I’ve been on hiatus from blogging for the past few months because of the exam I took last week: the medical boards, or Step 1, an eight hour test that covers all of the first two years of medical school to prepare us for the hospital wards. To give you an idea of what it entails, most second-year medical students use a 550-page review book as a scaffold that at the minimum gets memorized. Subjects include anatomy, physiology, pathology, biochemistry, pharmacology, microbiology, immunology, embryology, and others. One physician writer described the first half of medical school like this: “It was like being asked to enter a grocery store and memorize the names of every product in the store, their number and location, every ingredient in every product in the order in which they appear on the food label, and then to do the same thing in every grocery store in the city.” The test was not so much one of depth, but rather of immense, extreme breadth.

Despite several stressful months of preparing for it, I do not begrudge the exam. The process of going through all the material in a systematic way led to a powerful sense of consolidation, and there were many moments when I made connections I might not have seen otherwise. Absorbing the material set a mental foundation that I hope I can refer back to for the rest of my career. Even if the details fade (as I’ve been assured by nearly everyone they will), there is value to learning them right the first time. Knowing something exists means you know what to look up and how to fit what you learn into a broader context. As I studied, I held in mind a piece of advice from one of our neurology professors: “It is not inherently obvious what subset of information will have clinical relevance.” Second year was the time to commit many, many details to memory, some of which we will use frequently and some of which we may never see again. Having it all stored somewhere means as we enter the hospitals we can sort through what we know, appreciate new information with perspective, figure out what is relevant, and apply it to care for patients.

However, I found the process of studying changed the way I think about medicine. After a while, studying transitioned from learning and understanding to committing to memory. It involved going over things I already knew – but doing it over and over and over. When dealing with a timed, multiple-choice test, much of being successful has to do with making quick associations. This set of symptoms is associated with this one disease; this disease is associated with these risk factors; these risk factors contraindicate these drugs; this drug is associated with these side effects. The months leading up to the exam, I both consciously and unconsciously trained my brain to think in terms of links; of single answers; of being fast. I became skilled at seeing a phrase and having others come immediately to mind. On the boards, you do not make a differential diagnosis. You do not ask: what’s more or less likely? Rather, you ask: what is it?

And on the test, there always was an answer. Our job was simply to select the correct one. The facts in each case added up. Presentations of illnesses were classic and common. There were little to no loose ends – nothing that could not be packaged into a single diagnostic box.

This is quite different from medical reality. On the test, if I did not immediately identify an answer to a clinical case I could reasonably think, “I’ll get to the bottom of this.” I could go over the facts that were given and try to see the pattern that would fit with a known diagnosis. “I’ll get to the bottom of this” is something I would love to be able to tell patients, too. But we know it isn’t always true. Sometimes we will never get to the bottom of a particular person’s case. Sometimes we get halfway there and then have to change course. And sometimes, we only understand snippets of what is happening and why. Pieces do not always fit together neatly. Some facts are tangents and red herrings. Clinical experience cultivates the ability to hone in on the relevant and filter through the rest, yet some information can be mysterious, playing an unclear role in the unfolding narrative.

A few weeks before my exam, I saw a middle-aged patient whose body was mysteriously failing her. She had been seen over the course of years by multiple doctors in multiple specialties. What was known was that various organs were shutting down. The pattern and progression of her symptoms screamed “autoimmune,” but her presentation did not fit into any known category of autoimmune diagnosis. Instead, she was treated symptomatically, without a diagnosis and without an appreciation of the cause.  I thought about what she would have looked like had she been on the boards. Details would have been tweaked so that she did fit into a neat disease category. With a click on an answer choice, I would have been able to give her a diagnosis.

I hope what I learned for the boards will help me. Because this week I begin. Classrooms are a remnant of the first half of medical school. Now, I’ll be in the hospitals every day. I will be a part of a medical team. I will be with patients, and I will care for people. This is what all the studying was for. This is what we are here for.

Beyond the incredible privilege of being able to care for other people, I’m looking forward to the creative aspects of thinking about medicine. Of thinking broadly, deeply, and teasing apart mysteries and possibilities. Of spending more than 60 seconds on each case. Of the gray areas, and of the complexity.

I look forward to the cases where A, B, C, D, and E may all have hints of being correct. And I look forward to plugging away to make sense of an illness even when the answer is seemingly none of the above.

That was in 1977. In 2000, Dr. Daniel J. Wallace and Dr. Michael Weisman published a paper rekindling old requests to remove Reiter’s name from the syndrome. Shortly after, the patient advocacy group Spondylitis Association of America voted to approve the name change. In 2003, a group of rheumatology journal editors decided against continued use of the eponym in their journals. The official retraction from the doctors who originally proposed the eponym came in 2009.

Sadly, the story is still not over.

The campaign to remove Reiter’s name should not actually have been morally ambiguous. Medical eponyms are meant to honor individuals who contributed to the field. Torture and murder are not things we wish to honor. After the war, a profound ethical debate sprung from the question of what to do with discoveries that came about from forced experimentation on human beings without their consent. But the question of the medical eponym does not fall into that category. Up for debate was not whether we should keep or discard useful medical information obtained through grossly immoral means. All medical information discovered would still be known. All that was asked is that the result was not named to reward a criminal. As the physicians who wrote the retraction summarized their reasoning:

“Medicine is a moral enterprise. Physicians serve to promote the welfare of their patients. Hans Reiter was a Nazi war criminal responsible for heinous atrocities that violated the precepts of humanity, ethics, and professionalism. We see no acceptable rationale to preserve any professional memory of Reiter within our medical culture, except as a symbol of what our societal values obligate us to reject.”

The difficult part, it turned out, was not making the moral call but implementing it. The New York Times reported on the Reiter scandal in 2000, writing: “The precise steps needed to get rid of an eponym are unclear and vary with who uses them.” A 2005 analysis found that medical journal use of the eponym without mentioning its disfavored used dropped from 57% in 1998 to 34% in 2003. One interpretation is that these figures are encouraging; use of the eponym, after all, is decreasing. But considering that the campaign to change the name began in 1977, is a less than 50% drop over the first twenty years really such tremendous progress? Moreover, the study showed that change in the US was particularly slow, with US authors more likely to use the eponym than authors in Europe.

Since then, other medical eponyms tied to Nazi crimes have surfaced. The “Clara cell,” a type of cell lining the airways to the lungs, was named after Max Clara, an “active and outspoken Nazi” who made his discovery using tissues from murdered Third Reich victims. Then there is Friedrich Wegner of the vessel disease “Wegener’s granulomatosis”: Wegener joined the brownshirts eight months before Hitler seized power, joined the Nazi party in 1933, worked in “close proximity to the genocide machinery in Lodz,” and was wanted as a war criminal.

As a medical student in 2012, here is what I have learned. I have heard “reactive arthritis,” but I have also learned about “Reiter’s syndrome.” I have learned about the Clara cell, without any qualification of its tainted name. I have learned about Wegener’s granulomatosis: this one was given with a qualification of its tainted history, but then in group discussion, the eponym was the norm. Immediately after doctors used it, it stuck with the students.

What this shows is that even an official retraction is not enough to change terminology that is deeply engrained. First impressions set the tone. Changing language takes more than official notification. It takes proactive, universal involvement. It takes a decision, and sticking to it. It takes a community, setting an example.

So, here is my humble request to doctors: please introduce these terms without their Nazi affiliations. If a tainted term has had another one substituted, please, just use the newer term. You can mention its former name and reasons for discontinued use, so that students may still recognize it if others refer to it. But from there after, make the newer term the norm. The norms of language follow from how terms are introduced.

Hans Reiter, responsible for the torture and murder of thousands of innocent people, was able to work and enjoy life until the age of 88. His crimes against humankind can never be erased. The least we can do is erase any praise of him and others like him. Saying their actions were deeply antithetical to the values of modern medicine is an understatement.

It takes a community to shape language. For the victims, and to make a statement against human rights abuses, I hope we can make it happen.

In the past few weeks before the vote, bioethicists, physicians, patients, and others have become more vocal – with those in opposition coming forward particularly strong. Last week, for example, bioethicist Ezekiel Emanuel published an opinion piece in the New York Times entitled, “Four Myths About Doctor-Assisted Suicide.” The alleged myths he tackles about PAS are: 1) Most patients who desire it are in excruciating physical pain, 2) It is the inevitable result of advanced medical technology that enables us to prolong life, 3) It will improve end of life for everyone, and 4) It is a guaranteed quick and painless death.

There is much to address in this piece and about PAS in general, and I will not be respond to it all here (please scroll to the end for links to other recommended reading). But in the last few days before the vote, there are a few key points I want to address.

An advantage of PAS being legal in Oregon for fourteen years already is that we have actual data to help analyze some of the theoretical concerns. Do the data support opponents’ fears?

Physical pain versus suffering

Dr. Emanuel cites some of the Oregon data in his piece, showing, for example, that “Only 22 percent of patients who died between 1998 and 2009 by assisted suicide in Oregon… were in pain or afraid of being in pain.” The reason he cites this data is to debunk the alleged myth that most people who desire PAS do so because they are in “excruciating physical pain.” This perception of the terminally ill’s pain, he says, is the “fundamental claim” behind support for PAS – implying that with the numbers in fact low, the argument to support PAS is hurt.

But I’m not so sure that is the fundamental claim. Support for PAS was born from wanting the option to relieve patient suffering, which anyone who has dealt with devastating illness knows is not always the same as excruciating physical pain. The data from Oregon show that the most frequently mentioned end-of-life concerns were: losing autonomy (90.9%), decreasing ability to participate in activities that made life enjoyable (88.3%), and loss of dignity (82.7%). It is for these reasons that the terminally ill wish for a dignified death, and for these reasons that supporters of PAS wish to enable caregivers to provide it.

Evidence for safeguards

Another piece of data cited from Oregon is that PAS is used extremely rarely. Only 0.2% of terminally ill patients, Dr. Emanuel points out, opted to use it. He uses this figure to debunk the myth that PAS will help all have a good death. While that is one way to view it, another way is that these figures are actually quite reassuring, in that PAS has been used as intended. PAS is not meant to ensure a good death for all. If more than a very tiny percentage of the state were using it, we would and should worry: we would worry that individuals are using it as a substitute for palliative care, that they are being pressured, and that they are rushing to death without considering all the other options they should be considering first.

Who are the 0.2%?  Data from Oregon show the median age of patients choosing death with dignity was 71 years old, and the most common underlying condition was cancer (80.9%), followed by ALS (7.4%). Dr. Emanuel chooses to describe them this way: “Well-off, well-educated people, typically suffering from cancer, who are used to controlling everything in their lives — the top 0.2 percent.”  While Dr. Emanuel is factually accurate in his description of the patients’ education and underlying disease, how he chooses to characterize the reasons they wish to die a peaceful death is surprisingly insensitive. One comment addressed it best:

“I have been recently diagnosed with cancer. I know that a cancer death is a miserable way to die. I’m not sure I would choose physician assisted suicide but it would be nice to know the option is available. It is not because I’m a spoiled woman used to controlling everything. It is because I have seen a cancer death and it’s anything but peaceful.”

Wanting to exercise control over a terminal illness accompanied by profound suffering is not something to be ashamed of. The desire for a peaceful death is universal. Fear of death is universal. Fear of suffering while dying is universal. That fear is not a mark of privilege, but of the human condition. It is something we should take very seriously, be sympathetic towards, and help relieve – certainly not belittle as a desire for “controlling everything” gone awry.

Dr. Emanuel continues: “And who are the people most likely to be abused if assisted suicide is legalized? The poor, poorly educated, dying patients who pose a burden to their relatives.” Consideration of individuals who might be abused is a valid concern voiced by many opponents and wary supporters, too. Fortunately, the data do not support it. With 98.3% of patients who used PAS insured, 93.2% with a high school diploma or higher, and 94.4% of patients informing their families of the decision, where is the abuse of the poor and poorly educated? A 2007 study published in the Journal of Medical Ethics backed this more systematically, analyzing all the outcomes and concluding “no evidence of heightened risk for the elderly, women, the uninsured, people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations.”

What some see as evidence for privilege, I see as evidence for safeguards – ones that are working exactly as planned.

The false dichotomy of palliative care “versus” PAS

“Instead of attempting to legalize physician-assisted suicide, we should focus our energies on what really matters: improving care for the dying — ensuring that all patients can openly talk with their physicians and families about their wishes and have access to high-quality palliative or hospice care before they suffer needless medical procedures” Emanuel writes. The Massachusetts Medical Society, which has spoken out against the bill, similarly presents it as a one or the other situation: “Instead of participating in assisted suicide, physicians must aggressively respond to the needs of patients at the end of life.” While I agree with their aims, they set up a false dichotomy: the implication is that we either improve patient care, or we approve PAS.

But improving end of life care and providing the option of a dignified death are not mutually exclusive. Of the patients in Oregon who went through with PAS, 89.7% were enrolled in hospice care, calling into question the assertion that if we simply improve hospice care, patients will no longer wish to die. Since the passage of its Death with Dignity law, Oregon has actually become a nationwide leader in palliative care. As physician and former New England Journal of Medicine Editor-in-Chief Marcia Angell explained: “At first, there were fears that the availability of physician-assisted dying might crowd out good palliative care, but it has had the opposite effect. Most experts believe that Oregon now has among the best palliative care in the country.”

If anything, the data support a trend that recognizing death with dignity has gone hand in hand with recognizing end of life issues across the board – and that includes improving palliative care.

Comparing to an ideal world

The opposition to PAS often relies on an assumption: That something else can be done. That premature death does not have to happen. That there must be another option. Dr. Emanuel put it this way: “Typically, our response to suicidal feelings associated with depression and hopelessness is not to give people the means to end their lives but to offer them counseling and caring.”

In an ideal world, he would be right. In an ideal world, terminally ill patients would find solace in counseling and somehow find it within themselves to embrace their last few months of life, despite often being immobile, bedridden, and unable to take care of themselves. In an ideal world, rather, no one would be made to endure such suffering in the first place.

But we do not live in an ideal world. We live in a world where counseling does not work for everyone; where even the best palliative care and family support does not convince every terminally ill patient that a few more months of suffering is worth it. Family members know well that the bleak reality of end-of-life care is that there are situations where everything that can be done has been done – and their loved one still comes to a thoughtful and rational decision to wish to end her life now, on her own terms.

As a result, much of the opposition to PAS hinges on a logical fallacy: they contrast PAS to an ideal world, when they should be contrasting PAS to the reality that is occurring now. The reality that is occurring now is that people already choose to end their lives. Without the assistance of medicine, they just do it more brutally. They starve to death. They acquire guns and shoot themselves. Dr. Emanuel points to some potential complications of PAS: some patients have vomited their pills, for example, while one person awoke after taking his pills. But for this to be a compelling argument against PAS, we would have to be saying that these outcomes are worse than the outcomes that already exist. Arguing that we should not legalize anything that comes with any risk, if taken to its logical conclusion, is an argument against nearly all medical procedures. The reason we perform them is not that they are free from risks – but that we believe the benefits outweigh the risks.

The appeal of PAS

“The appeal of physician assisted suicide is based on a fantasy,” Dr. Emanuel concludes. If your idea of PAS is that it is to relieve excruciating physical pain, that it will play a role in everyone’s end-of-life decision-making, and that there will never be any complications, Dr. Emanuel is correct that this is a fantasy.

But if your idea of PAS is that it will provide an option for a very small number of terminally ill patients who come to a thoughtful, rational, and non-coerced agreement with their loved ones and doctors that they wish to die peacefully rather than live out the last few months of their illness while suffering – then it is not.

To me, the appeal of PAS was not based on any of the myths Dr. Emanuel debunks. It is based on knowledge that if I, a loved one, or one of my future patients finds themselves trapped in a terminal illness accompanied by deep misery and psychological distress – suffering which cannot and was not helped by any form of counseling or care – that the ability to die at home, peacefully, and on the patient’s own terms exists as an option. It is the option that appeals to me – not that we would resort to it without time and deep thought, and certainly never that we would resort to it as a substitute for everything else the medical system has to offer for life. It is the knowledge that in the cases where everything was tried but still did not offer solace, and the end is inevitably coming, that it can be done with peace, and as the Act says, with dignity.

That is the appeal.

And the data show it can be done.

***

For further reading, here are some additional pieces – from both sides – that I recommend.

In favor:

In Defense of Dignity, by Dan Savage. Published in The Stranger.

May Doctors Help You to Die? by Marcia Angell. Published in The New York Review of Books.

Opposed:

Physician-Assisted Suicide Is Not Progressive, by Ira Byock. Published in The Atlantic.

Suicide by Choice? Not so Fast, by Ben Mattlin. Published in the New York Times.

Those were the results of a study published by Harvard researchers Dr. Aaron Kesselheim and colleagues in the New England Journal of Medicine last month. The story has received a fair amount of coverage since then, including being analyzed by the Scientific American Guest Blog, the Los Angeles Times, and the New York Times.

There’s a question of ethical and practical relevance embedded in this: is it justifiable to judge a paper by its author or funding source – even when you cannot discern a difference in quality?

The perspective from much of the medical side seems to be a definite yes. The divide between doctors and so-called “Big Pharma” is nothing new. Pharma has a bad reputation in the medical community, and there is history to back it. One of the most well-known scandals involved Vioxx being taken off the market in 2004 after Merck admitted it withheld information about known adverse risk of heart disease, resulting in tens of thousands of deaths. In 2008, physician and former Editor in Chief of the New England Journal of Medicine Marcia Angell wrote, “Bias in the way industry-sponsored research is conducted and reported is not unusual and by no means limited to Merck.” In 2011, Harriet Washington published a piece in The American Scholar highlighting some of the ways industry has misled and manipulated data, which include: comparing a new drug against a placebo rather than against another treatment option, comparing drugs to competitors in wrong dosages, pairing a drug with one known to work well, ending a trial prematurely when they see “clues that the trial is going south,” and cherry-picking only positive findings to report. This type of behavior can and should be called out as scientific misconduct, and those who commit it must be held accountable.

But if there’s something just a bit unsavory about judging a paper solely by who wrote it, there’s good reason for it. The scientific world prides itself on judging content of ideas, not presumed integrity of authors. It’s the rationale behind the widespread practice of research journals blinding reviewers of authors’ names. Using any criteria other than quality in scientific evaluation is admittedly a kind of bias – something we are usually quite wary of in science. As the authors of the study succinctly put it, “The methodologic rigor of a trial, not its funding disclosure, should be a primary determinant of its credibility.” Moreover, if we’re comfortable using authorship as a proxy for quality, it’s not an absurd leap to start extending that approach to authors outside of industry. It’s not uncommon to hear accusations of industry bias because of self-interest in financial gain; but imagine if we started hearing sweeping accusations that young researchers, for example, should be trusted less because of their self-interest in trying to advance their careers. Industry is not alone in being capable of bias. The problem of publishing only positive results, for instance, is a recognized problem that has been discussed in the scientific community at large for years.

There are also practical concerns of being overly dismissive of industry. Amidst the history of manipulation and fraud, there are medical contributions too. In the New York Times, surgeon and author Pauline Chen cited data showing that industry was responsible for nearly 60 percent of the more than $100 billion spent on research in 2007. Using authorship ties as a proxy for quality means possibly overlooking research of potential value for patients.

So why not just use quality, removing the need to probe into researchers’ background, affiliations, and motivations? Unfortunately, letting the data speak for themselves is not always possible. The low quality parts could be found in what does not make it to print. In the list of misconduct Washington’s article described, ending a trial prematurely and failing to report negative results are forms of misconduct that would not be transparent from a paper alone. Similarly, failing to report side effects, as in the Vioxx scandal, is another way relevant data can be hidden. That’s conscious and explicit manipulation, but there’s evidence for unconscious manipulation too. Numerous studies have found that the “funding bias,” in which conclusions of research are more likely to agree with the sponsor’s aims, is a real phenomenon. While unconscious bias is again not unique to industry, there’s something to be said for awareness of the trend where it has been clearly tracked.

At the end of all this, we are left with two competing facts: 1) Industry sometimes produces valuable research that contributes to patient care. 2) There is also a significant history of manipulation. Is it possible to reconcile these two facts, in a way that is both vigilant against misconduct but also doesn’t pass over potentially valuable findings?

I think the last point about quality not always being transparent is the critical fact. Given that it’s entirely scientifically feasible for a study that appears to be of good quality to actually be flawed, holding research conducted by authors with a dubious history seems justifiable. Should you dismiss industry across the board? Probably not. I think the authors’ caution against the dangers of excessive skepticism is sensible. I also agree that more “fundamental strategies” such as increased protocol and data transparency will make the whole process of determining quality easier. But as it stands, those doctors in the study voicing skepticism about the conclusions of industry sponsored research is understandable. As it goes, a critical eye and looking to others to replicate findings before you embrace new conclusions is probably a good approach to research in general, no matter who the initial authors are.

***

“Mr. M?” I ask gently, knocking on the hospital room door. “May I come in?”

“Hello? Hello?”

I enter at what I think is an invitation to me, but see that 79-year-old Mr. M is speaking into the phone instead.

“I’m sorry, I can come back…” I start to say. Then I overhear what he is saying.

“If you don’t come get me, I’m gonna sneak outta here,” he says into the phone. “I’m gonna sneak outta this place.”

Later I learn that he has been having that conversation all day. I also learn there is never anyone on the other end of the line.

I ask him where he wants to go, and why. What seems to be the problem?

He thinks the doctors don’t pay attention to him and that the nurses are out to get him. He thinks the food is poisonous and that he has no illness. He keeps trying to tell his son, but his son won’t listen. Why are they keeping him here?

I want to reassure him, and there are things I can say with confidence. No; the hospital food might not taste great, but it is not poisonous. You are here because of your kidneys; they haven’t been doing so well since your surgery.

“And the doctors have been stealing from me.”

I desperately want to reassure him that they are not. I want to tell him that the hospital staff here is compassionate and caring. That you can trust them. That they are here to help.

But I can’t quite get the words out.

***

“How does this patient make you feel?”

I feel sadness. I feel pity. I feel helplessness.

I am thinking back to thirteen years ago.

***

“It’s Wilma,” my 83-year-old grandmother says. “She is stealing from me!”

My father sighs. “No one is stealing from you, Ma,” he says for what must be the third time that week. The year is 1999. My grandmother is in the early stages of the Alzheimer’s disease. Meanwhile, our family likes Wilma, her new live-in nurse. The combination of those two facts made for an easy answer: No, Wilma cannot be stealing from you.

I am ten years old, somewhere in the background of all this, listening quietly and saying nothing. I hear my grandmother growing frustrated that my father does not believe her. I hear my father growing frustrated that my grandmother can’t get this idea out of her mind. Slight variations of the same conversation happen over and over.

“You must have misplaced your necklace. Did you check the bedroom drawers?”

It was only years later, when my grandmother was in the late stages of Alzheimer’s disease and thus no longer able to communicate with us, that we learned that she was right and we were wrong. It had been easy to doubt my aging grandmother. It was much more difficult to argue with my grandmother’s valuables stashed away in Wilma’s purse.

My grandmother’s cries, and our persistent failure to take them seriously, upset me to this day.

***

The world of psychiatry has a name for the phenomenon of a patient reminding a caregiver of someone else. It’s called countertransference, and it refers to a caregiver unconsciously projecting past emotions onto a current patient. It can be a response to transference, which involves a patient unconsciously projecting emotions onto a caregiver.

The idea of a physician entering a patient’s room with any emotional partiality might seem unsettling. Physicians are supposed to be objective and just. But a physician, too, is a human being: one with past experiences, feelings, and preferences. Is it so hard to imagine that something accumulated from the narrative this is a doctor’s life might affect a patient interaction, even subtly? I think of the family physician who told me how emotionally taxing it was to care for young children every day during the years she and her own husband were struggling with infertility. I think of the oncologist who felt a personal stab of pain upon encountering each breast cancer patient who reminded him of the mother he lost to the illness. Both were excellent physicians, and neither of their admissions struck me as unreasonable.

Still, having patients remind them of others is not something I’ve seen caregivers proclaim with pride. I think the reason is the realization that if countertransference exists, there is also the possibility of it taking worse forms than sadness or pity. When that patient reminded me of my grandmother, my reaction motivated me to spend more time with him and to take his concerns seriously. But what if, for example, I become annoyed with a patient? Or distrusting? Or abrupt?

I see countertransference less as something to be proud or ashamed of, but rather as a reality that must be grappled with – whatever the consequences. When we participate in phenomena unconsciously, the least we can do is attempt to bring our thought processes to the surface: to reflect on our patient interactions honestly, and to try to discern why certain encounters invoke the reactions they do. Only then can the situation be addressed for the benefit of the patient.

“How does this patient make you feel?”

As long as I have an answer to that question, I hope I may continue to explore why.

(Certain details of this story have been modified slightly to protect the privacy of the patient.)

One by one, the ten or so of us in the neuroanatomy lab bay recited the vessels in the Circle of Willis, answering additional questions about nerves we would pass by and parts of the brain we would supply energy for. When someone made an error, the rest of the group simultaneously mumbled the correct answer.

“I want to see everyone else mouthing it,” our instructor said. “Say it to yourself as you’re walking down the street.”

People have said that medical school is a bubble. Others prefer the term echo chamber. In many ways, it really is. I walk through campus and overhear someone on her phone explaining G protein-coupled receptors. On the way to class, two students vigorously debate the rationale for a certain stroke treatment. As I walk down the street, I find myself noticing abnormalities in strangers and thinking up differential diagnoses. I am starting to see medicine everywhere, in everyone.

It wasn’t always like this. We came to medical school as a class of 165 individuals, all with diverse personalities and interests. Some already knew exactly what they wanted to do. Psychiatry. Othropedic surgery. Oncology. Then there were our other passions. Global health, policy, ethics, creative writing, music, everything in between. In the beginning, it was those differences that we recognized and embraced. “Learn from your classmates,” was a recommendation I heard often. I did. We did. Hearing the multitude of reasons people chose to pursue the path of medicine was inspiring.

Now, regardless of those interests, the way medical school works is that we all must be trained broadly. Everyone goes through everything, and we go through it at the same time. Neurology, cardiovascular, renal. Steps of glycolysis, inborn errors of metabolism. Visualizing the optic disc. Eliciting deep tendon reflexes. Asking patients about sex. We read the same books. We recite the same words. Earlier this year, we purchased the same equipment; now we struggle how to use it.

We are sounding more and more alike because there is a specific end goal we want to reach. We look at the third and fourth years who look at the residents who look at the attendings, and we admire their knowledge, their competence, and their skills. I watch those who know more and actively ask myself: how can I be like that? What knowledge do I need to obtain, and what skills must I work on?

Because it’s only once we reach that bank of broad knowledge can we begin to diverge once again. It’s only once we know a little about a lot can we choose to learn a lot about a little.

There’s a quote I love from Milan Kundera’s Laughable Loves:

“We pass through the present with our eyes blindfolded. We are permitted merely to sense and guess at what we are actually experiencing. Only later when the cloth is untied can we glance at the past and find out what we have experienced and what meaning it has.”

In just seven months, I will be out of the classrooms and on the hospital wards. I remind myself that all the studying now is for then, for that, for the patients.

I cannot wait to see what happens when the blindfold of second year comes off.

I think many of us were concerned about losing ourselves as we became immersed in the medical school bubble. But as it’s happening, I find it’s okay. There will be a time for our personalities and differences to shine again. For now, there is excitement in joining the bubble; in becoming the same.

In a real-world setting, typically the most we can do is identify differences in outcome. A man is selected for hire over a woman; fewer women reach tenure track positions; there’s a gender gap in publications. Bias may be suspected in some cases, but the difficulty in using outcomes to prove it is that the differences could be due to many potential factors. We can speculate: perhaps women are less interested in the field. Perhaps women make lifestyle choices that lead them away from leadership positions. In a real-world setting, when any number of variables can contribute to an outcome, it’s essentially impossible to tease them apart and pinpoint what is causative.

The only way to do that would be by a randomized controlled experiment. This means creating a situation where all variables other than the one of interest are held equal, so that differences in outcome can indeed be attributed to the one factor that differs. If it’s gender bias we are interested in, that would mean comparing reactions toward two identical human beings – identical in intelligence, competence, lifestyle, goals, etc. – with the one difference between them that one is a man and one is a woman. Not exactly a situation that exists in the real world.

But in a groundbreaking study published in PNAS last week by Corinne Moss-Racusin and colleagues, that is exactly what was done. On Wednesday, Sean Carroll blogged about and brought to light the research from Yale that had scientists presented with application materials from a student applying for a lab manager position and who intended to go on to graduate school. Half the scientists were given the application with a male name attached, and half were given the exact same application with a female name attached. Results found that the “female” applicants were rated significantly lower than the “males” in competence, hireability, and whether the scientist would be willing to mentor the student.

The scientists also offered lower starting salaries to the “female” applicants: $26,507.94 compared to $30,238.10.

This is really important. This is really important.

Whenever the subject of women in science comes up, there are people fiercely committed to the idea that sexism does not exist. They will point to everything and anything else to explain differences while becoming angry and condescending if you even suggest that discrimination could be a factor. But these people are wrong. This data shows they are wrong. And if you encounter them, you can now use this study to inform them they’re wrong. You can say that a study found that absolutely all other factors held equal, females are discriminated against in science. Sexism exists. It’s real. Certainly, you cannot and should not argue it’s everything. But no longer can you argue it’s nothing.

We are not talking about equality of outcomes here; this result shows bias thwarts equality of opportunity.

Here are three additional reasons why this study is such a big deal.

1) Both male and female scientists were equally guilty of committing the gender bias. Yes – women can behave in ways that are sexist, too. Women need to examine their attitudes and actions toward women just as much as men do. What this suggests is that the biases likely did not arise from overt misogyny but were rather a manifestation of subtler prejudices internalized from societal stereotypes. As the authors put it,

“If faculty express gender biases, we are not suggesting that these biases are intentional or stem from a conscious desire to impede the progress of women in science. Past studies indicate that people’s behavior is shaped by implicit or unintended biases, stemming from repeated exposure to pervasive cultural stereotypes that portray women as less competent…”

2) When scientists judged the female applicants more harshly, they did not use sexist reasoning to do so. Instead, they drew upon ostensibly sound reasons to justify why they would not want to hire her: she is not competent enough. Sexism is an ugly word, so many of us are only comfortable identifying it when explicitly misogynistic language or behavior is exhibited. But this shows that you do not need to use anti-women language or even harbor conscious anti-women beliefs to behave in ways that are effectively anti-women.

Practically, this fact makes it all the more easy for women to internalize unfair criticisms as valid. If your work is rejected for an obviously bad reason, such as “it’s because you’re a woman,” you can simply dismiss the one who rejected you as biased and therefore not worth taking seriously. But if someone tells you that you are less competent, it’s easy to accept as true. And why shouldn’t you? Who wants to go through life constantly trying to sort through which critiques from superiors are based on the content of your work, and which are unduly influenced by the incidental characteristics of who you happen to be? Unfortunately, too, many women are not attuned to subtle gender biases. Making those calls is bound to be a complex and imperfect endeavor. But not recognizing it when it’s happening means accepting: “I am not competent.” It means believing: “I do not deserve this job.”

3) As troubling as these results are, they are also critical toward solutions. That biases against women are often subconscious means people need extra prodding to realize and combat them. I’m willing to bet that many in the study, just like people who take Implicit Association Tests, would be upset to learn they subconsciously discriminate against women, and they would want to fix it. Implicit biases cannot be overcome until they are realized, and this study accomplishes that key first step: awareness.

From reading the comments on Sean Carroll’s post, most people who read this will have one of four reactions:

1) This is not surprising, but I’m glad we have something concrete to show what we’ve known all along.

2) This is surprising and disturbing.

3) Figure 2 is misleading because the y-axis does not start at zero. Therefore, I will reject everything else exposed by this study.

4) Equally qualified women should be discriminated against, because they could go off and get pregnant.

I’m afraid the 4’s do exist, and from my experience they are not very willing to have their minds changed. (For a concise article that touches on why their argument is flawed, I’d recommend this piece by my sister, Shara Yurkiewicz.)

What’s important is that the 2’s are out there. Certainly, some gender bias in the workplace still takes the form of blatant misogyny. But a large portion of it does not. It’s subtle. It’s subconscious. And many people who perpetrate it, if only made aware of what they are doing, would want to change. I once knew of a professor who consistently made eye contact with males when engaging in conversations about science; only when it was pointed out to him did he realize he was doing it, and he was grateful that someone told him so he could change.

The 2’s exist, but they can only change if they have the facts. These are the facts: equally competent women in science are viewed as less competent because of their gender. Remember them. Cite them. And if you want change, I would urge you to share them as widely as possible.

The piece is a response to a new technological advance in looking at a baby’s genetic makeup while it’s still in utero. Over the summer, two teams of researchers at the University of Washington in Seattle and Stanford University independently reported that they could now map a fetus’s entire genome during the first trimester by drawing Mom’s blood that contains bits of fetal DNA.

Prenatal genetic testing is not new. Chorionic villus sampling can detect chromosomal abnormalities such as Down syndrome ten to twelve weeks into pregnancy. Amniocentesis between fifteen and twenty weeks can find chromosomal abnormalities as well as several other genetic disorders, such as sickle cell disease, cystic fibrosis, and Tay-Sachs disease. Now, we face the possibility of whole genome scanning. Advances in technology were expected. As a result, discussions on the ethical implications of knowing a baby’s genetic makeup have been in full swing for a while.

In light of the new advances, I am re-posting an article I wrote a little over a year ago that delves into these ethical issues and was recommended by the Hastings Center. The technology may have moved forward, but the dilemmas remain the same, and they are as pertinent as ever. Namely, is prenatal screening a triumph for reproductive freedom – or will it lead us down a path of prejudice? As more information becomes available, how should we use prenatal genetic testing beneficially and responsibly?

(From the archives: the following piece originally appeared with slight modifications in Science Progress on July 18, 2011)

***

In July 2011, 37 parents and supporters in New Zealand brought a complaint to the International Criminal Court accusing their state, and in particular the Minister of Health, of crimes against humanity. The Minister encourages prenatal screening and selective abortion of unborn babies diagnosed with Down syndrome, they wrote. “This is government funded social engineering and is also eugenics where only the perfect may be born.”

The case comes on the heels of a scientific discovery in December 2010, when two research teams independently reported that they could reconstruct fetal DNA taken from the mother’s blood. Analyzing this DNA would allow testing for a range of genetic conditions, including one of the most common chromosomal disorders, Down syndrome, earlier in pregnancy than ever before. Additionally, the simple blood draw would evade the risk of miscarriage that comes with current methods of prenatal screening, including amniocentesis (which involves sticking a needle through the abdomen and into the uterus) and chorionic villus sampling (done either by a needle through the abdomen or by prodding a tube through the vagina and cervix). An early, noninvasive test could in theory become an option for all pregnant women, not just those who carry a high risk of genetic disease.

Due to the earlier testing methods, Down syndrome births decreased 11 percent between 1989 and 2006. Currently, over 80 percent of fetuses diagnosed with Down syndrome are aborted in the United States. These figures hit 91 to 93 percent in the United Kingdom and other parts of Europe. Learning a prenatal diagnosis at nine weeks, in contrast to the 10 to 12 weeks typical for chorionic villus sampling and 15 to 20 weeks for amniocentesis, could alleviate some of the physical and emotional burdens that accompany later abortions, causing these numbers to spike even higher.

A scroll through the online comments to the news stories reveals that the reaction in New Zealand was not unique. “Where do we draw the line?” one user asks. “Screen for autism? Screen for ADD? Abort those kids? How about just screen for anyone with an IQ <100? This notion of ‘designer babies’ is just appalling!” Another laments, “Welcome to the world of ‘Gattaca,’ designer babies and a new ‘master race.’” And yet another: “Anybody who aborts a child with a disability will never know what they are missing, and it is truly your loss, and the world’s loss. I weep for all those unborn babies who never will be able to share their gifts … an unspeakable tragedy.”

Hold that thought.

The Internet critics are right to make the point, as Marcy Darnovsky at Science Progress and many others have, that new developments in the laboratory necessitate profound moral reflection outside of it. But how much of these fears are justified? Is this really eugenics by abortion?

Like it or not, we are afforded a lot of liberty when it comes to reproductive decision-making. Parents may choose how to use their reproductive capacities, what kinds of children they want, and how to raise them according to their own standards of what they believe is best, free from government interference “unless the state could show compelling justification for the restriction,” writes bioethicist John Robertson. This freedom has a legal backing too, with the Supreme Court long protecting the rights of people to make their own decisions with regard to marriage, procreation, motherhood, family, and child rearing. If it’s “designer babies” we are worried about, we are already there. Women can now seek egg donors with criteria as specific as ethnicity and minimum height and SAT scores. Preimplantation genetic diagnosis involves screening for genetic blemishes in embryos created through in vitro fertilization and cherry-picking only the healthy ones to implant.

There is also the freedom not to have kids at all. Regardless of one’s personal opinion on the matter, abortion is legally permitted in this country. Moreover, a woman does not have to disclose her reasons for that choice. If we say yes to abortion for no reason at all, it seems illogical to forbid it for a well-defined reason, such as genetic disease.

So what’s the problem? Answering that means figuring out whether prenatal genetic testing is categorically different—or different only in degree—from what is accepted and established.

Bioethicists have spilt a lot of ink doing just that, and many of their arguments have converged on a similar sentiment. We live in a society in which we nobly aim to promote acceptance of diverse groups. Genetic testing undermines that aim, the argument goes, for it sends an intrinsically offensive message that the lives of people with disabilities are less valuable. As bioethicist Adrienne Asch opined, “As with discrimination more generally, with prenatal diagnosis, a single trait stands in for the whole…. The test sends the message that there’s no need to find out about the rest.” More recently, the New Zealand claimants agree: “The screening programme… devalues children with Down syndrome and is offensive to parents.” Allowing or even encouraging selective abortion based on a single “undesirable” trait is discriminatory, and it should be condemned when directed toward a fetus just as it is when targeting those who have already been born.

Genetic counselors have apparently done little to ease this concern. Counselors and the disability community have a “tenuous relationship,” claims one recent article, in which counselors often hold more negative perspectives on disability than those who are directly affected. These attitudes influence how counselors communicate with patients about prenatal decisions, causing disabled people to feel judged in clinical settings. Adding to the shaky trust is the fact that the National Society of Genetic Counselors, which represents the profession in the United States, has publicly connected itself more with abortion service providers than with disease advocacy organizations.

Doctors are not sporting spotless images either. One analysis concluded that written materials about prenatal screening are often insufficient, and the limitations of testing are not adequately explained. The latter shortcoming is especially problematic in genetics, where testing is probabilistic by nature and thus demands a nuanced explanation to be accurate. Unfortunately, a whopping 45 percent of obstetric fellows say their training on how to deliver a prenatal diagnosis is “barely adequate” or “nonexistent.”

Still, the critique of discrimination relies on an assumption: an attitude toward a diagnosis in a fetus, particularly one’s own fetus, represents an attitude toward an existing person. And social science research shows this may not be true. One discerning study surveyed 197 pregnant women about their beliefs on testing for Down syndrome in their own fetuses along with their attitudes toward the Down syndrome community at large. While unfavorable attitudes toward people with Down syndrome did indeed correlate with the women’s intentions to screen, favorable attitudes toward people with Down syndrome could not predict whether screening would be used. That is, many women who expressed positive attitudes toward the Down syndrome community still wanted to test their own prospective children.

The authors explain this result by pointing to previous research showing that people often make clear mental distinctions between people with a disability who are already born and those yet to be born. As a result, it is perfectly compatible to respect those with Down syndrome while hoping to have a baby without it. One sociologist has dubbed this two-fold position “important to test, important to support.”

Which brings up another big flaw in the testing-is-discrimination rebuke: it puts extraordinary pressure on any given person. Who doesn’t want a healthy baby? A parent’s priority is cultivating the best possible life and opportunities for their children. Asking her to forgo valuable disease testing for the sake of expressing a socially appealing message is making a child into a sacrificial lamb. Some take this argument even farther, saying that prenatal disease testing is not just something parents should do, but rather an ethical obligation. It would be negligent not to screen for genetic diseases if the opportunity to do so existed.

A similar case can be made for nonmedical traits. Want to screen for height genes? For whatever reason, studies have shown that taller people in both genders reach more leadership positions and make more money—an extra $1,000 a year or so—even after factoring out experience and education. And who says it has to end there? We could then open ourselves to the really contentious issue of favoring males because of the regrettable realities of a sexist world. The bottom line being: You can hardly fault a parent for wanting to optimize her child’s social lot. Don’t hate the player; hate the game.

But that doesn’t render the original grievance invalid. Live in a world where everyone acts in his own best interest, and the result could be the so-called “tragedy of the commons” situation, where the group as a whole loses. A powerful example is the selective abortion of female fetuses in India and China, which has caused a noticeably skewed gender ratio leading to a surplus of bachelors unable to find brides. In societies that value marriage as a staple of social acceptance, officials fear an increase in crime by the new male “outcast” group, greater use of the sex industry, and even an increase in the kidnapping of women. Extreme cases like this demonstrate that it can’t be on the shoulders of individuals to do the right thing for society at large. It becomes the law’s responsibility to step in and regulate whatever it is that would damage things for all of us.

This clash in priorities, with the competing interests of parental freedom on one hand and our antipathy toward intolerance (with a worst case scenario of dangerous social ills) on the other, is where the debate often comes to a halt. Both are important values, and saying one overrides the other is a matter of personal inclination.

But maybe there’s a way around taking a blanket stance to support either side. It involves acknowledging that that not all traits are created equal—at least not for prenatal testing purposes. Screening is morally acceptable for some but not others. A clever idea for making that distinction comes from Sara Goering, who uses the values of philosopher John Rawls to distinguish between morally acceptable and objectionable forms of genetic engineering (actually manipulating a fetus’s genome to give it preferred traits, rather than simply testing for what is already there). Some traits are inherently good, she says, regardless of environment. Other traits are only deemed valuable because of subjective prejudices that vary based on your time and place in the world. She gives the examples of cystic fibrosis and Tay-Sachs disease as belonging to the first category and race, height, and sexual preference in the second. Using science to our benefit while rejecting discrimination would involve engineering only those qualities in the first group, she argues. Otherwise, we would be exacerbating arbitrary bias, making us complicit in an unjust system.

An obvious interpretation of Goering’s ideas with regard to testing is drawing the line between medical and nonmedical traits. Based on the unfortunate mental and physical confines of disease, good health can be seen as an objective way of having a better life. In contrast, tallness as better is a societal construct. There is no intrinsic benefit of being tall (maybe they can reach higher things; but they also are worse at escaping notice). Rather than yielding to these prejudices, we should be striving to rectify the existing injustices.

Of course, this is not a perfect science. There is bound to be enormous disagreement over objective versus subjective good. Just look at the dispute over deafness. While most people view hearing loss as a disability, there are those in deaf community who see it as a lifestyle that they want to share with their children.

Realistically, much of this theoretical handwringing may prove moot. Are our prejudices so overpowering that we’d pick abortion over a child with the “wrong” height or eye color? Some people would undoubtedly favor testing without even considering abortion, but rather to prepare better for the baby. Others would opt not to know at all. Characterizing these preferences would require further empirical investigations, and there would surely be very different considerations in societies where biases are more engrained. But intuitively, at least in the United States, it is hard to picture large masses of people opting for prenatal testing of traits like eye color as the deciding factor for whether their child should be born.

This is a passionate issue. People have begun to speak out, whether through semianonymous Internet comments or an official complaint to the International Criminal Court. The concerns are legitimate. Detractors do not need “what if?” slippery slope arguments, often accompanied by references to science fiction, to vindicate their objections. They also do not need emotionally charged analogies to heinous past crimes of eugenics to grant them credibility. There are issues in science that have become so entwined with politics—where people split along predictable party lines, and a presumed clash of values automatically demonizes any opposing view—that open discourse is vetoed before it can begin. Making moral headway in prenatal testing requires that it doesn’t join those ranks.

There is something to be said for following our moral intuitions. There is even more to be said for a rational analysis of their validity, for an informed and respectful exchange of ideas.

The second pregnancy could not have gone worse. Though she showed all the telltale signs and felt as though she was carrying a child, the four tests were consistent: No pregnancy. No pregnancy. No pregnancy. No pregnancy.

He knew the couple would be devastated. Mom’s tears showed he was right.

It was only midway through the D and C to clean out her uterus that Dr. David Hilfiker came to the horrifying realization that the fetus inside had been alive.

***

A story like this could destroy a doctor’s career. Editors at the New England of Medicine, the place where it was submitted, understood this well. That’s why one of them called Hilfiker in the fall of 1983 to make sure he still wanted to go through with it. He did, and it was published in 1984.

Why did he do it? Why tell this story publicly, risking his practice and his reputation?

The case was deeply disturbing. But perhaps one of the most disturbing parts was that it was not unique. Hilfiker goes on in the piece to tell tales of other errors, from the severe to the more mundane. A boy whom he diagnosed with a dislocated foot but who actually had a severe case of compartment syndrome that required immediate surgery. A woman with chest pains whom he advised not to go to the emergency room, and who twenty minutes later went into cardiac arrest and died. Unnecessary hospital admissions that waste money and resources.

Given the number of decisions doctors make on a daily basis, he said, errors are inevitable. The problem is that there is no forum to talk about them.

“The medical profession simply seems to have no place for its mistakes. There is no permission given to talk about errors, no way of venting emotional responses. Indeed, one would almost think that mistakes are in the same category as sins: it is permissible to talk about them only when they happen to other people.”

***

1984. What was the climate of medicine like?

When the piece went public, one hundred and fifty people were moved to write letters in response. But according to Hilfiker, among those only two were negative, questioning his ability as a doctor. The rest – many of them from other caregivers – expressed feelings of identification, of sympathy, and of praise. Letters from around the nation thanked Hilfiker for speaking out about something that was universally experienced but that never dared to be uttered.

Then there were others. In the moving piece “The day Joy died,” Dr. Gary P. Brandeland speaks of the painful aftermath of a 1986 incident when a 21-year-old patient of his died because of an anesthesia mistake.

“For months afterward, I felt like I was being beaten with a baseball bat, physically and emotionally. Out of the 52 doctors in our clinic, only one, an ophthalmologist, asked me how I was doing. For everyone else, it was business as usual. This lack of support from colleagues was a surprise and a huge disappointment. I was treated like some kind of disease they might catch.”

Another, a reflection piece by a doctor who trained in the 1980s and who preferred to remain anonymous:

“Early in our training we learned that doctors had a higher instance of alcoholism, drug abuse, suicide, marriage, break up and a lower life expectancy than the general population. In sharp contrast to other at risk groups, we were not offered any strategies to deal with these risks – it seemed that it was up to me.”

Common themes are not difficult to find: a culture of expected perfection; no room to be open about mistakes; and the healing of physicians ignored.

***

Since the 1980s, there have been big movements in both reducing the number of errors doctors make and disclosing them to patients when they happen anyway. Things like checklists and electronic health records may accomplish the former, while research showing that the risk of litigation actually decreases with increasing disclosure encourages the latter. In 1999, the Institute of Medicine released “To Err is Human: Building A Safer Health System,” which formulated specific recommendations for cutting down on preventable adverse events.

But there still remains the next step: a doctor recovering for him or herself.

We certainly ought to focus on reducing errors. But no matter how great the strides, mistakes will never vanish completely. Errors do not have to stem from gaps in competence to have consequences. Being tired or careless can lead to devastating outcomes. But so too can taking risks to help a patient.

“Don’t expect to be perfect,” an older doctor once advised me soberly. For doctors-in-training, the idea that we could someday be responsible for a major injury or death is an unbearable thought. We study hard and hope that will be enough. But we know in the back of our minds that it doesn’t work that way.

We can’t expect to never make mistakes. We can only prepare for how we will grapple with them.

***

2012.

When I first read Hilfiker’s piece, I had two main reactions. One was appreciating the genuine and courageous character that shone through his writing. Two was thinking how foreign his world felt.

A few months ago, I wrote about a challenging patient encounter I experienced as a first-year medical student. I walked into a room on a general medicine ward and ended up in an emotional minefield I felt unequipped to navigate. My patient desperately needed help, but it was help I couldn’t provide. I left shaken, worried that my visit had done more harm than good.

When I reported the case to my three preceptors, they were just as interested in how I was holding up emotionally as in how well I had gathered my patient’s history of present illness. Each had words of wisdom on how to bounce back after an incident like that. I was able to discuss things I felt I did right and others I felt I did wrong. I received feedback on how to improve, without feeling judged.

The relationship went both ways. One time one of our preceptors told us about a difficult patient situation of her own that was causing her guilt, and she welcomed our thoughts on grappling with it. We were in a safe space that focused on improvement over perfection and that encouraged us to embrace our emotional impulses.

You could argue that as a student, I am expected to make mistakes, and that the “yoke of perfection” Hilfiker talks of does not yet apply to me. You could also argue that my experiences with these doctors are not universal, and that for every caregiver who welcomes the expression of emotions there remain others who eschew it as a sign of weakness. All this would be true.

But from my limited experiences in settings of care so far, there seems to a shift in climate away from what Hilfiker bemoaned. It is certainly not absolute. But we recognize today that doctors are human beings with feelings: feelings that will be damaged when things go wrong, and feelings that need outlets for healthy processing and healing. We recognize that we should be cultivating that type of openness, not stifling it. My education reflects that awareness. As patient safety activist Linda K. Kenney captured the change:

“Back in 2002, a literature search on physician/clinician support would turn up very little. Today, that same search would yield a tremendous amount on the subject. Physicians are more willing to speak more publicly about the emotional impact of these events.”

I am grateful that “how are you feeling?” is a question not just for patients anymore. And I hope it continues.

Because one day, I may make an error that falls in the category of more than mundane. I am terrified for that day. But if it comes, I pray I will be in an environment that cares for me so that I may be strong enough to care for the one I hurt, for my other patients – and for myself.

That raises the question: what’s the next step? That is, suppose a researcher feels that stratifying her data by race would provide benefits for patient care. Then what? How should she write about race in medicine responsibly?

I would like to share a paper that addressed this exact question. In 2003, Judith B. Kaplan and Trude Bennett published a paper in JAMA that came up with seven thoughtful guidelines for writing about race in biomedical research. (I’m afraid you cannot access the entire paper without a subscription to JAMA, but I am including their conclusions here.)

“1. When race/ethnicity is used as a study variable, the reason for its use should be specified.”

This first guideline aligns with what I recommended in my last post. As the authors put it, the danger of using race without explanation is that it suggests it as a natural way of categorizing people.

“2. In citing race/ethnicity data from any source, authors should describe the way in which individuals were assigned to racial/ethnic categories. If racial/ ethnic identification was self-reported, authors should specify whether individuals answered an open-ended question or chose from a fixed set of categories.”

The way questions are phrased impacts results. The authors write, for example, that when individuals choose from a fixed set of categories, they may not identify with any of the choices. If these individuals mark something only for lack of a better option, it can skew results. Moreover, the authors explain that response choices differ across studies, making it difficult to compare results. Clarity of methods can help with this problem.

“3. Race/ethnicity should not be used as a proxy for genetic variation. Statements about genetic differences should be supported by evidence from gene studies. Genetic hypotheses should be firmly grounded in existing evidence, clearly stated, and rigorously tested.”

Differences among races could be due to many reasons: shared ancestry, socioeconomic status, cultural differences, and discrimination are just a few. Because we as a society still have a tendency to think “Aha! It’s biology!” when differences between groups are shown, the authors should make clear that racial differences alone say nothing about genetic differences; the only way to say anything about genetic differences is – unsurprisingly – genetics.

“4. In stating hypotheses and describing study results, authors should distinguish between race/ethnicity as a risk factor and race/ethnicity as a risk marker.”

While even epidemiologists disagree about the exact definitions of these terms, one way to see it is this: a risk marker tells about correlation, while a risk factor implies causation. Thus, if race is statistically associated with an outcome but does not play a role in the causal pathway, it is important to classify it as a marker.

“5. In the interpretation of racial/ethnic differences, all conceptually relevant factors should be  considered, including racism and discrimination, [socioeconomic status] SES, social class, personal or family wealth, environmental exposures, insurance status, age, diet and nutrition, health beliefs and practices, educational level language spoken, religion, tribal affiliation, country of birth parents’ country of birth, length of time in the country of residence and place of residence.”

This guideline and the following one are related to guideline 3; there are many reasons differences among racial or ethnic groups might be uncovered. This guideline is critical because without considering all these variables, a paper might send the message that the differences uncovered are due to biology. Not only would this be inaccurate, it could also overshadow disparities in environment that warrant our attention.

“6. Because lack of adjustment for [socioeconomic status] SES or social class is the most important potential source of bias in studies of racial/ethnic differences, researchers should make every effort to adjust for conceptually relevant measures of SES or social class when comparing racial/ethnic groups. Unadjusted findings should be clearly labeled as such, and in general they should be reported in conjunction with adjusted findings for comparison purposes.”

It’s challenging to adjust for all relevant variables. But researchers have an obligation to be as comprehensive as possible – especially for factors (like socioeconomic status) that are recurring sources of bias.

“7. In describing racial/ethnic groups, authors should use terminology that is not stigmatizing, does not reflect unscientific classification systems, and does not imply that race/ethnicity is an inherent, immutable attribute of an individual.”

The authors give an example of using the term “Asian” instead of “Oriental” or “Asiatic.” In addition to discouraging stigmatizing terms, they also discourage terminology that is overly broad.

***

The bottom line? Be comprehensive; be as precise as possible; be respectful. I applaud and thank the authors for these guidelines. The ultimate goal of medical research is to help patients. In the discussion over whether there is a place for race in doing so, it would help all sides to make their cases with such care.

(Reference: Kaplan JB, Bennett T. Use of race and ethnicity in biomedical publication. JAMA 2003; 289(20): 2709–16.)

It’s so ubiquitous that it’s easy to take for granted as justified. But the use of race in medicine is a subject that is vigorously debated. Whenever a new study comes out stratifying results by race, there are inevitably supporters and critics.

The question under debate: is there a place for race in medicine?

There’s a growing number who say we should toss this way of thinking entirely. Many scholars now contend that race is closer to a social construct than a biological category, and there’s the legitimate fear that pointing out differences between races sends the message that the difference is biological. Even if there are certain genetic differences among populations, we know that self-reported race is at best a crude proxy for indicating them. Moreover, studies often do not adjust for all other variables besides genetics, such as socioeconomic status, culture, and discrimination – meaning if differences are shown, the knee-jerk tendency to think biology might overshadow important environmental disparities that deserve our attention. There are social concerns too, in that historically ethnicity in research has been abused by pseudoscientists with racist agendas of demonstrating the superiority of certain people over others. In light of that history, profound sensitivity toward using race as a variable in medicine is understandable and warranted.

Part of the problem may be that some simply do not give it enough thought. There are some who stratify any data they collect on any health-related subject by race because that’s what others did before them, along with others before that. But when you do any data analysis, you need to justify its being done. There’s no such thing as just “laying out the facts” because there is no such thing as a predetermined set of facts that we either expose or hide. We make choices with everything. Collecting, breaking down, and representing data all involve choices. When comparing groups, we can draw the lines wherever we want. Telling of this point is that many studies that talk about race still only compare blacks to whites, ignoring all other groups along with cases of mixed ancestry.

When the choice lies with the researcher, she has an obligation to use it responsibly. As such, it’s not enough to enough to justify a project with some ambiguous version of: “this will contribute to the literature by showing something we do not know.” We don’t know infinite numbers of things. Research has to have value. At the forefront of every decision should be the questions: What’s the point? Are the differences I’m trying to show relevant to anything? Are there implications for disease prevention, diagnosis, management, or treatment?

Sometimes, indeed the answer is yes. There have been cases where thinking about race, even as a rough guide, have led to benefits for patients. Knowing that sickle cell anemia is more prevalent among populations of sub-Saharan African ancestry can tip physicians off for earlier and thereby more effective diagnosis and management. Since Tay-Sachs is a genetic disease with increased prevalence among Ashkenazi Jews, Jewish communities early on welcomed genetic testing for prospective parents and by doing so dramatically reduced the incidence of the disease. Individuals of Asian descent are more likely to carry certain genetic polymorphisms resulting in slower drug metabolism – meaning patients need lower doses to achieve the desired effects and avoid toxicity. There are many more examples. While it is such an important point that I’ll say it again – that race is only a very imperfect proxy for genetics – there has been demonstrated medical value in being aware of these trends.

The reason is that medicine is a field that uses heuristics – simple “rules of thumb” that help home in on best guesses when comprehensive searches are not feasible. These shortcuts are so frequently employed because medicine is the perfect storm of information overload combined with limited time. Best guesses in medicine are probabilistic; doctors collect clues from various sources to select more likely and less likely options. Every test, every new piece of information contributes to that ranking. Thus, some argue that just as doctors clue into best guesses based on a patient’s constellation of symptoms and test results, so too can race be used as an approximate guide. With the recognition that heuristics can lead to biases, the solution is not to discard them but rather to make doctors more cognizant of biases so they can work to eliminate them and use heuristics more effectively.

The use of race in medicine is a deeply sensitive issue and should be treated as such. One thing to note is that in contrast to shameful periods in history that focused on race with unethical agendas, the vast majority of current research is completely well-intentioned, toward the goal of optimally tailoring medical care to a diverse patient population. Those on both extremes of the debate are looking out for patients. So where does that leave us? While there is a place for race in medicine, the literature also remains rife with studies with seem to point out differences with no valid reason for pointing out differences, and my sense is that there’s a greater tendency to overuse race when it’s not appropriate than to neglect it when it is. The burden should be on every medical researcher who wants to talk about race to be explicit as to what contribution this data would make to the world. And, if those measures fail, it would behoove readers and patients to apply just as critical an eye.

It did not go over well. I remember perceiving him as defensive in response to my questions. It was as though he assumed I had an agenda, and he was trying to break opinions I didn’t actually hold. It became exhausting quickly. I wasn’t trying to argue a point; I was trying to learn.

Partaking in many discussions about science since then, I now know that my experience was far from unique. There are certain subjects in science that have made it into the public spotlight as hot-button political issues. In addition to climate change, for example, candidates are asked about their positions on evolution and vaccines. Overall, politicians talking more about science is a good thing. But in politics, a particular type of discourse dominates. The world of politics is inherently antagonistic, where one candidate needs to beat another, and the language follows suit. To make their positions easier to digest and remember, politicians tend to dichotomize issues: one candidate adopts the pro-something position, while the other is anti. It’s a world where nuance is at best not appreciated and at worst frowned upon, and where changing your mind in the face of new evidence is criticized as a sign of weakness.

Even if not ideal, all that is understandable for politics. But the problem is that as scientific subjects join those ranks, the antagonistic nature of political discourse has infiltrated elsewhere. Into classrooms. Into labs. Into our everyday discussions with one another.  It has become difficult to talk about those topics in science without viewpoints seeming immediately split: there are the enlightened ones and the less enlightened ones, where the goal is for the former to educate the latter. Conversations are loaded. Questions are treated with suspicion. More and more people who care about science, like that grad student, seem constantly braced against a presumed opponent with an agenda – an opponent who needs to be taken down. We debate instead of discuss.

That mentality just doesn’t work in science. Those who are new to a subject are intimidated from asking questions and afraid to disagree. Rather than reason through ideas themselves, they are pressured into accepting conclusions presented as settled and thereby indisputable. But the thing is, nearly everything in science is disputable. The nature of discovery means trying to find the absolute truth – and exposing inconsistencies, thinking through how to reconcile them, and critically analyzing data are all ways to get there. We can’t get very far when curiosity and open inquiry – the hallmarks of good science – are stifled. We are touting the bottom line while discouraging the very steps of the scientific method that get us there.

What we have to realize is that science and politics have fundamentally different goals, and it’s damaging to conflate them. In politics, the aim is to convince others that you are right. Scientists, ideally, should be seeking objective truths. To do so, they need to be receptive to dissent and open to the possibility of being wrong. Science thrives when diverse ways of thinking are welcome.

Pundits talk as though being skeptical is akin to being “anti-science.” But anti-science is a political idea, not a scientific one. The only way to be anti-science in science is to have a closed mind.

I know: it’s easy to feel frustrated with the real political forces that are in the business of denying data. Hearing about their influence on a regular basis is bound to evoke some reaction. But I’m afraid that in our efforts to combat them, we’ve gone too far in the other direction. Let’s give one another more credit, and assume that the person you are talking to about science – especially if you’re in a teaching position – is not a stooge of a political denial industry, but a reasonable individual who wants to learn. If the culture of scientific discourse has been distorted, it’s in our power to get it back.

Because if we don’t? That would be how anti-science wins.

In September 2011, researchers surveyed 1,232 medical students at ten schools across the nation about their opinions on the Affordable Care Act (ACA). Four out of five students (80.1%) indicated their support. Meanwhile, the American Medical Student Association has officially and emphatically voiced its support of the ACA and celebrated the Supreme Court decision that upheld it.

Why the overwhelming support? Let’s run through some possibilities.

1. Do medical students believe the ACA will improve quality of care? Surveyors asked students to agree or disagree with the following statement: “The PPACA will improve health care quality.” Only 31.4% agreed. The rest disagreed (20.9%) or were undecided (47.7%).

2. Do medical students believe the ACA will contain costs? Here, a mere 18.6% of students agreed. Nearly double (36.0%) disagreed, while the remaining 45.4% were undecided.

3. Do medical students believe the ACA will expand access? Here’s where the answers shifted dramatically. Slightly over two out of three students (67.6%) agreed, compared to only 6.5% disagreeing and 25.9% remaining undecided. That means students were over twice as likely to believe the ACA will expand access as they were to believe it will improve quality of care, and over 3.5 times as likely to believe this statement than the one on cost containment.

Finally, there’s a less obvious option.

4. Do medical students feel they should support reform, without good reason? Surprisingly, only a little over half (53.9%) said they understood the major provisions of the ACA. Meanwhile, nearly a third (30.2%) felt they did not understand, while 15.9% were undecided.

That last finding raises an interesting question. How can four out of five students be in favor of something if only half understand what it’s about? The same critique can go in the other direction; it would be just as silly to oppose something one doesn’t understand as it would be to support it. Part of the discrepancy could be due to a bug in the survey design. When the authors asked about support for the ACA, they did not offer an “undecided” answer – meaning if there were those who didn’t want to take a stance because they felt they didn’t sufficiently understand the provisions, there was no place to express it. However, there was an undecided option in response to the statement “The American health care system as it exists today needs to be reformed.” Very, very few marked it. Rather, 94.8% agreed.

Taken together, these stats hint at a possibility that some students may be driven by a fervent reform desire to support any action forward, even if they are not completely clear on the details of what that action will entail. Before we come down too harshly on them, it is worth noting that others have applauded the idea of taking action, even in the face of uncertainty. As Atul Gawande put it:

“The reality of trying to solve a wicked problem [like health care] is that action of any kind presents risks and uncertainties. Yet so does inaction. All that leaders can do is weigh the possibilities as best they can and find a way forward. They must want to make the effort, however. That’s a key factor.”

But that’s not to say there isn’t a problem. There is a difference between accepting uncertainty of outcome and not knowing what the provisions state in the first place, and we would hope, of course, that those going into the medical profession would be knowledgeable about the terms of the policies they will soon be practicing under. Yet the study showed that medical students are surprisingly on par with the rest of the U.S. population in terms of understanding the provisions of the ACA. As a result, some are calling for more education in health policy. My school is somewhat unique in that all first-years take a required course in the subject, but we are not the norm. In the absence of formal education, medical students tend to get their information the same ways everyone else does – through media coverage, blogging, and other forms of personal information seeking.

So why do most medical students, at least the ones surveyed here, support the ACA? The results suggest that the issue of access to care provides stronger grounds for support than issues of quality and cost containment. But we also can’t rule out the troubling possibility that some might not have a good reason at all.

I opened my mouth to answer but quickly stopped myself. Telling her I was twenty-two, I realized, would not come across as much more comforting.

“Ilana is very good at this,” my phlebotomy instructor said, coming to my defense.

My patient continued to look skeptical. We started talking, and I learned she was fifty years old and had a phobia of needles. It was one she had all her life. There were points when her anxiety about it became so bad that she skipped recommended check-ups.

I tried to reassure her. I explained exactly what the (very short) procedure would entail – a tourniquet, an alcohol wipe, a tiny prick, a Band-Aid, and it’s over. I showed her the butterfly needle I would be using. I showed her the one vial that would collect the blood. I tried to make each step sound as non-frightening as possible. She nodded along.

The bigger challenge was convincing her of my competence.

“But will you get the vein?” she asked? “Sometimes they miss, and I can’t stand that, I just can’t.”

I told her that while I couldn’t make any promises, I had done this many times before, and it was very unlikely that I’d miss.

After a few more comforting words from my end, she grudgingly stuck out her am and looked away, covering her eyes with her free hand. I held her wrist to steady her shaking arm and carefully made a gentle poke.

Unfortunately, the tiny flash of blood I was so used to seeing didn’t show.

***

It was my year off between college and medical school, and I was working as a clinical research assistant at a military hospital. One of our studies involved collecting patients’ blood for genetic analyses. Fortunately for me, the phlebotomists at the hospital were happy to train me.

I needed fifty successful sticks to be able to do them on my own, without supervision. After watching an instructional video and practicing on a dummy, the phlebotomists I would be working with each generously offered me an arm (or two). I had maybe four or five successful blood draws under my belt, and one or two failed attempts.

All of this started at 7 AM. By 10, my instructor said:

“This will be your station. It’s already set up with needles, tourniquet, alcohol wipes, gauze.”

I looked at them dumbly. “Oh! So I’m going to do this on real patients now?”

I can’t imagine what else I expected to happen. In a few hours, I had exhausted all my training resources; this was the natural next step. But the thought of unleashing my inexperienced hands on unsuspecting patients filled me with apprehension.

“You’ll be fine,” my instructor said.

***

Doctors use their minds and hands. They think through problems, and they perform procedures. What makes medicine different from other hands-on professions is that the recipients of the procedures are human beings. How can there be an ethical way to practice?

The answer used to be live animals. Before the 1980s, surgeons-in-training practiced on live dogs. They then switched to pigs, which were believed less likely to incite protests from animal rights activists. They were wrong. In 1994, 77 out of 125 medical schools in the U.S. practiced live animal surgeries. By 2011, only seven remained. Many medical schools cited the draw of new, better techniques as the reason for the decline, but it’s hard to deny the influence of lawsuits and bad press, too.

Today, the big thing is electronic mannequins, which look and behave strikingly similar to real patients. They ask for help. They tell you when it hurts. Place a stethoscope over them, and you can hear heart and lung sounds. There are even ones who give birth. A 2011 survey by the Association of American Medical Colleges found that over 90% of 89 medical schools that responded used mannequins in their teaching.

And they are indeed memorable. My first experience with a simulator was my very first week of medical school. He came to the fictitious emergency room complaining of chest pain. A group of us huddled awkwardly around him, asking him questions about when it started, what he had been doing, and what his other symptoms were. When we exhausted our questions, we ordered a chest X-ray. Meanwhile, his blood pressure began dropping dangerously fast. “I’m not feeling so well docs…” he kept saying breathlessly. Unsure what to do, we stood around even more clumsily, telling him we were working on it but actually watching him die, clueless on how to stop it.

No doubt, the technology is a tremendous help in easing us from textbooks to people. But no matter how much we practice on the non-human, there will inevitably come a time when the next step is a living, breathing person. There is no way around it.

***

When the flash of blood didn’t show, I looked at my patient’s face. Relieved to see she was still shielding her eyes, I delicately began to move the needle around under her skin, searching for the vein that had rolled. I didn’t want to have to stick her again. I needed to get it before she noticed.

I failed. “Why is isn’t it over yet?” she asked, and at that moment looked over. I was bent over her arm, maneuvering the needle.

“Get it out!” she cried.

***

How do medical students decide when to keep trying, and when to quit, after a botched attempt?

In 1993 two medical students at the University of Pennsylvania surveyed third-year students about ethical dilemmas they faced on the wards. One recurrent problem involved performing procedures the students felt unequipped to handle.

“I was on call with an intern who was inundated with admissions,” one student wrote. “She asked me to see a patient and insert his intravenous catheter. After two unsuccessful attempts, the increasingly irritated patient snapped, ‘Do you know what you’re doing?’ I thought to myself: Should I try again?”

In similar situations, the authors noticed, students’ internal guidelines for when to quit varied widely. Some operated according to the principle “try, try again”; others “weighed their chances of success against the patient’s discomfort”; and still others “admitted that their decisions were based in part on how they thought the residents would react… including how it might affect their evaluations.”

The familiarity of these stories, nearly two decades after they were collected, is telling. Despite the near universality of the ethical dilemma, there exist no clear standards on how to behave appropriately in such situations. Compounding the problem is that different teaching hospitals vary in their cultures and expectations from students.

We like to think that moral deliberations are done thoughtfully and judiciously, but the reality is that outside influences play a role. Fear of looking bad in front of superiors, the desire to be seen as a team player, and the need for good grades are all factors that calculate into students’ reasoning.

Medicine involves teams. It involves hierarchies. Medical students answer to residents who answer to attendings. A side effect of this system can be influenced moral decision-making.

***

My phlebotomy instructor took over, while I stood back and watched. I felt clumsy and useless, just like I would a few months later when I would helplessly watch my first mannequin flatline.

When it was over, the patient shot me one more dirty look and left, cursing under her breath and massaging her arm.

I felt ashamed – not so much that I missed her vein, but that I worked so hard to convince her it wouldn’t happen. How much of that was honest? And if she was so afraid, why didn’t I just let my more adept instructor do it in the first place?

Probing why I acted the way I did, I later realized it was a combination of things. At the time, in my head, having done thirty or so needle sticks before her did feel like a lot. As my successes had grown, so had my confidence. I was even more egged on my by instructor’s praise. When she said, “Ilana is very good at this,” I was flattered, so I wanted to believe she meant it. When I said it was unlikely that I’d miss, I wanted to think, for my own ego’s sake, that it was true.

And – even though I wasn’t being graded or evaluated – I was, like the other students, spurred by the subtler pressures of wanting to look good. My instructor seemed to respect me, and I was eager to maintain her respect. I didn’t want to seem dependent, having to call for backup whenever I had a difficult patient.

I exaggerated my competence in my eagerness to be competent.

***

Interestingly, others probably would have defended me. There are medical professionals who have contended that exaggeration is a necessity of training, and they are upfront in telling this to the public.

Surgeon Atul Gawande called it the “physician’s dodge” and famously argued that it is inevitable.

“Do we ever tell patients that, because we are still new at something, their risks will inevitably be higher, and that they’d likely do better with doctors who are more experienced? Do we ever say that we need them to agree to it anyway? I’ve never seen it. Given the stakes, who in his right mind would agree to be practiced upon?”

Oncology nurse Theresa Brown backed this up in the New York Times.

“We don’t usually tell patients when we are practicing on them because it makes them hesitant and nervous, but they often figure it out anyway. If they ask, we don’t lie, but we try to answer in a way that puts them at ease.”

But patients have a different perspective. The most popular commenters on Ms. Brown’s article, for instance, were not pleased.

“I am perfectly willing to be a guinea pig for many routine medical procedures that demand training, including drawing blood. And I have never refused to have a medical student present in an examination. But that willingness stops when medical professionals are not honest about what they are doing.”

And who can blame them?

***

I realize that drawing blood from a patient’s arm is about as simple as it’s going to get. Phlebotomy is one of the most routine invasive procedures, risking comparatively little harm if done incorrectly. If the choices on the two ends of the spectrum are complete honesty and forging ahead by concealing inexperience, with phlebotomy we can safely practice the former. For as the comments on Ms. Brown’s piece indicated, even if one patient says no, there will be many others who say sure, go ahead and practice on me. To the patients who are generous with their arms and their willingness, I thank you.

But my near future tells of intubations and central venous lines. The question of transparency will only magnify. If my plan going into it is complete honesty, I can easily envision a situation where every patient – quite reasonably – refuses to be practiced upon. Then what?

Everyone in the medical profession goes through this. Even if they practiced on simulators first – even if they worked under close supervision – everyone had a first patient, and a second, and a third. That holds for every doctor, every surgeon, every nurse, from the simplest to the most risky procedures.

But how to handle it remains unwritten. While I’m sure there are a few who err toward complete openness with patients, most seem to be of the opinion that if they did, no one would get trained. Instead, they use verbal sleight, but not outright lies, to persuade a patient of their competence and obtain consent.

Making patients feel comfortable and reassured is a priority. Instructors over-emphasize trainees’ skills, and trainees go along with it. They make errors, and through doing so improve for the next patient. And the cycle continues.

I understand. It makes sense. But as I enter the world of training myself, understanding why the unspoken rules are the way they are does not ease a guilty conscience.

Because at the end of the day, I find myself with two facts. One is that for serious procedures, no one would agree to be practiced upon if asked. Two is that every new doctor-in-training must learn to perform them. Being sympathetic to both sides has not helped me reconcile them.

(Certain details of this story have been modified slightly to protect the privacy of the patient.)

(Image obtained from Wikimedia Commons)

In medical school, we talk in terms of “high yield” and “low yield” information. Basically, everyone accepts that it is impossible to know everything or even close to it, so medical school becomes an exercise in figuring out what is most important. For every conversation about memorizing, there are also a couple of self-deprecating quips about forgetting. I’ve had times where I studied something, took a short break, and then forgot what I was just reading. Is it sad? Yes. Demoralizing? Can be. But unique? Talking to other medical students, I’ve found the answer is a resounding no. The consensus on memorization among my peers is comically Lake Wobegon in reverse: here, everyone is convinced (s)he is below average.

Are we inherently bad at memorizing? Are we just not programmed to be effective at learning everything the modern medical landscape demands from us? I wondered about that. But more so, I wondered about solutions. If we ask for help, most of us rely on casual tips from those who have gone through the process before us, and we try to assemble diverse anecdotes into a feasible personal plan. But research into the human mind and its ability to remember is vast. And that knowledge says that memorization is a skill that can be improved upon with strategy and practice.

What of that knowledge can apply to medical training, specifically? Which techniques can help information stick – in ways that are meaningful, relevant, and ultimately useful for patient care?

***

Chunking. Our short-term memory can store and retrieve a limited number of facts – and researchers have honed in that number. In 1956, cognitive psychologist George Miller published a paper providing evidence for seven being the magic number, plus or minus two. It was one of the most widely cited psychology papers ever, and Miller’s figures are ones that many in modern psychology circles still go by. What does that mean if you want to remember more than seven items? The solution involves breaking down – or “chunking” – larger sequences into smaller ones. For example, if you want to remember the ten digit sequence 6256493174, you could instead think of it as 6, 256, 493, 174. Or 62, 56, 49, 31, 74. Or some other combination, as long as it’s in a retainable number of chunks.

We remember “chunks” better than long sequences. In medicine, chunking is really a way of saying simplify and organize.

Does it work? In medicine, we constantly need to remember facts that relate to a particular umbrella subject. Chunking is useful as a guide in keeping relevant concepts together, within a range that is ideal for memorization. I know, for example, that if I am trying to remember bacteria, it helps to classify them into groups – with each group containing facts of nine or fewer items. In that sense, perhaps chunking is little more than a fancy way of saying organizing – with the additional recommendation of what size you should organize subjects into to increase your chances of retaining.

One issue is that chunking refers to a technique for short-term memory. In medical training, I care about knowing things for the long term. Can chunking still help? Psychologist opinion seems to say yes: chunking improves the transfer of short-term memory to long-term memory. Some have used the example of language to make this point, in that we regularly use single words or phrases to capture complex meaning and remember it in the long-term. Medicine uses similar principles. That is, whenever we have a medical term for a constellation of symptoms, a disease progression, or a type of treatment, we are actually chunking multiple concepts into a single phrase. Taken in reverse – a single medical term connotes multiple ideas. Medical language enables us to memorize better by having us memorize in chunks.

The bottom-line on the usefulness of chunking in medicine is that it’s a way of thinking consciously about something we tend to do naturally – organizing complex ideas into simpler ones. Having that conscious awareness of why condensing works can make the number of facts we are expected to learn in medicine less intimidating.

The memory palace. Picture some location you know well, such as the rooms in your house or the streets in your neighborhood. Now suppose you have to memorize a list of groceries. Start at the beginning of your location and walk forward, placing items at well-known landmarks as you go. Maybe you place a carton of milk at the foot of your stairs, a dozen eggs at the top, and a pile of apples next to the pillow on your couch. This technique is described well in Moonwalking with Einstein: The Art and Science of Remembering Everything, by Joshua Foer. The idea behind the memory palace is that we have an innate knack for remembering spatial layouts – supported by brain scans showing that spatial learning parts of the brain are used by people who win memory contests.

Does it work? Since you’re walking along a path, the memory palace works well for material that needs to be remembered in sequence. What topics in medicine might apply? Stages in a disease progression do the trick. The memory palace can also be useful in anatomy, a subject filled with order: which blood vessels branch into which, how nerves connect, and how layers of muscle and connective tissue lie – from top to bottom, front to back, and left to right. Additionally, the memory palace can be of use for lists where there is no order (such as the groceries); I would simply create a different walk for each list. In that way, any part of medicine I might “chunk” together, I could also place within a memory palace.

There are a few drawbacks. One is that the images that do the most for memory are ones that are most creative – or, as Foer puts it, most ludicrous. Crafting ludicrous images might be fun, but it is also very time consuming. Compounding the time investment is that many topics in medicine are not prone to imagery the way groceries are. Imagine biochemistry, for instance, where I am trying to remember the steps of signal transduction: Ras activates RAF, which activates MEK, which activates ERK. How can I place this alphabet soup of acronyms in my house? Since Ras comes from “rat sarcoma,” I could imagine a rat with a tumor somewhere in my house; maybe ERK reminds me of my friend Erik, so I could picture him as the last step. It can be done, but it demands imagination. As a result, I find the memory palace a good investment only for very high yield information that I need to summon over and over.

Mneumonics. Poems, acronyms, acrostics, and other types of word play fall into this category. Mneumonics are extremely common in medicine – so much so that they pepper every few pages of my review books, and that there exist entire websites devoted to them. They work because they take things that lack any sort of transparent meaning and package them in ways that resonate with subjects that are familiar in our everyday lives (example: “Some Lovers Try Positions That They Can’t Handle” resonates more than the arbitrary names of the hand bones, Scaphoid, Lunate, Triquetrum, Pisiform, Trapezium, Trapezoid, Capitate, and Hamate). Others are just catchy (to recall which nerves innervate the diaphragm, I still say the rhyme, “C3, C4, and C5 keep the diaphragm alive”). For topics where order matters, I also often find verbal mneumonics simpler than coming up with ways to place the items in the memory palace. For example, to remember the order of structures in the femoral triangle region of the thigh – nerve, artery, vein, empty space, and lymphatics – I find “NAVEL” easier to recall than attempting to mentally place those body parts around my house.

The verdict is that this is a fantastic technique that I use frequently in medical school. I will point out one downside, though, which is that speed of retrieval does matter in medicine – so if your mnemonics get too unwieldy, they are less useful. For example, imagine being on rounds, and having your attending ask you a question about the ninth cranial nerve. If you use any of these mneumonics to remember the twelve cranial nerves, and you need to go through them all to get to number nine, your answer will be slow. And that won’t look good. The consequences of slowness during actual patient care, of course, can be more dire than a damaged ego.

Be emotional. For good or bad – we remember things that make us feel. In addition to personal anecdotes, there is much research supporting the idea that emotional experiences are remembered more vividly that less emotional experiences. Brain scans, for example, show that when people store and later recall vivid memories, both the amygdala (a part of the brain involved in emotion) and the hippocampus (a part involved in memory) are at work, and those with better recollection use the emotional parts of the brain more.

When people encode vivid memories, the amygdala and hippocampus interact. Emotional memories are retrieved better than neutral ones.

Does it work? That we remember better when emotions are involved bodes well for medicine – a career in which we will be caring for human lives and thus often immersed in emotional situations. Already, I have experienced the impact of emotions on memory. I have been more successful in remembering information about illness when a patient was involved than when I was studying from a book. The details stuck because they mattered. I am comforted by the idea that my experiences with patients will be positive not only from a humanistic standpoint of providing compassionate care, but will also aid in my life-long learning to deliver quality care.

The downside is that during the first two years of medical school – when we are supposed to be learning the basics of all of medicine – our patient experiences are limited. During first year I saw patients once a week; during second year, it will be twice a week. The vast majority of my learning is from detached books. Still, we can do things to make our emotional memories work for us; I find that placing information about illness even in the context of a fictional patient is helpful. (I’ve even tried fictionally afflicting myself with diseases I am learning about – I’ve had some success there too, but to a lesser extent.)

Another downside of relying too much on emotional memory is that it can open the door for biases. For example, doctors may be more likely to diagnose a new patient with an illness they have seen recently, in a situation that emotionally stuck in their minds, even when other options they have not recently seen might be just as logical. I hope that awareness of those potential limitations in our thinking can help me work consciously and actively to avoid letting them bias my decision-making.

Repetition. Every psychology text under the sun will tell you that repeating things will help with remembering them. The second exposure to facts is easier than the first, and the third is easier than the second. While I find this extremely true, the one caveat I would point out is that simply repeating another’s words, without having an intuitive grasp of what you are saying, is not the way to make this technique work. Medicine involves a lot of rote memorization, certainly, but it also involves conceptual understanding. Saying “increased afterload leads to decreased stroke volume” over and over, without understanding the physiological steps of how and why, does little for effective memorization. More importantly, it does little for making connections and applying, which is what we really care about in medicine.

The concept map. During first year, our physiology professor drilled this one in our minds. A concept map involves writing ideas in circles and connecting them by arrows. More than one arrow can go to more than one circle, and they can represent relationships like “contributes to” or “is caused by.” It works because it enables you to piece information together in your own ways, seeing how parts of systems work together without skipping steps or making leaps. We remember things better when they make sense. And, just like I said in the repetition section, the more important benefit is that it does wonders for understanding and applying – the ultimate goal in medicine.

This one sounds obvious, but I’ll say it anyway: concept maps are useful only for conceptual understanding. The memorization involved in medicine involves a blend of conceptual understanding and rote memorization. Concept maps have helped me make sense of how the human body acts and reacts, but unfortunately does less for topics like drug names and anatomy.

Be healthy. Our bodies influence our brains. Though not all mechanisms are understood, we remember better when certain things are taken care of better: when we eat well, exercise, and get enough sleep. Unfortunately, I’d guess this is the one we are most likely to overlook in medical school. But all of these tactics are pretty convenient, in that these are things we should be striving to do anyway.

***

How much memorization should be required during medical school? That is a question up for debate, with widely mixed opinions. Some who have made it through to the other side argue that the modern system emphasizes too much, for the reality of clinical care is that you will always be looking up information. Critics also point out each of us will go into a medical specialty; so knowing everything about everything is less sensible than choosing a path earlier and focusing our learning on what we will actually be practicing. There’s also the consideration of motivation. A medical student who feels burnt out from the first two years might become a less astute, less caring physician.

Others maintain that it is important to know a lot, because even if you don’t remember everything (and you won’t), that first exposure is critical in developing an understanding of the overall landscape and how different pieces of medicine relate to one another. That is, even if you don’t remember the exact details of what you learned, you will remember that the information exists – so you will know what to look up, and how it’s relevant.

I am not nearly far along enough in my medical training to have a strong leaning one way or another. I imagine things will become clearer when I am caring for patients and can gauge what kinds of information I use on a regular basis, what I use my memory for, and what I tend to look up. There’s also the fact that the two lines of reasoning above are two ends of a spectrum – and the answer may very well lie somewhere in the middle.

When drowning in memorization, some perspective is valuable. In the end, the most challenging parts of medicine are yet to come – and they will not involve problems of memorization. The facts I am committing to memory now will be the building blocks to solve complex patient cases later. I will come across symptoms that will not fit into recognizable molds. My future will involve piecing together clues, weighing relevant and irrelevant information, proposing new ideas that are conceptually viable, and evaluating outcomes. I will have to identify and confront my own biases to try to hone in what is true, rather than what is easy, convenient, or familiar. I will have to critically evaluate my own skillsets and recognize when to ask for help, and from whom to get it. I will have to do all of this within the framework of human interaction, being constantly mindful of patients’ emotions, thoughts, and concerns. I will be treating human beings, not diseases. And that is what I am looking forward to.

In my first year physiology course, our professor gave us weekly quizzes. Each quiz was open book and open notes. Our final exam was a five-page case on a fictional patient, given to us two days in advance, where we could work in groups consulting any and all resources we had. That four-hour exam and the quizzes preceding it were the most academically challenging of anything I took first year. Our professor was preparing us, and I am grateful for the standards he held us to. Because that’s medicine, he told us: “open book, but still hard.”

(Images obtained from Wikimedia Commons)

To celebrate, we’ve decided to take a page from fantastic science writer and Discover Magazine blogger Ed Yong, who every year asks his readers: who are you?

Since I joined the blog network in February, I’ve been thrilled with the readership and comments I’ve received, whether here, over email, or through some other online portal. But sadly, most of you remain anonymous to me. It would be very helpful to hear from you and learn more about who is reading and what you think.

Here are some guiding questions, also inspired by Ed Yong and Drugmonkey. Feel free to answer as many or as few as you want, and interpret as loosely as you wish.

• Who are you? Fear not – you don’t have to tell me literally. You can sign in with a screenname, and I won’t ever know your true identity. But tell me the other stuff that makes you you. What do you do? Do you have a background in health or medicine?
• Why do you read Unofficial Prognosis? Which posts do you like? What kinds of things grab your attention, and what would you like to read more about?
• How did you find me? Twitter? Facebook? A recommendation? Reading the SciAm blogs in general? etc.

Please reply in the comments section below. If you’re not already logged in, you’ll need to register (I know, I know), but I promise, picking a username and password is not as strenuous as it sounds.

So give me a few minutes of your time? 1) Because I’d love to hear what you have to say. 2) Because if you don’t, I’ll feel lonely and sad.

I look forward to hearing from you.

Ilana

From my discussions with others, I’ve found there are two basic routes to a strong conclusion. One is by gathering as much evidence as possible, from as many angles as possible, and reasoning through ideas with a critical eye to form a decision. The other is by having a conclusion in mind first and then looking, after the fact, for evidence to support it.

In the second case, where might those preconceived conclusions come from? Perhaps they are based on what group a person identifies with: “I’m a Democrat, and most Democrats support the reform, so I probably do, too,” or “I’m a registered Republican, so I’ll probably think Obamacare is a bad idea.” Or, maybe everyone around you tends to believe one thing. Or, maybe a person whose knowledge you generally trust believes something, and it’s easier to listen to one person who has already worked it all out.

Compounding the problem is that people have a natural tendency to surround themselves with friends, coworkers, and news sources that largely confirm, rather than dispute, what they already believe. It’s simply more pleasant to interact with someone who agrees with you.

While the two routes are not so black and white, I do think it’s all too easy to fall into the second type of reasoning. And it’s much more difficult to come to a new conclusion if you’re cornered by everyone chirping in unison.

So, I decided to compile my selections for the some of the most clear, thoughtful, and diverse pieces about the Supreme Court ruling and its implications I’ve come across. Taken alone, each is insightful and well-written. Taken together, they portray health care reform issues from valuably distinct perspectives. I hope you’ll give them a read, and that you’ll power through the ones that don’t immediately resonate with your political instincts.

Because the Internet is a vast, vast space, and it’s hard to triage.

“Something Wicked This Way Comes,” by Atul Gawande, published in the New Yorker. Gawande takes a step back and captures the uncertainty in any health reform initiative – an inherently complex and “wicked” problem in which “Trade-offs are unavoidable. Unanticipated complications and benefits are both common. And opportunities to learn by trial and error are limited.” No step forward will be perfect, Gawande reminds us, but taking no action comes with its own risks. “All that leaders can do is weigh the possibilities as best they can and find a way forward.”

“Chief Justice Roberts and His Apologists,” by John Yoo, published in the Wall Street Journal. Even though the Affordable Care Act was upheld, the reasoning behind the decision has been interpreted as a victory for fiscal conservatives, too. But the restrictions on “congressional coercion” may not be as significant as they appear, Yoo argues, with Chief Justice John Roberts not the hero for both sides some are making him out to be. “Congress may not be able to directly force us to buy electric cars, eat organic kale, or replace oil heaters with solar panels. But if it enforces the mandates with a financial penalty then suddenly, thanks to Justice Roberts’s tortured reasoning in Sebelius, the mandate is transformed into a constitutional exercise of Congress’s power to tax.”

“Unpopular Mandate,” by Ezra Klein, published in the New Yorker. Two years ago, the odds that the individual mandate would be overturned were considered slim to none; yet a few days before the decision, experts predicted them at closer to fifty-fifty. Why did the Republican party change its opinion, making the clause they once supported the main target to oppose? That’s the question at hand, but to answer it, Klein expands beyond the Republican party into why people change their opinions – and how in politics, on both sides, it has to do more with adhering to the beliefs of the group than rational reasoning. “But parties, though based on a set of principles, aren’t disinterested teachers in search of truth,” he writes. “They’re organized groups looking to increase their power. Or, as the psychologists would put it, their reasoning may be motivated by something other than accuracy.”

“A Doctor’s View of the Supreme Court’s Health-Care Ruling,” by Kent Sepkowitz, published in The Daily Beast. To Sepkowitz, the Supreme Court ruling was recognition of the idea that “health care is not just another commodity, but is, like death and taxes, a requirement.” Why is health care different? Because, he says, every single American has an unavoidable relationship with the health care system starting from birth. Because we all are mortal – “destined to become ill and destined to die.”

“Don’t Celebrate Yet – The Supreme Court’s decision will make it much harder to extend health insurance to America’s poor,” by Darshak Sanghavi, published in Slate. “Just what problems have we solved now that the Affordable Care Act has been upheld?” Sanghavi asks. One that hasn’t, he argues, is the problem of un-insurance, citing projections that even with the Affordable Care Act the number of uninsured will decrease only by half. For that reason, Sanghavi cares less about the individual mandate and more about Medicaid, arguing that the Affordable Care Act’s “real impact will derive from its expansion of Medicaid, the Supreme Court’s decision seems more worrisome. By limiting the federal government’s power to expand Medicaid in many states, the Supreme Court has seriously damaged the liberal dream of universal health coverage.”

“How American Health Care Killed My Father,” by David Goldhill, published in The Atlantic. This one was published in 2009, but definitely worth a read. After Goldhill lost his father to a hospital-borne infection, his “survivor’s grief [took] the form of an obsession with our health-care system.” For over a year, he researched everything he could about the health care system. Goldhill’s article identifies specific arenas where the old system was broken and also draws attention to things we accept as fact but perhaps should not. Example: when insured, we have a sense that someone else is paying for our health care bills, but it’s really you – and the rest of Americans. He concludes, “The most important single step we can take toward truly reforming our system is to move away from comprehensive health insurance as the single model for financing care. And a guiding principle of any reform should be to put the consumer, not the insurer or the government, at the center of the system. I believe if the government took on the goal of better supporting consumers… we’d find that consumers could buy much more of their care directlythan we might initially think, and that over time we’d see better care and better service, at lower cost, as a result.”

“In Obama’s Victory, a Loss for Congress,” by James B. Stewart, published in the New York Times. Who really “won” with this Supreme Court decision? Many have been debating that question, and Stewart says that even though reform was upheld, it was truly “conservatives and libertarians” that won, while Congress lost. Stewart explains why this is, and why he sees it as a bad thing.

“The GOP’s selection woes,” by Marc A. Thiessen, published in the Washington Post. Chief Justice John Roberts, appointed by Bush and believed to have conservative philosophies, ultimately swayed to the left in upholding the Affordable Care Act. That switch is something that commonly happens among Republicans on the Supreme Court, Thiessen describes, while switches in the other direction (liberals becoming conservative) virtually never happen. Why? “For one thing, the whole legal and political culture pushes the court to the left.  Conservatives are pariahs if they vote against the left on certain issues. But if they cross over vote with the left, they are hailed as statesmen.” Thiessen is writing about the Supreme Court, but his ideas on “conservatives as pariahs” also tap into a broader point on the stigmatization of conservative philosophy.

“The Bomb Buried In Obamacare Explodes Today – Hallelujah!” by Rick Ungar, published in Forbes. Ungar published this piece in December 2011, but it since regained its popularity. He draws attention to one aspect of the Affordable Care Act that he says will have major, positive, long-lasting impact: the medical loss ratio, which “requires health insurance companies to spend 80% of the consumers’ premium dollars they collect—85% for large group insurers—on actual medical care rather than overhead, marketing expenses and profit.” The provision that is often overlooked will eventually “lead to the death of large parts of the private, for-profit health insurance industry,” Ungar says.

“What Does Health Care Decision Mean For Patients,” Michel Martin interviews Mary Agnes Carey, NPR. Carey, a reporter for Kaiser Health News, speaks articulately about implications for patients. Recommended as a straightforward guide for issues as they might affect you.

Finally, here’s the full text of the Supreme Court health care decision, put up by The Washington Post.

With thanks to my well-read friends for introducing me to some of these, and more.

*Have you come across an analysis that you feel is a must-read? Link to it in the comments section.*

She had an explanation for everyone’s illnesses, except her own.

Ms. A was a 61-year-old woman I once interviewed. She was hospitalized for pneumonia: her third case of it this year. I asked if she had thoughts as to what was causing it, and she launched into a speech about bad things happening to good people. In her mind, her smoking habits and emphysema were irrelevant. At even the slightest suggestion they weren’t, she became indignant.

I once read that women judge rape victims more harshly than men do. Why is that? The author writes, and I agree, that it has to do with preserving the women’s own sense of safety. They want to believe, need to believe that the other person was somehow at fault – because otherwise, what is to separate her from me? That there is nothing is an intolerable thought.

I also once read that lung cancer patients feel blamed and scorned, thanks to the perception that theirs is a self-inflicted illness, and that others offer little empathy.

That is, until it happens to them.

I am glad we as a society are focusing more on prevention. On empowering patients to make good choices for their own health. I realize that in order to do that, in order to have it sink in, people need to despise the things they are avoiding. To be scared of them. To stigmatize them. Stigmatization is a powerful motivator.

But when does stigmatization erode our compassion? Can we be proud of our own health choices, without demeaning the suffering of others? Without feeling high and mighty in the face of another’s vulnerability? Without assuming a mask of denial in confessing our own vices?

When something goes wrong, it’s natural to seek blame. People can be especially skilled at coming up with ways to exculpate themselves while reproaching others. Indeed, contributing factors behind an outcome can sometimes be identified. But sometimes they can’t.

Over-stigmatizing the health habits of others treads on dangerous ground. One reason is that health is the result of a complex web of factors, and we live in a reality in which people can do everything “right” and still get sick. Second, and more importantly, even if they do not – no one deserves to suffer. Third, to tackle vices in our own bodies, we must first accept that they are happening. Stigma leads to shame, and shame threatens honesty.

I can’t help you if I don’t know what’s going on.

I want you to know: your smoking habits do not offend me. Tell me why you started, tell me what it does for you, please, tell me everything. Don’t be ashamed; I’m here to help. I’m glad to hear you’ve considered quitting. We can figure out a plan together.

(Note: certain details of the patient’s story have been modified slightly to protect her privacy.)

***

One evening earlier this month, I was riding the ‘T,’ Boston’s streetcar system, when our train suddenly stopped.

There were the usual sights and sounds of delayed passengers: people fiddled with cell phones, glanced at watches, tapped feet impatiently. Outside, the flashing of police cars lit the night. “Maybe we should catch a taxi,” my friend said, and I agreed. We asked the driver to please open the train doors.

“Can’t go anywhere yet,” he said. “See that dead body?”

“What?”

The few of us near enough to hear him went to the window. Motionless on the pavement was a human-size lump, covered with a white sheet. Next to it, a mangled bicycle. Wheels facing up. Tires and handlebars twisted. Around them, cops were talking. Or were they? It was hard to tell.

Mostly I noticed the way they were standing. In a circle, surrounding the sheet. This was not an unusual occurrence to them, and it showed on their expressionless faces. They were doing their job, and I’m sure they were doing it well.

I’m not sure why their lack of open emotion surprised me. But it did.

***

At the beginning of first year, we were asked to reflect on several aspects of becoming a physician. One of our prompts said this: “Doctors must simultaneously care deeply about their patients and yet maintain detachment. In what ways is detachment a positive, and in what ways can it be a negative, in the doctor-patient relationship?”

“I understand that as a physician, I will be immersed in people’s lives to the point that I will feel closely invested in their outcomes,” I wrote. “While I am concerned about confusing a patient for a host of disease, I also recognize the value of keeping some distance to allow for logical processing of medical issues…”

The person on the bicycle that night was not my patient. I know my feeling of connection is not rational; that it was provoked not by any meaningful relationship, but by the arbitrary circumstances of a T ride through Boston one evening. That people pass away all the time. Almost two per second, I read somewhere. I don’t have the capacity to mourn them all. That’s the right of parents and children, spouses and siblings, other relatives, friends, neighbors, coworkers, religious leaders, caregivers. The rest of us can feel horror, remorse, sympathy – but can a stranger truly mourn?

A bit of detachment is a functional and professional necessity. But it’s hard. For days, I Googled the name of the intersection and “bike crash,” waiting for the media to confer a face, a name, and an existence to what lay beneath the white sheet. I needed to know that a person, not just a body, was there. A person with a life, a personality, stories, friends, memories. In some way, it felt disrespectful not to know.

Maybe I felt that way because of how instantaneously a person becomes a body becomes a statistic. I thought of the graph they’ve shown us in medical school on the most common causes of mortality in the United States. A bar for heart disease. A bar for cancer. Followed by the third biggest cause of deaths in the US: accidents. The person on the bike couldn’t fade into that. Not yet.

Sometime while we were on that train, a bus was traveling in one direction, and a bicycle was traveling in another. Sometime while we were on that same train, everything was fine. Then: a blip in the universe, and something awful and irreversible.

I can’t help but feel that there’s something deeply flawed with a world that can take a person’s life without even giving her time to process it.

“I do not want to let the heartache that comes from one unfortunate outcome become such an overwhelming emotional drain that it detracts from my ability to care for others.”

I know I can’t mourn everyone. I know, especially, that I don’t have the right to mourn the woman on the bicycle. To write about her. I never knew her, while others did. Others loved her.

I am so, so sorry for your loss.

***

The train eventually started moving again, and my friend and I sat in silence. Talking about the details of our days so soon after seeing what we did felt wrong. I alternated between looking out the window and at my feet. Partially I was looking away to hide my wet eyes.

“Do you think you’ll ever become desensitized?” he asked me after a while.

“I don’t know. I guess I have to, a little bit.” I said. “But I’m not sure I want to.”

Over the past week, conversations about the political fallout of Regnerus’ article abounded. The Daily Beast reported that the study provoked a “political war,” with socially conservative pundits using it to affirm their beliefs that gay and lesbian couples should not be parents, while those on the left condemned it as an attempt to undermine same-sex rights. Human Rights Campaign President Chad Griffin went on record saying, “Because of the serious flaws, this so-called study doesn’t match 30 years of scientific research that shows overwhelmingly that children raised by parents who are LGBT do equally as well as their counterparts raised by heterosexual parents.” Many of the reviews, in favor or against Regnerus’ piece, operated in a similar framework of evaluating what the study means for gay marriage and same-sex parenting.

Maybe we should take a step back.

In medicine, we learn that it is valuable to order a test only if it would change our decision-making in terms of care. Otherwise, the test is considered a waste. While the same litmus test doesn’t apply to science research across the board, I think it comes a bit closer in the realm of social science work, which is what Regnerus’ study was. Suppose for a moment that all the critiques of his methodology did not apply, and that his was a robust study. Would its conclusions change your opinion on gay and lesbian couples having children?

If your answer is yes, I’m afraid you have your work cut out for you. By saying empirical data on who rears more stable children is a factor in deciding who should be able to have children, you would be scientifically remiss in stopping at gay and lesbian couples. Rather, you would have to study all groups who want to have children, and compare and contrast outcomes. By race. By religion. By age. By political affiliation. By socioeconomic background. And the list goes on and on. This task becomes even more difficult when you consider that drawing lines between groups can be an arbitrary thing in the first place, and how you decide to draw those lines can impact your results. I have absolutely no doubt you would find data revealing differences between other groups – ones that have no restrictions whatsoever on having children, and who are not under political scrutiny for wanting to.

So now you face a dilemma. If you want to say that differences between groups constitute a legitimate argument for limiting parenthood rights, you don’t have a leg to stand on if you want limit gay and lesbians’ rights, but no one else’s.

What we have to remember is that there is a big difference between an empirical finding and a policy recommendation. Data can be used to show many things we might not like, including differences between groups. But would we, or should we, legislate based on that? Infringe on anyone’s rights? To do so would be to reduce an individual and his/her potential to the group he/she happened to be born into. To place limits on a person’s rights based on incidental factors beyond his/her control should be recognized as bigotry. We don’t need to reject data to make that political point.

In fact, to feel we need to refute unlikeable data buys into a dangerous premise. The impulse to reject findings we don’t agree with is tacitly conceding that this kind of data can legislate rights, so to make sure we maintain the ones we want, it’s best to hide the findings that might undercut them. That admission is deeply problematic – for science because it leads us down a road of stifling findings that don’t resonate with our moral preferences, and for politics because it says our nation’s values on who should be able to have children are not founded in basic rights, but instead subject to the results of a single social science study. Neither is a road we should feel comfortable treading on.

Regnerus’ study had major flaws, and that fact should be known. But his findings shouldn’t have mattered that much, anyway. I for one don’t like the idea of using group outcomes data to determine basic rights. I don’t need to reject his paper to affirm that I support same-sex couples having children, and neither should you.

In this post, I hope to address my thinking about the subject in a bit more detail. I believe excessive curriculum mandates are a well-meaning but counterproductive approach to solving what we are aiming to solve.

The temptation to improve education through mandates is not new. Every few years, medical administrators, politicians, or some other Powers That Be decide an important quality that all doctors should have is not being taught, and that it must be standardized into medical education. Focus was first on mastery of the hard sciences, then turned to increased emphasis on compassion and communication. The latest has been a turn to the medical humanities, with endeavors such as visiting art museums and engaging in poetry-writing sessions becoming increasingly widespread. At the end of 2011, 69 of 133 accredited medical schools in the US required a course in the medical humanities.

Medicine is holistic – a blend of science and art – which those inclined to suggest reform rightly realize involves far more than repairing the human body when it malfunctions. The medical humanities, as a field of study, is invaluable. The question is: should it be required?

Fourth-year medical student Rhys Davies has reservations: “Asking students to compare the role of literature in sickness between Broyard and Mantel is pointless unless they want to get something out of it,” he writes. In fact, he says, it’s because he cares so much about the medical humanities (he is completing a thesis in it) that he opposes its obligatory presence in the curriculum. The setup is bad for everyone. Those not interested are miserable, and those who are have a mediocre experience tainted by the heel-dragging of their peers. As Davies puts it, “Anything compulsory is duly attended but interest is notably absent.”

That is not to say there is no worth in a well-rounded curriculum. There is value in exposing students to diverse ideas and activities, perhaps sparking new passions that never would have been discovered otherwise. There is something to be said for making students do things considered good for them. Mandate nothing, and people might not learn enough. Some need that extra push. They might gripe along the way, but then say after, “I’m really glad I did that.”

But place too much emphasis on curriculum, and the downside is exacerbating a culture of excessive busywork at the expense of some of the most meaningful ways of learning. The knee-jerk desire to reform curriculum whenever a desirable skillset is identified is based on a particular assumption: that every skill is best learned through the medium of coursework. Unfortunately, that assumption just isn’t true.

There is a wonderful ethics professor here at Harvard, Dr. Edward Hundert, who has written a lot about the “informal curriculum” of medical school. A significant transmission of culture happens outside classes, hospital rounds, and the like, he says, over meals or during carpool rides from remote clinical sites. From focus groups with students, he found that “the vast majority of the situations the students described as most influential were conversations with no faculty present.” He concluded: “I have discovered just how little a role the formal ethics curriculum plays in the moral and professional development of our students and residents.” We succumb to the mistake of emphasizing teaching, when what we really ought to focus on is learning.

That can occur in many ways. Dr. Faith T. Fitzgerald, former dean of students at the University of California, Davis, School of Medicine, understands this well. She boldly challenged a request from politicians that more humanities coursework be added to the medical curriculum, explaining: “[I was concerned that] the addition of required courses in literature, drama, sociology, music, and art might actually limit students’ opportunities to read, go to the theater, be with friends and family, and attend a symphony or museum.” Even if they would not have done these things, she continued, the additional coursework would “cut down on contemplative time, volunteerism in free clinics, hobbies, and sleep.”

Requirements come with an inherent trade-off. With the medical part of medical school demanding enough, free time is a commodity. Soak up our time with mandates aimed to make us well-rounded people, and we have less time to actually do the things, outside the narrow confines of a formalized curriculum, that make us well-rounded people.

Nearly any quality under the sun can be justified as valuable for a doctor to have. What would happen if we continued along the path of standardizing them all? One possibility is imitating what is already happening to poor pre-medical students, who, along with having to fulfill course requirements rigorous enough to constitute a major of their own, will in 2015 have to endure a new MCAT: six hours long, thanks to the addition of psychology, sociology, and ethics on top of existent sections in physics, chemistry, biology, verbal reasoning, and writing. Escalate this any further, and doctors-in-training with creative impulses will have zero time to pursue them.

To cultivate knowledge of the humanities or any other valuable trait that makes it to public discussion, I believe that the “informal curriculum” idea hits the nail on the head: change the culture, not the requirements. What reformers need to realize is that medical students are independent, mature adults, with interests and passions we know how to follow – if placed in the right environment and given the time. Some are spouses and parents; some love volunteering, reading, writing, research, music, sports, art, exploring the outdoors, good conversation. I promise, we know how to do those things. And we get more from the pursuit of activities we care about than from narrow mandates that attempt to force desirable traits upon us by decree.

Poetry as reflection, visits to art museums, and other programs in medical humanities are beneficial resources, and they should exist. But participation should be elective. For each activity, there will be students who want to join, and those who show up will genuinely care about what they are partaking in. Those who opt out have different passions that they know how to follow, too. Medical schools should trust their students to do so.

Laura and her green hat inspired a fiction story I later wrote about a young girl’s building obsession with texture and color. Many other tidbits I had learned about her, however, never made it into the narrative. In a story, with words that I arranged, characters could behave any way I chose or undergo any experience I designed. I was able to add and subtract details to Laura’s narrative as I wanted – not necessarily to give it a happy ending, but to package it neatly, smooth out contradictions, and tie up loose ends. A twelve-year-old became a fifteen-year-old, a green hat became a red scarf, and most importantly, the doctors were able to give my character’s illness a name. By writing a fictional story about a patient, I was able to fit pieces of her medical narrative together in satisfying ways I could not do in real life.

The real Laura and her mother had already seen several doctors before us, none of whom had been able to discern what was wrong. I had encountered illness before that shadowing experience, but Laura’s case unnerved me in a way I had not felt before. In the past, illness was devastating, but I found consolation in the knowledge that at least it made some sense. A heart attack in a family member was the consequence of bad genetics and a lifetime of unhealthy eating. My grandmother’s death from Alzheimer’s disease came after a gradual deterioration through a documented series of stages. The experiences were heartbreaking, but I could not describe them as wholly unpredictable. Laura’s resistance to diagnosis or treatment, however, pierced my naïve perception of a rational medical reality. I realized while writing that piece – my first story on a patient – was that what I was trying to redress was my lack of closure. Writing enabled me to turn a vague discomfort into a feeling I could identify.

Writing, both non-fiction and fiction, remains an outlet to help me process my emotions. It was for cathartic reasons that I started this blog in the first place, and I am thankful for its ability to help me make sense of my medical school experiences. Putting experiences on paper enables me to confront my intuitions honestly. By forcing myself to articulate a web of feelings into an organized string of words, I am able to process my reactions more coherently. When closure feels to be lacking, writing enables me to keep the conversation going, even if only with myself.

In three weeks, my first year of medical school will be over. I’ve had the pleasure of meeting wonderful patients like Ms. P, Ms. L, and many others, for not every story has been publicly captured on my blog page. But by reflecting on some of my experiences through writing, I’ve come to recognize a consistent emotion of this year: frustration. Just as Laura was not able to be diagnosed or treated, Ms. L’s history of abuse could not be solved in the hospital, and Ms. P would die whether I was ready to accept it or not. I feel frustrated that the line between medical and social problems can be so blurry – and that the latter is so much more difficult to treat. I have seen things that depress me about human nature, such as bruises and suffering that result from another person’s inexplicable rage, rather than from a common enemy called illness. I am frustrated by the transience of the medical student-patient interaction – a bizarre dynamic where in an hour I can get people to open up to me about their most intimate secrets, and then I can walk out of their lives. I have become skilled at collecting information, but no better at handling it. How many times this year have I said “I don’t know”? “I’m sorry, but this is not part of my role”? First year has meant walking around the hospital focusing far more on not messing up than on actively doing good. It is easy to harbor grandiose ideas of helping people one day and feel tiny, invisible, and useless the next.

In a way, all the stories from this year have made me realize what I discovered three years ago, just in a larger sense. Things do not package neatly in the world of medicine. Making decisions with limited information, feeing that I am not doing enough, and experiencing lack of closure over a patient’s story are all things I will have to deal with on a regular basis.

It’s a strange feeling, frustration. In small doses it can be an impetus for good, but carry too much and it can be crippling. As my first year of medical school winds to a close, I think I can safely say I am at the former end of the spectrum. Feeling useless has motivated me to ask questions, to research things I do not know, and to reflect on all the aspects of medicine, scientific and humanistic, that I want to understand better. In a certain light, I am grateful for my incessant feeling of ineptitude, and for the resources and mentorship I have found here to help me grapple with it. I am exasperated, yes – but more so I am inspired. As I continue collecting patient stories over the next three years, the challenge will be staying there.

I have a standard set of social history questions. Ms. L screens positive for nearly all of them. Victim of domestic violence. Victim of sexual violence. Poverty. Addiction. Depression. Thoughts of self-harm.

I try not to cringe as she pulls down her gown to show me scars on her chest where an ex-boyfriend burned her with cigarettes. I am looking at deep bruises, not at the hands of some common enemy we call illness, but at the hands of another human being. What compels someone to do that? We are in a hospital, but this is far from strictly a medical problem.

A few weeks earlier, she had tried to take her own life. Wrapped cord around her neck. Saved only by a fortuitous visit from a home health aide, who convinced her to untangle herself before she could do anything she would be unable to reverse.

Now she is crying. I feel like crying with her. There are only so many times I can say “I’m so sorry to hear that” and “that must have been really difficult.” My words sound trite. I feel inept. She looks at me through tears, waiting for me say something more helpful.

***

First-year medical students occupy a unique niche in the hospital. My classmates and I wear white coats and ask people about their lives and illnesses, but we cannot answer medical questions or offer anything in the way of treatment. We are in limbo: on our way to becoming caregivers, but unable to provide care.

The hospital is a rehearsal. Patients are practice. I collect their information to hone my ability to conduct an interview, give an oral presentation, and do a write-up. I am not helping anyone. On the contrary – by giving us their time, patients are helping us; they are teaching us how to be become better doctors.

This disruption from expected roles can understandably lead to confusion. Though I always introduce myself as medical student and explain that I am not part of the patient’s care team, Ms. L was not the first patient who has said things suggesting she did not truly understand my role. Some patients ask for advice. Others probe for clues about prognoses. “What are you going to do with all this?” a previous patient asked me at the end of our interview, when I was packing up my notes.

People come in and out of patients’ rooms all day long. It can be difficult for anyone to keep track of who does what. In fact, a common critique of the medical system is that while individual providers are high quality, the problem lies in lack of coordination and gaps in continuity of care, as patients find themselves explaining the same stories over and over, unclear on why.

For someone like Ms. L, misunderstanding hospital relationships could have serious consequences. Sitting across from me is a profoundly depressed woman who spoke bitterly about caregivers abandoning her. I prolonged the interview for as long as I could, but eventually I had to report back to my preceptors. Would she perceive me as abandoning her, too?

***

I must have looked upset after I presented Ms. L’s case, because my preceptor picked up on it. He told me that it’s easy to “spiral” after an encounter like this – to start questioning whether medicine is worth it, or whether we do any good at all. He told me to do something fun that evening to take my mind off what had happened.

I tried but was unsuccessful. Instead, I thought more about the Pandora’s Box analogy. Sometimes it is not up to you whether it opens. I walked into a room on a general medicine ward, asked a patient a few simple questions, and wound up in an emotional minefield I felt wholly unequipped to navigate.

The challenge in the hospital-as-practice setup is that does not prevent emotional rapport from developing. The hospital dynamic, where one person is vulnerable, and another comes across as a professional, practically guarantees it.

Once a difficult conversation is opened, you cannot just close it. So what do you do?

The answer from my preceptors reminded me of what I was instructed to do when I was a kid and saw someone in trouble: tell a grown-up. In this case, that translated into informing Ms. L’s medical team of her issues so that she could receive appropriate care. In most cases, you probably should not follow up yourself, as it is better to err on the side of not doing further damage when you are not even supposed to be involved in the first place.

Still, it is strange to think in terms of not doing damage. Aren’t I supposed to be actively helping people? Are the only impacts I can have at this stage of my training neutral – or worse than neutral?

My experience with Ms. L shook me. I was fortunate that her medical team was already aware of her emotional health, but I realize there will be cases where I might be the only confidante of privileged and delicate information. And that can happen during any stage of medical training – regardless of how qualified I am to handle it. I am afraid that is the inevitable price of practicing on human beings. On my way to becoming a doctor, I am frankly terrified of doing more harm than good.

(Note: certain details of this story have been modified slightly to protect the privacy of the patient.)

From an early age, I had a general awareness of my family’s history. I knew my grandmother and grandfather were survivors of the camps; I knew my Hebrew name, Esther, carried significance for a child family member who was lost; I knew that my grandfather weighed just sixty pounds when finally liberated. There were references to beatings, torture, and public murder. I knew our extended family was limited, and that my grandparents lost many whom they loved.

Still, it took years for the most gruesome details to take shape. My grandfather passed away before I was born, and my grandmother did not talk about her past explicitly, telling me “ach, you are too young” when I asked. Yet deeply aware of the importance of passing on her history, she said she would tell me when I was older.

The conversations never happened. The same time I was growing older, so was she, and she was prevented from sharing her story with me – no longer by her own hesitation, but by illness. Alzheimer’s Disease gradually stole my grandmother’s ability to move, say my name, and finally, communicate at all. A month before she died, I could not tell if she even recognized me.

The burden of communication fell to the next generation. Bit by bit, my father and aunt filled in the details of my family tree my grandmother could not. Anonymous relatives in a sea of six million became people with names, ages, and personalities. Smiling photographs, taken on the eve of war. Places and methods of murder. Last words.

It was one thing to have an underlying awareness of my history, but entirely another to take in the brutal details of my family’s murder. There are stories I wish I could un-hear, though I realize this is a narrative I need to know and preserve. My grandparents gave life to five grandchildren; each of our names bears at least one commemoration to someone who was lost. But there are still not enough of us to honor all the victims. Our commemoration will have to spill over into our future children: the fourth generation.

***

Sixty-seven years since my grandparents were liberated, I have found conversations about the Holocaust outside our household quite different. There are certainly many people who recognize it as a historical horror to be treated with the utmost sensitivity, to which anyone victimized deserves nothing but the utmost respect. But it’s not ubiquitous. It is strange to pick up an opinion piece or listen to the radio and hear the cavalier invocation of something my grandmother was so cautious to broach, that caused both my grandparents lifelong grief and left them with voids that could never be filled.

The use of the Nazi analogy spans academic and political worlds, ivory towers and radio talk shows, and cuts across both sides of the political aisle. It has become so prevalent in online dialogue, in fact, that it prompted author Michael Godwin to coin the informal “law” bearing his name: “As an online discussion grows longer, the probability of a comparison involving Nazis or Hitler approaches 1.”

Rush Limbaugh popularized the term “Feminazi” to malign women’s rights activists and uses the phrase on a regular basis. In 2003, People for the Ethical Treatment of Animals (PETA) launched its “Holocaust on Your Plate” display, which placed images of animals in factory farms and slaughterhouses next to those of Jews in concentration camps. The president of the organization made comments like, “Six million Jews died in concentration camps, but six billion broiler chickens will die this year in slaughterhouses.” Glenn Beck compared the victims of a shooting in a Norwegian political camp to Hitler Youth, and then defended his right to say so by claiming, “If we’re living in a society where we can’t say X in the same paragraph as Y and not be told we are comparing it…we are going to be a society of gas chambers.” A few years ago, ads compared President Bush to Hitler; now, the same is being done to Obama.

Turn to the world of bioethics. In 2005, the nation’s debate over whether life support could be withdrawn from Terry Schiavo, a woman in a persistent vegetative state, drew many comparisons. As disagreement over scientific and medical practice grows, so does the list of subjects in which the analogy has been invoked: stem cell research, abortions, health care reform. Nothing, it seems, is off-limits.

***

What does invoking Nazism accomplish? I decided to pose the question to bioethicist Arthur Caplan, who has written a lot about the subject and who was kind enough to lend his insights to me last week. “Some use it as a kind of rhetorical attention grabber,” he said. “In bioethical debate, it is a discussion ender – it shuts off debate. It’s evil incarnate, end of story.”

But I still wondered about motivation. Is it lack of awareness – or could the offenders have more sinister intentions? Dr. Caplan’s opinion was that it is mixed. While some simply “don’t understand what is required of an analogy,” others call upon flagrant crimes to lambaste their opponents in the most powerful way they could think of.

The more distant something becomes in our collective historical memory, the easier it is to misunderstand, misuse, and abuse. The rhetorical tactic gains strength as survivors die off.

***

Is it ever appropriate to invoke the Holocaust? Absolutely. The most egregious horrors bring with them a moral force. To learn nothing from them, to have the brutalities ignored, dismissed, or forgotten, would be just as insulting to the victims. There were social and political ingredients that allowed the Nazis to rise to power, dehumanize an entire group of people in the name of science, and commit crimes against humanity on an unspeakable scale. The Holocaust, as a field of study, is critical.

In fact, the field of bioethics was essentially created from the horrors of the Holocaust. Principles like informed consent, respect for persons, and autonomy, foundational in any bioethical discussion today, grew out of the legacy of the camps. After the war, the Nuremberg Doctor Trials assessed 23 physicians who oversaw the “euthanasia program” to kill those considered unworthy of life and who conducted experiments on thousands of concentration camp inmates without their consent. Sixteen were found guilty, with seven sentenced to death. Out of the Trials came the Nuremberg Code, a set of ten ethical principles for permissible medical experimentation on human subjects.

One of the most difficult things to accept after the Holocaust was that it took place in one of the most technologically advanced societies of its time, by some of the most respected professionals in society. Brutalities were orchestrated in the name of science and medicine. Physicians assessed the genetic background of individuals to decide whether they should live or die and planned and executed murder. As Dr. Caplan said to me, “they [the Nazis] didn’t have to drag doctors and scientists in – they led the team.”

The critical components of pointing to the Holocaust in contemporary ethical discussions are understanding how to make a proper analogy and harboring appropriate motivations. The Holocaust comprised so many diverse crimes on such an enormous scale that invoking it broadly does not say much. Rather, if it is to be used to productively and respectfully advance a discussion, it would be better to point out a specific aspect, compare to something specific today, and then explain why the analogy holds.

That is quite different from what occurs. Much of the time, the analogy is not so much an analogy at all, but rather an attempt to vilify someone or something that is disliked. When someone makes that type of accusation, you have to wonder: what does he actually mean? Does a Nazi simply imply a person whose ideology we disagree with? What makes the opponent Nazi-like, and why?

When used in this way, the Nazi analogy constitutes the worst form of rhetorical exploitation. Acutely aware of the emotional reaction it will evoke, those who use it do so intentionally to get that reaction – to garner political gain and convince people to join their side. A Holocaust reference is brandished as the ultimate tool of persuasion, as an opponent cannot argue. If something is anything like Nazism, you win the debate.

But by conflating one of the most heinous crimes against humanity with any agenda found disagreeable, those who use the analogy are exploiting a tragedy. They are taking vile advantage of the victimization of others for political profit.

As Dr. Caplan put it, “Because its misuse diminishes the horror done by Nazi scientists and doctors to their victims, it is ethically incumbent upon those who invoke the Nazi analogy to understand what they are claiming.”

***

Critics of the Nazi analogy say it trivializes the experiences of the victims and is grossly insensitive to survivors and their descendants. I could not agree more.

But I would argue the problem runs even deeper. What those who exploit the Nazi analogy fail to appreciate is that their words shape public behavior and understanding. Speech influences how we think, how we react, and whether we judge something as acceptable or not. Language shapes norms.

As a result, by persistently misusing the Nazi analogy, the pundits are doing more than speaking in error. They are distorting history. Inaccurately invoking Nazism creates a moral and emotional distance from the Holocaust that has evolved into something more dangerous: a distance to the truth. For those who have not properly learned what the Holocaust was, this can be their introduction to it. Intentionally or not, the abusers of the Nazi analogy are paving the way for false understanding.

What happened with the overuse and misuse of the Nazi analogy over the years is that it ceased carrying the rhetorical force it initially had. We react differently. The fact that we don’t respond with repulsion anymore – that a student can say a professor who gave him a bad grade is a Nazi, and no one bats an eyelash – means the pundits generated long-term impact beyond offending. We are becoming desensitized to the horrific experiences of the victims. By making the analogy a part of the lexicon, those who abuse it are devaluing the Holocaust.

If there was any good that came out of the recent Rush Limbaugh-Sandra Fluke scandal, it was that it showed collective moral outrage works. Limbaugh hurled terrible insults upon a woman and the public rightly reacted, leading to significant losses in his sponsorship. Yet in the same rant that caused the backlash, he also accused Fluke and others like her of being “Feminazis.” To that, most of us kept quieter. If only we had reacted to the term with similar condemnation as we did to the word “slut.” The victims of the Holocaust can be restored the respect they deserve.

***

My grandmother had a plan. When I was old enough to understand, she would sit down and tell me about her experiences in Bergen-Belsen and those of my grandfather in Buchenwald. She had a profound awareness that it was important to pass on these stories, even though recounting them caused her pain. She knew the significance of documenting truth, even through the grief of reliving her utter humiliation, victimization, and loss. My grandmother believed in the value of speech.

Seventy years after parents, siblings, cousins, and nieces and nephews of my grandparents were shoved into the gas chambers, the few in my family who escaped them are no longer here to tell their story. As the same is happening to the last remaining survivors across the globe, the world is losing primary sources to speak up, correct false comparisons, and promulgate a historical truth.

For those whose voices were taken from them, I humbly offer mine. But I worry it’s becoming a lonely endeavor.

To those in the public spotlight: I plead with you to be aware that your words have a ripple effect. To reflect on the impact of what you say before you say it. To set the bar for discourse that is conducted with civility and respect.

To the rest of us, my hope is that we continue speaking out in the face of verbal abuse. To realize that collective action makes a difference. That our words, too, matter.

In commemoration of the six million Jews who perished. In loving memory of family members I have never known, but will never forget. For my grandparents, may they rest in peace.