I was shocked to read about what some doctors at my institution have been doing. Read the whole article, which is thoroughly researched, painstaking, and - not to mince words - damning. A group of radiologists, with a distinguished senior scholar at the head, have been interpreting X-rays and CT scans against medical and scientific consensus, sacrificing not just intellectual consistency but the fortunes of coal miners and other workers, whose diagnoses of black lung were thrown into shadow, and whose lawsuits were judged in favor of their employers.

We can point fingers at these doctors. If I didn't work at Hopkins, perhaps I would go on at greater length here about what their systematic deviation from scientific practice means for patients' lives.

The more you think about it, though, the more you realize that we are all implicated, in greater or lesser measure, in similar activities. Our motives are perhaps not as venal; the connection to coal company's payment not as relevant. But inconsistency of diagnostic practice, dealing out judgments, interpretations, and prescriptions not based on the best scientific evidence, and depending on pseudoscientific "lore" under the influence of economic factors are all widespread in today's medicine.

In fact, if you consider how ubiquitous in today's medicine is the use of non-evidence-based treatment, you understand that this pneumoconiosis story is only the tip of a very black iceberg indeed.

Cross-posted from the LitMore blog. Thanks to Julie Fisher for the opportunity!

In the first months after I got here, I asked myself when I would be able to say “I come from Baltimore.” Then I realized that’s a stupid question. A city doesn’t require the participation of any given person. That is its promise of freedom and alienation: you can move to a city and be completely anonymous. Baltimore doesn’t care whether I’m from it or not.

The real question is: have I really gotten to know Baltimore yet? Do I feel a part? Living here means confronting huge daily diifferences. Black and white, rich and poor live starkly opposed lives in this city, and since I have always lived a life of comparative privilege it becomes a responsibility to place myself, somehow, within the entire city of Baltimore, not just the thin strip of rich white suburbs I live and commute in.

It’s hard to meet different kinds of people. You have to talk to strangers, which I’m not comfortable doing. But there are two things I love which have helped me overcome, if only in small measure, my city-dweller’s inertia which keeps me an individual in an atomized society. One is writing. The other is medicine. The two – especially in Baltimore – reinforce each other.

I work as a doctor in the gleaming city on a hill that is the Johns Hopkins medical campus. Hopkins has had its difficulties relating to the community, and only in past decades come to realize its responsibility and interrelatedness with it. I practice general internal medicine: in other words, I treat sick and healthy adults of all sorts: all colors, sizes, ages, shapes, and incomes.

As an ordinary person, I am impatient, preferring the constrained dimensions of poetry to the sprawling indulgence of a novel. “Yeah, get to the point,” I tend to mutter to myself when someone treats me to a tale. As a doctor, not through any alchemy but by dint of education, sustained practice, and proffesional aspirations, I listen more. I take down stories. I write down patients’ tales of suffering, anguish, success, heartbreak, and courage nearly every day – without any attention to literary artifice or style.

Unfortunately, I can’t tell these stories to anybody. This is a good thing, I think, this confidentiality. But it does compartmentalize. Over here is my comfortable, privileged rich-white existence, the one lived by 25% of Baltimoreans, more or less. And over there is the existence of many more Baltimoreans who are different from me in various ways. I can’t tell their stories in all their painful exactitude outside of work. Recently, many medical centers have started “allowing” patients to see their own medical notes, but none in Baltimore that I know of – and at Hopkins that is definitely not the case.

What I can do, though, is make up stories about people like them that I can share with the wider public, or at least with whoever wants to read them. Thus, without any concrete plan in this regard, I have been trying to write short stories ever since I came to Baltimore. I’m just starting out so I’m not very good at it. Learning how to put characters through their paces feels a lot like learning the lessons I have perhaps more completely internalized, in the past decade or so, as a parent of young kids: you can try to bodily move them from place to place, strenuously indicating that they should PUT ON THEIR SHOES and GET INTO THE CAR, but sometimes characters – like kids – have to be let alone to do what they want.

These stories that I’m trying to write and the narratives I record in the medical chart have a lot in common. They are meant to be read. They have a point: In the medical record, Chekhov’s adage about the gun hanging on the wall is all the more fitting. If someone comes to the doctor with chest pain, the doctor better proffer an explanation, by the end of the note, why she thinks the pain is there. Medical notes, like stories, can’t be loose, baggy, or meandering. They must hold the reader.

And both the medical note and the created story must understand the other human being, through acknowledging their concrete yet unknowable specificity. As a doctor I might not know what it is like to have many relatives in jail, others with mental illness, and still others with substance use problems. But I know what pain is like. When a patient comes to me with pain, I can try and heal it despite my ignorance of their inner life.

As a writer, I can no more divine someone’s psychic struggles than I can as a doctor. But I can try and externalize those struggles in a plausible way through showing what they do, what happens to them, what they say and how they react. I don’t aspire to any measure of healing through my still-inexpert prose stylings. But I do hope to inhabit this city of inequities more fully, and become another in the long line of Baltimore writers: if not through my stories, then at least through my medical notes in the privacy of the exam room.

I am always interested in asking, "What questions should you have asked before...." And with the ellipsis I am talking about any health care situation. What questions should you have asked before you picked a doctor? chose a treatment? heard about your diagnosis? filled your prescription? discussed end-of-life care with your family member?

So what should you have known? What could you have done differently in the process of making decisions, advising, treating yourself or others, or just coping?

And, to take it a step farther, now that you have thought about what you should have asked differently, will that change what you do in the future? How are you going to make that change happen?

Here is a talk I gave at the annual meeting of the National Physicians Alliance on October 20, 2013, in Washington, DC. The briefest version is this: Everyone talks about patient-centered care and realizes that our system is doctor-centered. How do we square the circle and get from one to the other? Patient-centered care is a mantra more often repeated than deliberated on and well defined. We must recognize that patients are unique individuals, and that the relationship between the primary care provider and the patient, a pillar of an improved system, must include all sorts of patients – no matter what their desired involvement in decision-making.

I'm going on some smaller and longer trips over the next weeks, which put the topic of health disparities in comparative contexts. Disparities is the scientific term for health inequities. In short: everyone should get the same healthcare, but not everyone does. You get worse care if you're black, or poor (unfortunately, those are obvious). What about if you are older, or LGBT, or speak a language other than English, or live in a rural area, or have a chronic illness, a disability, or a mental health issue? Probably. But the question is not just yes or no, obviously, but how, why, and what the solutions are.

Next Friday, October 24th, is the most local of the events. I'll be giving a 400-second talk, that's 20 slides in 20 seconds each, at PechaKucha Baltimore, the first local rendering of the speedy-talk format that has already been done in a number of other cities. My topic will be Talking Heals. And, while I won't be mentioning specific health statistics about Baltimore inequalities (400 seconds isn't enough for statistics!) I will certainly have in mind the great, abiding fact of Baltimore life. "The rich are different from you and me," as F. Scott Fitzgerald said in another context: yes, they have more money (as Hemingway is supposed to have responded), and thus more health. How can we bridge the gap? Part is access (the poor in Baltimore can't get in to see doctors, there's a shortage of internists), part is cost (for obvious reasons) - but part is also quality. And part of that quality piece is to make sure that doctors and patients can communicate across lines of race, class, and origin.

On the preceding Sunday (I'm discussing these events out of their chronological order), October 20th, I'm giving a talk at the National Physicians Alliance: how do we make our doctor-centered system into patient-centered care? You might not be surprised to hear that the solution I proffer is neither all one thing (patient centrism, the advice of the doctor be damned!) nor all the other (status quo and to heck with EMRs!) but something in between: investing in and maintaining relationships.

Finally, in December, I am heading to Peking Union Medical College Hospital in Beijing, at their kind invitation. I hope to acquaint myself with their system and China's system at large, which I am sure demonstrates some inequities unique to the Middle Kingdom and some shared with the US as well. From what little I know about the current Chinese socioeconomic climate, there is rapid and thoroughgoing social change - which I hope has not swallowed up previous governmental plans to provide better primary care access to millions of Chinese.

Through these multiple dimensions of care, quality, and access, applied across various regions, we can aspire to great change. Lots to do!

As an advocate of patient-centered care, I have to recognize that some varieties of patient-centrism make me more comfortable than others. If I really want the patient to do X, and the patient doesn't want to, I generally feel okay about that. Frustrated, sure, and often times convinced that my way is the right way and the patient's way is some sort of detour. Most often, though, I am able to put aside those feelings and encourage the patient to make their own decision. I am a less-is-more kind of guy, after all. Plus, encouraging the patient's decision making can leave behind the pleasing glow of low-grade self-righteousness.

But sometimes things go the other way. You have garden-variety back pain, I tell Ms. X, without any alarm signs that might indicate infection or cancer. Yet she still wants the scan. Or say you come to me and want to check your "basic labs," to make sure "everything is okay with your blood."

Neither of these is necessary. MRIs for garden-variety back pain, as we have discussed before in this space, can lead to real harm, as can blood tests for no good reason. And this, the asking for things that I don't think have a point, is very difficult for me to deal with. I think this because it goes against the grain of my personality (I would rather do less, and avoid iatrogenic harm, than do more and cause it) and such requests reinforce a real, justified expectation that we all have when we go the doctor: we should leave with something, even if it is just a prescription slip. It's as if the X-ray order or the antibiotic we leave the doctor's office with is an objective correlative for the care they are supposed to give us.

When the patient asks for something that might harm them without discernible use to me, I try to explain my views - and then people, being who they are, sometimes want to make that same decision. Which leaves me with a range of unpalatable options. I can say no; I can say yes; or I can temporize. Saying no makes me feel good and dissatisfies the patient. Often, if the contraindicated care is provided by a broad range of providers anyway (e.g., antibiotics for viral upper respiratory infections), my refusal does no good. If I say yes I have implicated myself in the patient's potential self-harm.

Part of a solution - apart from me biting the bullet and saying no more often - is to change expectation, so that leaving the visit "with something in hand" can be not just a script, or a procedure, but a plan of action or a symptom diary to be filled out. Until then, disagreement will still get my hackles up, especially if the patient wants something I don't.

There's one question I get asked a lot:

"I research my health problems on the Internet. Am I a hypochondriac?"

First, we should ban that word when talking about ourselves. No one wants to be called that, and doctors who use that word are committing malpractice. Everyone has some range of complaints and worries in life, often physical and mental together, and this is our job as doctors: to hear them out. I firmly belief that no complaint is illegitimate.

Nor, for that matter, is looking stuff up on the Internet a problem. Given that the advice proferred by doctors is most often not consonant with the scientific evidence (to quote this much-cited paper, "Even those physicians who are most enthusiastic about EBM rely more on traditional information sources than EBM-related sources "), I doubt that seeking information on the Internet is any worse. (Of course, there is already a considerable literature on the topic.) Nor do I know of evidence that seeking health information on the Internet increases worry, another common concern mentioned to me.

I think the relationship between physical symptoms and worry actually go in another direction, at least as I see it. A subset of those who have common physical complaints sometimes have a lot of them, and with some frequency these are due to undiagnosed anxiety disorders or other psychiatric ailments - which often go untreated.

In short: physical complaints are never to be dismissed, no matter what their cause, and having recourse to publicly available information is not to be looked down on either.

At the International Conference on Communication in Healthcare, which I just returned from, there was a discussion continuously coursing beneath the surface and bubbling up every once in a while. If we - acolytes of shared decision making, whether patients or providers - want to encourage decision making that has the person involved at the center, recognizing their preferences and values, does the kind of decision in question have anything to do with the relevance of those preferences? Is it really the case that (as was said multiple times during the conference) there is "no such thing" as preference-sensitive decisions, for the reason that all decisions are sensitive to preferences? Everything - it was said in this argument - involves preferences, and countless decisions are made in the course of a day. Getting into the car to go to the doctor's office is a decision. Taking a pill, or not, is a decision. Picking up the phone to talk to someone about your symptoms: that's a decision too. So, the argument goes, to pick certain health care decisions as more "preference sensitive" than others is meaningless. Everything involves an exercise of wants, desires, and priorities.

I think this ignores the diverse uses of the term "decision" and the verb "decide." Surely not all of the following are the same?

I decided to take an aspirin to reduce my chance of heart disease.
I decided to go to the doctor.
I decided to take a deep breath.
I decided to perform CPR on this bystander in the street.
I decided to forgo resuscitation if my heart should stop.
I decided to quit smoking.

It must be that these involve various shadings of the word decision, a different mix of voluntary, quasi-voluntary, outwardly imposed, and preference-sensitive action. If we are to further care that is consonant with peoples' preferences, we should recognize that sometimes these preference are at the fore in a given decision ("I decided to walk 2 miles every week!") and sometimes not ("I decided to take time off work to take care of my mother"). There are differences that should be recognized, and eliding them runs the risk of dismissing when preferences might actually be most important.

Each needs the other's tears.
Drops on a script:
we see this is
the purest physic.