Archives for posts with tag: medicine

I haven’t written much about parenting, because most of it is hard and boring. Like maintaining health, either as a doctor or a patient, it’s usually a slog, requiring wellsprings of confidence to remain sure that what one is doing in the moment will have some measurable impact down the line. To that end, I have decided to found an organization to inspire such confidence, while establishing standards that can make most of us – the average parents, the pretty-good providers – feel supported in the slog. It is called the Adequacy League, and will have at least two arms, one for parents, one for physicians and patients.

The League of Adequate Parenting will emphasize that most of us who bellyache about child-rearing, and fear that we are not doing well enough, are actually doing just fine given our circumstances. This means, of course, that if we are parenting in resource-rich circumstances, we should appreciate that fact: our adequacy is not likely to be the same as that achievable under other circumstances.

Similarly, the Adequate Doctors-and-Patients’ Union recognizes – by charter! – that there is a tension to medicine. On the one hand, much of what ails us gets better with time, and we ought not to interfere with that. But, on the other hand, we want to actively interfere in a great many conditions for which there is no “natural” cure. Adequacy means neither interfering without exception on principle nor refusing to intervene on the basis of some misguided alliance with “nature.” Neither doing too much nor too little, and not looking over one’s shoulder continuously at the latest study. The adequate doctor or patient can be satisfied with her efforts toward health even as she knows she is not perfect.

Adequacy does not mean complacency, but the ability to take stock of our current limitations, appreciating all we are managing to do.

Excellence can be quantified, sure, and we should all aspire to it. Poor performance can be avoided as well with the help of keen analysis. But neither striving for excellence nor avoiding error and harm can get us through a weekday morning, a whiny toddler, a chronic illness, a day full of things-to-do and people with quite legitimate demands whom we need to serve. Sustaining a notion of adequacy is key. The Adequacy League recognizes this. Though it presents no awards, reimburses no one for travel expenses, and has no meetings, it will exist, quietly, wherever you are, as long as you need it.

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.

 

Cross-posted to the book blog.

A comment by a friend got me thinking. She mentioned that the constantly changing guidelines occasionally make her skeptical of medical advice.

It is true that guidelines change. By the same token, though, all knowledge changes. There are different ways to model the function of knowledge change. Are we asymptotically approaching truth? Does each generation of scientists invest in a new explanatory model, which is then discarded some time down the line in favor of another – a new paradigm, not necessarily closer to the truth? Or are scientists continually confronting new problems, with different narratives, so we’re not so much finding new answers as dealing with new questions?

All these possibilities apply to medicine. Guidelines for, say, the optimal control of blood pressure don’t change simply because we have a better idea of what the perfect blood pressure is. We have a different array of blood pressure treatments than we did just a few years ago; we have a different understanding of the relationship between systolic and diastolic blood pressure; we think a lot more about patient preferences than we did 10 or 20 years ago.

Where does this leave us? I hope not with widespread disillusionment that medicine, after all, does not inexorably march towards truth and health. Like any other empirical caravan, we trundle along for a while, get lost, find a new byway, and discover that we weren’t lost at all, and now we are in an even better place than we thought possible. Or we discover that the folks with us are not merely passengers along for the ride, but they know how to drive as well as we can.

When you hear about changing health care, you might be worried about a loss of stability. I would say that understanding the world requires constant change, in a world of flux.

 

Reposted from January. The panel referred to is still meeting, and we are working on its final report. Stay tuned!

I went to a meeting of a panel this past week under the auspices of the Institute of Medicine. Called the Evidence Communication Innovation Collaborative [yes, I know], the group discusses a number of topics around the general ambit of communicating medical evidence to patients. We spent a lot of time, productively, on the topic of decision aids. A lot of people at the meeting really like them. (Here’s a collection of decision aids, which includes a short primer on what they are; the Wikipedia article is informative.)

I like them, too, and it’s not hard to understand why. Decision aids are the fuel of shared decision making. Information should not be concentrated in the hands of the doctor; rather, it should be presented to the decider – which we presume is the patient, the ordinary person – in a way relevant to them.

But they are not the panacea:

We forward thinking doctors know in our heart of hearts that decision-making should be shared with the patient; unfortunately, not all patients think that way. Some still rely on the physician to make their decisions.

Even the alternatives, and the risks and benefits attached to each one, are not so obvious without some thought. And that thought is not the view from nowhere, as a philosopher put it, but dependent on the point of view of the person thinking. The risks, benefits, and preferred alternatives depend on the kind of person doing the choosing. And who’s to say that a patient from one race, say, or economic stratum, will react to alternatives the same way as another?

Count me encouraged but skeptical: there were a lot of people in that room ready to share decision making. But a decision aid is only as good as the decisions it includes. We need to know a lot more about how people make decisions, and how they talk to their doctors, before we can expect such aids to do more than reproduce our current health care system’s inequalities and insensitivities.

Cross-posted you know where.

We hear it all the time as doctors, and we say it a lot as patients: “I know my own body.” There are many layers packed into that one phrase.

I have my own integrity as a person. You, doctor, with your knowledge: wonderful, but you must recognize my independent existence, needs and wants.

I am unique. Indeed, you, doctor, know the ways in which a particular disease commonly presents itself. But I still can teach you things about the way my body reacts.

I am the expert about me. You can tell me the ways I should react to interventions, but only I have direct and unmediated access to my senses.

Take these facts into account, and remember: in general physiology, you might be an expert. But in the particular physiology of myself (says the patient, say us) we are awarded a doctorate every single day of our lives.

A friend wrote me after a reading:

“[W]hat I took from it is that there are indeed two MEDICINEs: the science one (read lab animals) and the humanistic one in the best tradition of Hipoocrates forward.”

The reference to “two medicines” puts me in mind of the famous essay by C.P. Snow about two cultures: the sciences and the humanities. If you read far enough down in the Wikipedia article about the concept, you see – as with so many concepts – how it becomes complicated and quibbled with out of all recognition.

Sometimes, though, quibbling misses the main point. There are those who are blind to the sciences, and those who are exclusively centered on the virtues of the humanities. Not to say that there isn’t overlap, but there should be more.

The same can be said of medicine. To be excellent professionals, doctors and nurses require both technical facility and appreciation of emotional complexity. And by “excellent” here I mean something like “virtuous,” in the sense of striving towards perfection of the whole individual.

So, when we are talking about the two medicines, perhaps we should mean that the best of the scientific/biomedical view of the patient, and the humanitarian/narrative/irreducibly complex view should both be united in the provider. If that were the case, whatever action a provider took would be in a deep sense uncategorizable. 

Patient-centered care often brings the grandest flights of fancy rudely down to earth. Whether this applies to the idea of “two medicines in one provider” is difficult to say. I do think that most people are looking for a provider who combines multiple virtues: a full person, not a scientific machine nor a device to convert suffering into publishable narrative.

How to cultivate such inner diversity, true balance, without sacrificing depth and accomplishment…?

Cross-posted to the blog at Talking To Your Doctor.

Like anybody, I have particular favorites among people I work with. I try to give the best care to every single person in my practice, but I can’t deny there are people whose name on the schedule makes me smile. Today, I saw Ms. Mallory, not her real name. She’s a dynamo – I wish I could tell you about her historical importance and her artistic talents, but then I would be identifying her and running afoul of various rules and regulations. So I’ll stick to her cats. She has five of them.

Like people with five kids, she is always running from one appointment to another with one or more in tow. One of them had to go to the dermatologist the other day; the other had a general veterinarian appointment. A third needed grooming. And so it went. “I’m exhausted taking care of them!” Ms. Mallory told me, with a proud smile.

She’s a little mysterious, and I find it hard to put a finger sometimes on what’s bothering her. Many doctors call this “being a poor historian” but that phrase rankles me no end. Telling a good story about our symptoms is important (I discuss the reasons why at some length in my book), but often this phrase is a condescending excuse why the provider isn’t listening to the patient.

Often, then, I find myself wishing I knew what was really going on with her. Ms. Mallory has her ups and downs, and her chronic medical conditions which makes it all more complicated. When she’s in these peaks and valleys – some physical, some emotional – I would give anything for a deeper sense of her days and nights. To be more precise, I would love to interview her cats. Only they have a close-up view of her inner life. And, just like a wife or a husband, they know what it’s like to care for and be cared for by the person they live with.

I don’t do home visits. Even if I did, I wouldn’t get the whole picture from a half-an-hour visit. I’d really need to be part of Ms. Mallory’s inner circle to know what makes her feel better or worse. In other words, I would need to be a cat. Or speak feline. Neither of which are yet taught in veterinary schools.

Cross-posted to the blog at Talking To Your Doctor.

“I don’t know if I want to take this pain medicine,” people have told me more than once. “I want to know what’s really wrong with me and not just cover it up.” Or: “I don’t want to treat the symptoms. I want an MRI because I want to figure out the underlying problem.”

There is a dichotomy often used – especially by the people who asked me these questions – between “knowing what’s going on” and “not knowing what’s going on.” The more you think about these categories, of course, the more you realize that these conceal as much as they reveal. If we can determine that someone’s lower back pain is not dangerous, but (as in most cases) we will never figure out to what specific tendon or muscle the pain is due to, what does it matter that we might always be in the dark about the cause?

Or take chronic kidney disease, which has recently been reclassified: the cutoffs in kidney function have been changed for some of the categories. Not significantly, but now there are new routes to become diagnosed with the conditions, and new guidelines to treat it. If you had one kind of kidney disease before, and were told – after some tests – you actually had the other one, what was known before and what wasn’t? And what difference did it make? 

You can never know everything. Treatment has to start sometime. And, since treatment can lead to a better picture of the underlying condition, it’s never just covering up what is going on. Treatment and diagnosis always live in the creative ambiguity that is the organic muck of medicine. Sometimes I know what’s going on even before a word has been spoken. Sometimes I won’t know what’s going on even when the patient feels 100% better because of something I did.

Cross-posted at the  Talking To Your Doctor blog. 

1. Should I take an aspirin?

2. Should I take a medication for osteoporosis?

3. How often should I get a DEXA scan?

4. Should I see a specialist about this?

5. What’s the best test to keep me from getting cancer?

6. Can you write me a prescription for an antibiotic?

7. Can’t I just get an MRI?

8. What’s the difference between you and a family medicine doctor?

9. What diet can help me live longer?

10. Can’t you just order me some baseline bloodwork?

And a bonus:

11. Why is your hospital better than any other?

Five things I wished I said more often:

1. Look, it’s near the end of the day and I’m stressed. Can you remind me to slow down and listen?
2. Just because I am a radical skeptic when it comes to the utility of many tests doesn’t mean I don’t care about your symptoms.
3. Put your cell phone away, please.


4. Tell me something about yourself that doesn’t have anything to do with your illness.
5. What sort of person are you really, deep down?