Tuesday, December 13, 2016

The Distortion of “Death with Dignity”

I recently wrote a short essay for Public Discourse about the “death with dignity” movement. In the piece, titled “All Death is Death Without Dignity,” I compare the palliative-care movement — which seeks to alleviate the physical pain of death, often in the context of hospice care — to the physician-assisted suicide movement and find the differences in their respective descriptions of death telling. I quote somewhat extensively from the piece here, in order to then offer some additional thoughts on why the phrase “death with dignity” is a problem.

It has become common to talk of “death with dignity” in the policy world. There’s a Death with Dignity Act in Oregon, which permits physician-assisted suicide. There’s a Death with Dignity Act in Washington, which also legalizes physician-assisted suicide in certain circumstances. A Death with Dignity National Center exists in Portland, OR, a nonprofit that advocates for patients to “make their own end-of-life decisions, including how they die” — its website is plastered with images of smiling faces. The message, it seems, is that if one can control how one dies or when, the dying process is somehow less disturbing, awful, and humiliating. Instead, it can be dignifying.

Conversely, when dealing with end-stage cancer patients and palliative-care physicians in the hospital I rarely hear the “death with dignity” phrase used; more often I hear a palliative-care doctor say, “we want him (or her) to be comfortable.” It is a marked difference between the palliative-care movement and the assisted-suicide movement. In hospice, there is a resignation to the uneasiness and difficulty that comes with any death. With palliation, nurses and doctors can only free the patient from pain but not from the indignity of dying.

And why does choosing the way one dies have no relevance to whether or not a death is dignified?

Death is not simply a part of life but the end of human life — the end, in some sense, of an entire world. It is the transformation of a living member of our species into an immobile mass of flesh with no potential for life again. Rabbinic Jewish authorities recognized this in the Mishnah, an extensive commentary on Jewish law, when they wrote, “anyone who destroys a life is considered by Scripture to have destroyed an entire world; and anyone who saves a life is as if he saved an entire world.” Thus, not only are the physical manifestations of death ignoble and viscerally disturbing but, in principle, the end of an individual is tragic, too….

Death and dying detract from life by ending it. There are more or less disturbing ways to pass (you can die while someone is breaking your ribs doing CPR or you can die without that), but none of them is truly dignified. And choosing to preempt death using physician-assisted suicide doesn’t change this. In truth, there is no such thing as death with dignity. There is only somber tragedy, as your body lies exposed to the world’s Hobbesian bacteria and insects.

I think there is an important debate to be had about whether assisted suicide should be available in certain, very rare circumstances. But that is a separate discussion from the point I am making here, which is that the term “death with dignity” is inaccurate and misleading. The phrase changes our whole concept of death — it is a change that puts a positive spin on dying, a change that detracts from the somber aspects of the end of life.

Wikimedia Commons
This deceptive use of language reminds me of George Orwell, who focused some of his sharpest criticism on the use of language and how it changes our perception of events and ideas. In his famous 1946 essay “Politics and the English Language,” he condemns the “tendency of modern prose ... away from concreteness.” Specifically, Orwell exposes the misuse of euphemisms common in war propaganda — for instance talking about sending people to prison and death camps as the “elimination of unreliable elements.” Euphemisms can obfuscate the gravity and odiousness of an action, thus creating a false appearance so powerful that it can become tolerable, even appealing.

In 1984, Orwell offers a similar warning. The totalitarian government of Oceania uses its own language called Newspeak, destroying most of the English language to make way for abbreviations and vague terminology — “cutting the language down to the bone.” As one character explains, “the great wastage is in the verbs and adjectives, but there are hundreds of nouns that can be got rid of as well.” By manipulating the language, the government of Oceania manipulates the way people think, specifically the political and moral decisions they make. One of its most effective tools is the creation of catchy slogans that utterly distort reality: “war is peace,” “ignorance is strength,” and so forth.

I am not saying that the “Death with Dignity” movement is an attempt at mind control, like in the police state of 1984. Nor am I arguing that there is only one right way to express an idea. But when it comes to framing an argument or the context of a debate, we should be very careful when we use language that assumes certain principles that subtly distort reality. In this particular case, the phrase “death with dignity” assumes that death can be dignifying. At its core, however, death is nothing less than awful:

Indeed, the concept of “death with dignity” is a euphemism for what is one of the most heart-wrenching, difficult, unsettling, and undignified events of human existence. I think of that patient who chose to make his death comfortable and the image is disturbing rather than heartening. Where is the dignity in lying in a bed with flies buzzing around one’s head, vulnerable and lifeless?

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.

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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.