would have to be more than just clerks. In many instances, they would have to convince the parent that, perhaps, her child does not have ADHD; that she should hold off on medications and schedule a follow-up to see how the child is doing. Because the exchange of goods in medicine is so unique, consequential, and rife with emotion, it is not just a consumer-cashier relationship. Thus computers, no matter how efficient, are ill-fitted to this task.

Khosla also misunderstands certain treatments, which are directly based on human interactions. Take psychiatry for example. We know that cognitive behavioral therapy and medication combined are the best treatment for a disease like depression. And cognitive behavioral therapy has at its core the relationship between the psychiatrist or therapist and the patient, who together work through a depressed patient’s illness during therapy sessions. In cognitive behavioral therapy, private aspects of life are discussed and comfort is offered — human expressions and emotions are critical for this mode of treatment.


To be sure, Khosla is right about quite a lot. Yes, technology ought to make certain aspects of the patient visit more efficient. Our vital signs may one day easily be taken with the help of our mobile phones, as he suggests, which would save time checking in to a clinic and could help give physicians constant and accurate measurements of blood pressure in hypertensive patients or EKG recordings in patients with heart disease. Technology of this sort could also indicate when an emergency is happening or how a patient ought to alter medication doses.

Furthermore, Khosla correctly identifies some of the limitations of human physicians: “We cannot expect our doctor to be able to remember everything from medical school twenty years ago or memorize the whole Physicians Desk Reference (PDR) and to know everything from the latest research, and so on and so forth.” True, the amount of information accumulated by modern medical research is beyond the capability of any human being to know, and doctors do make mistakes because they forget or are not up on the latest research. In a 2002 study in the Journal of Neurology, Neurosurgery and Psychiatry, investigators found that 15 percent of patients with a diagnosis of Parkinson’s disease do not necessarily fulfill criteria for the disease and 20 percent of patients with Parkinson’s disease who have already seen medical providers have not been diagnosed. These are large percentages that have profound implications for people’s lives. And this is exactly why physicians must use technologies like Watson to do a better job, not necessarily abdicate the job altogether. Most of us already carry smartphones or tablets on rounds, to look up disease processes or confirm our choice of antibiotic.

Lastly, Khosla wisely points out that physician bias can negatively affect a patient’s treatment. As he writes, “a physician’s bias makes all these personal decisions for patients in a majority of the cases without the patient (or sometimes even the physician) realizing what ‘preferences’ are being incorporated into their recommendations. The situation gets worse the less educated or economically less well-off the patient is, such as in developing countries, in my estimation.” Undoubtedly, this dilemma is real. I have spent many of my posts on this blog writing about the issue of remaining unbiased or level-headed in the face of difficult patient interactions. A study published in Obesity in 2013 found that physicians “demonstrated less emotional rapport with overweight and obese patients ... than for normal weight patients,” which may “weaken the patient-physician relationship, diminish patients’ adherence to recommendations, and decrease the effectiveness of behavior change counseling.” And as Tara Parker-Pope remarks in the New York Times, “studies show that patients are far more likely to follow a doctor’s advice and to have a better health outcome when they believe their doctor empathizes with their plight.” If bias exists in lieu of empathy, it makes sense that patients have worse outcomes. What makes doctors most valuable, their humanity, can have negative consequences.

But people can learn from studies, alter their behavior, and remain human. Computers or robots can learn from studies and alter their behavior, but they will always be robots. They will never earn the trust of the chronically ill drug addict. They will never be able to negotiate with the most difficult patients who demand specific treatments but may not be entirely sure why. An ideal system would not be one built solely on fallible human doctors but one in which new tools significantly augment human physicians’ skill and knowledge. A measured combination of these will put all the information at a doctor’s fingertips while keeping the art of medicine alive.

Wednesday, September 14, 2016

Revisiting The House of God

Dr. Stephen Bergman, a psychiatrist, published his now-famous satirical novel The House of God under the pseudonym Samuel Shem in August 1978. The book’s protagonist, a young intern, describes the emotional and physical difficulties during the first year of residency. With more than two million copies sold, the work is something of a classic within the medical profession.

Even in medical school, before we started our clinical rotations during our third year, some of my friends and professors recommended I read the novel, so I borrowed it from a fellow student. I enjoyed it but couldn’t fully identify with the characters in the story, which dealt with the hardships of residency: terrible hours, unsympathetic attending physicians, obstreperous and ornery patients, horrible deaths, and flailing personal relationships outside of the hospital because of the amount of time spent inside it. As a student, I hadn’t yet seen these things and from the outside this all seemed unrealistic: How, I asked myself, could this even be close to the reality of a modern academic hospital?

Now that I am through my third and fourth years of medical school as well as my first year of residency I have re-read the book, and I thought it would be interesting to reconsider my initial impression. Indeed, the novel is so much more relevant to me now. In order to illustrate this, it is worth looking at just a few passages.

I got more and more tired, more and more caught up in the multitudinous bowel runs and lab tests. The jackhammers of the Wing of Zock had been wiggling my ossicles for twelve hours. I hadn’t had time for breakfast, lunch, or dinner, and there was still more work to do. I hadn’t even had time for the toilet, for each time I’d gone in, the grim beeper had routed me out. I felt discouraged, worn. (p. 41)

Though slightly hyperbolic, all this is scarily familiar to me. On some days there is so much work to do that one doesn’t really have time to sit down and eat. Or, when one does finally have a spare moment (after 6 or 7 hours of running around), animal instincts take over and without being cognizant of it one ravenously attacks any food available. Some of us stick granola bars in our white coat pockets to prevent this sudden and unfettered hunger attack but even this is just enough to make us want more. Occasionally, the issue is that one forgets to eat and when we smell the trays of food being delivered to hospital rooms during lunchtime, our intestines do somersaults, squeeze, shiver, and groan as we are reminded of our baser needs. We experience pangs of hunger that occur throughout the day because meals, and even glasses of water if one has time for them, are far apart. I have, in multiple instances, come home at night or in the morning and stood for a moment in the kitchen while having an internal debate with myself: Am I more tired or hungry?

And Shem’s line about the “grim beeper” made me laugh out loud. I remember twice walking into the bathroom to answer the call of nature, when suddenly the shrill sound from my pager or phone prompts me to abort the mission, walk out, and answer the other call.

The talk was, on the part of the doctors, all medicine....

The accuracy of this is stunning. When residents get together or when we have a spare moment to chat at work, we don’t usually talk about politics or friendships or relationships so much as we talk about medical stories. We trade tales of difficult procedures or illnesses or we tell hilarious medical jokes. Friends who spend time with us outside of the hospital are shocked at how much we speak about work with each other. But a resident’s life revolves around the hospital. We (almost) literally reside at the hospital and the eventful aspects of our lives usually occur in the healthcare setting. As one can see from even a quick glance at some posts on this blog, medicine is filled with human drama, humor, sickness, death, and life. How do we avoid talking about all that in our spare time?

The House of God found it difficult to let some young terminal guy die without pain, in peace. Even though Putzel and the Runt had agreed to let the Man With Agonal Respirations die that night, his kidney consult, a House red-hot Slurper named Mickey who’d been a football star in college, came along, went to see the Agonal Man, roared back to us and paged the Runt STAT. Mickey was foaming at the mouth, mad as hell that his “case” was dying.... Mickey called a cardiac arrest. From all over the House, terns and residents stormed into the room to save the Man With Agonal Respirations from a painless peaceful death. (p. 245)

These can be traumatic moments, indeed (I have written about coding patients herehere, and here). Shem’s point is that we in the hospital sometimes do chest compressions on patients we surely will not be able to resuscitate or, if they are resuscitated, will be dependent on a ventilator and unconscious for the remainder of their days. Do we try to revive a 90-year-old with metastatic cancer to the spine and brain? Or do we try instead to make the patient as comfortable as possible? From the patient’s side (and the patient’s family’s side) the difficulty, which seems insurmountable, is in accepting the end. For most physicians, like the narrator of The House of God, the difficulty lies in cracking ribs and sending electrical shocks through someone’s body with no clear purpose. In fact, we frequently ask families to let us make their loved ones comfortable, at least, before they pass away. But that is not always the decision that is made. And in the passage above Shem satirically chides those who believe the best course is always to be as aggressive as possible.

Eat My Dust Eddie, being run ragged in the death-house, the MICU [Medical Intensive Care Unit], looked awful, and was talking about his previous night on call: “I was admitting my sixth cardiac arrest and I got this call from the E.W. — Hooper, it was you — saying that there was a guy down there who’d arrested and you were thinking of sending him to me if he survived. I hung up the phone, got down on my knees, and prayed: Please, God, kill that guy! I was on my knees, I mean ON MY KNEES!” (p. 126) 

My colleagues and I have never wished that anyone would die. But, undoubtedly, we all identify with the feeling of being overwhelmed. When you’re exhausted and still admitting patient after patient and trying to work them up for a new diagnosis while also taking care of other patients on the service, writing notes, fielding pages or phone calls from nurses, drawing blood, and doing CPR, there are moments when it feels as if there is no more time or effort left to give. You are working with rope with no slack or trying desperately to tread water. This is especially true in a place like the Intensive Care Unit, where patients are sicker and require closer monitoring. During those moments, we beseech the hospital gods: “please, no more admissions, please no more.” Or, “please don’t let anyone get sicker than they are.” It’s not every day one feels this way, but it is often enough that the sentiment is familiar.
*   *   *
When The House of God was first published it was not received well by Dr. Bergman’s colleagues and peers. As he tells it,

... my book The House of God enraged many among the older generation of doctors. I was maligned and disliked. The book was censored by medical school deans, who often kept me from speaking at their schools. None of it really bothered me, though. I was secure in the understanding that all I had done was tell the truth about medical training.

Thus, the book is not only a brilliant and witty piece of satirical literature, it is also a “fiction of resistance,” as Bergman describes it. Its most sinister and clueless characters are the ones in charge. And in many cases their worship at the altar of medicine and science damages their relationships with patients, residents, or each other.

Much has been written about this aspect of the book in recent years: Dr. Howard Brody of the University of Texas Medical Branch wrote about its relevance in the American Medical Association’s Journal of Ethics in 2011. Dr. Suzanne Koven, a primary care physician, interviewed Dr. Bergman about the book for the Boston Globe in 2013. Dr. Howard Markel, a professor of pediatrics, psychiatry, and the history of medicine at the University of Michigan, discussed the book in a piece for the New York Times in 2009.

The reason for this interest may have something to do with a story Bergman tells in his own 2012 piece for The Atlantic:

And then one day I got a letter forwarded from my publisher, which included the line:
“I’m on call in a V.A. Hospital in Tulsa, and if it weren’t for your book I’d kill myself.”
I realized that I could be helpful to doctors who were going through the brutality of training. And so I began what has turned out to be a 35-year odyssey of speaking out, around the world, about resisting the inhumanity of medical training.

But the culture in medicine has changed dramatically since this book was written. Institutions are far more humane than they once were. Nevertheless, what we see and how much we need to see cannot change. Doctors ought to be exposed to a wide range of pathology; they must be exposed to death. This is how one learns to be a great doctor, to diagnose obscure diseases, to treat common diseases successfully, and to save lives during a hectic code in the hospital.

No matter how authority figures treat residents, Bergman’s book will always be precious to future generations of doctors. Like any great novel it identifies common yet significant human experiences. The author tells us, as it were, that “yes, I know exactly what this is like and I laughed at the same things you did. I made the same mistakes. I had the same difficulties.” Such commiseration ameliorates that unsettling feeling residents experience: the feeling that the hospital is a rabbit hole that spirals into a detached and harrowing yet hilarious world. And, because of The House of God, there will always be a shared understanding among residents and readers of the triumphs and tragedies accompanied by this feeling.

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.
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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.