Monday, September 19, 2011

SUDDEN UNEXPECTED NOCTURNAL DEATH SYNDROME

A couple of years ago I was chatting in the corridor of a university medical center with a cardiologist I know. Quite a personable physician, he's an associate professor of medicine, at the top of his craft.
I asked him one of the naïve questions I habitually put to my colleagues. "Tell me," I said, "do you ever think of your patients as soft-hearted or heavy-hearted? Stone-hearted? Heartbroken? That kind of thing?"
"Sure, my patients go through the same kind of social trials and tribulations everyone does."
"What I mean is: do you ever think they're telling a single story, not two? That their cardiomyopathy might express that they've been too big-hearted, or that their heart aches because of a great loss?"
Suddenly he remembered an appointment and marched off, leaving me to guess he was avoiding this conversation. Understandable, since after all, if you're a Catholic priest you don't want to be seen discussing Mormonism in St. Peter's cathedral. 
The September issue of Atlantic magazine reviews a book by Shelley Adler, Sleep Paralysis: Night-mares, Nocebos, and the Mind Body Connection (http://www.theatlantic.com/life/archive/2011/09/the-dark-side-of-the-placebo-effect-when-intense-belief-kills/245065/.) Part of the book describes the death, in their sleep, of 117 Hmong men who'd immigrated to the United States. They were posthumously diagnosed with "Sudden Unexpected Nocturnal Death Syndrome," or SUNDS. Adler concludes,
"It is my contention that in the context of severe and ongoing stress related to cultural disruption and national resettlement (exacerbated by intense feelings of powerlessness about existence in the United States), and from the perspective of a belief system in which evil spirits have the power to kill men who do not fulfill their religious obligations, the solitary Hmong man confronted by the numinous terror of the night-mare (and aware of its murderous intent) can die of SUNDS."
When you die of SUNDS, what exactly is the physiological culprit? No one's sure, but one hypothesis is a cardiac arrhythmia. Whatever the mechanism, though, the question remains: why that, and why in this person, at this time? I'd like to ask my cardiologist friend if these 117 men had troubled hearts before they died
SUNDS sounds like death by voodoo curse, doesn't it? Actually, it's known around the world. In Indonesia, it's called digeunton ("pressed on"). In China, it's bei gui ya ("held by a ghost"). The Hungarians know it as boszorkany-nyomas, "witches' pressure." If this phenomenon isn't exclusively native to the Hmong, it's worth studying not as a supernatural visitation, but as still further evidence that the mind affects the body.
Of course, we already know that. The love of our life enters the room, and our hearts flutter. A stranger is rude, and our blood pressure rises. Nine-year-olds have no trouble discovering this principle on their own, yet it seems totally alien to medical practice. We docs are trained to see human beings as biomechanical devices, organisms driven by genes, diet, hormones, and other physical forces, almost to the exclusion of influences from their inner world. It's as though we studied traffic accidents by taking cars apart, hardly glancing at the driver.   
Believing healthcare to be wholly a "scientific" endeavor, we suspend our common sense, deferring to those who regard only the measurable as worthy of analysis. I suspect we do that so readily because even though lifelong experience tells us that body and mind are inevitably connected, we have trouble entertaining an image of how that works.
Alright, try this. Look in a mirror. See your face carefully, imagining what this person is thinking. Now remember the last time you were angry. You'll see that in your face. In fact, recall anger and try not to display it, however subtly. 
We constantly speak what's called "body language." We can't stop. Try turning it off and a proficient observer will call you on it, saying you're trying not to express yourself, which, of course, is an expression. A simple body-mind model, then, is this: when you look at Willy's physical presence, you're seeing his mind in action. (It gets more complicated when Willy speaks, as the language of the mouth doesn't always coincide with that of the body, but that's for another day's blog.) 
Why not give this model a try for a couple of days? Look more carefully at others while mumbling to yourself the mantra, "Actions speak louder than words." Then report in, eh?

Friday, September 16, 2011

THE R WORD


When the subject of healthcare reform arises, I don't get involved much in its economics, since whatever plan we ultimately adopt will bankrupt us…unless we "ration" healthcare.

Ah, the R word. The phrase "rationing healthcare" is political poison, but what exactly does it mean?

When I was a kid, there was no such thing as health insurance. People paid for care retail, out-of-pocket, buying only what they could afford. Don't have enough money for that serum you need? Well, get a loan from someone or go without. To be fair, though, this was before the great blooming of medical technology, and care was much cheaper.

When insurance companies got into the act, they weren't going to pay for just anything, so they set up rules, guidelines, parameters. That's rationing, too. Medicare, which cranked up in the mid-1960s, did the same. In fact, any healthcare payer that decides to operate without payment boundaries will soon go belly-up.

So instead of flying into hysteria when we hear the R word, let's consider calling it what it actually is. This blog is loosely named after the title of a classic book by E.F. Schumacher, Small Is Beautiful: Economics As Though People Mattered. Schumacher's principal advice was to address problems in reasonable scale. His phrase, "appropriate technology," meant that you you don't need a 3,000 kilowatt power plant for an village well in India, that every home garden doesn't need its own tractor, and that every head injury doesn't require an MRI.
In healthcare, sometimes clinical judgment will call for expensive technological intervention, and fortunately, it'll be there when when it's needed. When it's not needed, it shouldn't be done--not because of "rationing," but because we'll be using technology appropriately. 

Thursday, September 8, 2011

LAPTOP MEDICINE


In today's NY Times Well Blog http://well.blogs.nytimes.com/2011/09/08/when-computers-come-between-doctors-and-patients/, Dr. Danielle Ofri observes that healthcare is the only major industry not fully computerized…and she doesn’t wholly lament the fact.

To me, electronic medical records (”EMR”s) are like steroids: useful and at the same time potentially hazardous. Steroids can ease symptoms, even save lives, and they can also cause diabetes, insomnia, personality changes, and a host of other horrors. EMRs solve significant problems in medical practice, being portable, transmissible, and of course legible compared to physicians’ notorious scribblings. On the other hand, as Dr. Ofri points out, "…both physically and psychologically, [the computer] has placed a wedge in the doctor-patient relationship."

I’ve griped aplenty here about how crowded the medical examining room has become. Fifty years ago it was a sanctum of intimacy, occupied only by patient and doctor. Then an insurance agent stepped in to verify that the company wasn’t blowing its money. Soon an attorney dragged a chair in, followed by the other party’s attorney. Then came a smattering of bureaucrats, pharmaceutical reps, and whoever else felt they had a stake in the proceedings. And now, the ubiquitous computer. I can’t even count the number of people who’ve told me how they resent seeing only the back of their doc’s head as he/she types into the laptop.

Neither is Dr. Ofri wild about having to favor machine over patient. She writes that she compensates by devoting more attention to the physical exam. “Once the patient and I have broken free from confines of the desk, with its dictatorial PC, we have a more comfortable realm, that of touch. As soon as there is skin-to-skin connection, conversation flows more easily. In the absence of a machine lodged between us, the traditional doctor-patient relationship is restored.”

Hallelujah! But, alas, there is then the matter of arranging diagnostic testing, medications, and appointments, all mediated by computer. So the personal aspect of the medical visit—the touching, the contact, the deeper conversation—is now squeezed between the computer-dominated beginning and end.

“If you keep going where you’re going,” a nurse once advised me, “you’ll get where you’re headed.” Let’s look where medical practice is headed. Let’s suppose practitioners’ compensation continues to get pared down, further shortening the average visit time (now less than ten minutes). Designers of medical software—smart folks who wish to free up the doc’s time—will develop more sophisticated products such that the doc won’t have to key in a coherent narrative, only select a macro—or even speak a command—and a fuller report will appear in the record.

If I were a software developer, I’d go further by wondering why the doc needs to get involved even eliciting a history when the patient can check off a list while in the waiting room, which is converted instantly into a history on the EMR. And if, as Dr. Ofri suggests (and I agree), the exam is less useful than the history in securing the diagnosis, then as a secondary function it can be largely automated.

I won’t shilly-shally here: the ultimate destination is what in my darkest moments I’ve long predicted: healthcare from vending machines. Excuse me, I mean “healthcare” from vending machines.

Dr. Ofri’s to be commended on mourning the intimacy lost to computers. In that feeling, I suggest, she represents the bulk of practitioners, physicians and others who harbor implicit reservations about EMRs. I think that's what accounts for why healthcare is one of the last American endeavors to be computerized.

Other strategies are available. Here’s one alternative, which I admit might sound outrageous at first: smaller EMRs. Virtually all diagnostic tests are easily digitized, but as for doctors’ notes, what amount, after all, do we need? I remember the chief resident on a ward of the huge county hospital where I trained, a young guy who was promoted to that position because he flat-out knew everything. He’d see patients with the most complicated medical problems and then sum up their cases with a single sentence, a short, elegant statement which allowed any knowledgeable reader to instantly understand the situation.

I admit I don't have answers, only a few itchy questions. I'd love for more people to be in on the discussion. We’re drifting toward a vending machine future because those who are most involved in healthcare, the two original examining room occupants, are all but silent, having abdicated the chore to people who design, well, vending machines.

Tuesday, September 6, 2011

SOMETIMES A USEFUL TOOL


Being in the listening/talking business, I feel like I've developed a dependable view of civil discourse's boundaries. 

For example, people generally say they'd rather not talk about death. It's morbid, icky, a total bummer. That is, it's taboo. To break the taboo is to risk being considered one of civilization's discontents. If that describes me, so be it, but I'll persist in it since it's a source of unending fascination and in any case a universal certainty.

Some folks with cancer have noticed that the "C" word is also widely taboo. Interestingly, as a powerful conversation ender, it can be used to one's benefit.

A friend who has cancer told me, "My social club came at me again. The president called to ask me to work the desk all next weekend. I told him I couldn't because my brother will be visiting. He said to just leave my brother home. Then I told him I'd too tired to do it, and he asked why I was so sure of that. There was no shaking him. Finally I had to play the cancer card. Told him my tumor was acting up, which it is, a little, maybe. Or could be. Anyway, he apologized and got off the phone fast."

Is that okay to do?

I used a similar ploy a year ago. I was soaking one early morning at a hot springs. The sun was rising over a silent paradise, and there wasn't another soul around. Then a big guy in a ten-gallon hat lumbered in.

"Hi, how you doon?"

I smiled and offered a pleasantry, hoping he'd move on. But no.

"Been here long? Where you from? How's that water, huh?"

I said, "I don't mean to offend you, but I'm on a silent retreat. I'd rather not talk."

He held up his palms. "Hey, that's cool. Nobody has to talk. Tell me, can you stay overnight in this place? What's it cost?"

"I need to let you know why I'm here," I said. "I have a terminal condition."

I don't have cancer or any illness, as a matter of fact, only the condition we all have. But hearing this, the guy was poleaxed. Like my friend's club president, he couldn't handle it. He tipped his hat and walked rapidly out.

If you play the "T" card, let me know how it turns out.

Saturday, September 3, 2011

MY SEROTONIN MADE ME DO IT


I'm shifting today into a more cerebral mood, questioning a principle many of us take for granted.

Let's start with an online item,
http://www.drugaddictiontreatment.com/addiction-in-the-news/addiction-news/addiction-as-a-brain-disorder/, which claims that a new definition of addiction might dramatically shift its popular image, much as the American Medical Association changed our view of alcoholism when it lifted it out of the gutter by defining it as a disease.

Following four years of consideration by eighty experts, the American Society of Addictive Medicine (ASAM) now defines addiction as "…a primary, chronic disease of motivation, brain reward, memory and related circuitry…" This new definition shifts emphasis away from behaviors and focuses more on brain dysfunction.

That is, addiction is now a brain disease. Indeed, there's evidence for this view. The website says, “Twenty years of neuroscience has proven that chemical changes in the brain can help explain the difficulty a person experiences when trying to break free of addictions even after detox and treatment.”

That’s a carefully worded statement. It doesn’t say chemical changes in the brain “cause” addiction, only that it coexists with those changes. Brain chemistry alterations are also associated with depression, aggression, meditative states, and a host of other emotions and behaviors.

It's easy, then, to jump to the conclusion that chemistry drives subjective experience: we’re hooked or blue or angry or in love because our neurotransmitters bend us that direction.

But it ain't necessarily so. In fact, conscientious scientists take pains not to state the case like that since—now, get this: no one’s ever proven a causal relationship. Nevertheless, hearing of such research again and again, we develop the notion that chemistry inevitably creates our experience. That's the view I was taught in med school. Our physiology professor called human beings “sacks of enzymes.” He insisted that all we can do is jump or spit—that is, operate muscles or glands. He said we’re nothing more than molecular contraptions, and that any consciousness we sense in ourselves is actually an illusion orchestrated by chemical play.

The point is critical. If we're to craft a style of healthcare as though people matter, we need to see ourselves as something beyond chemically directed gadgets. Fortunately, my professor's perspective isn't the only one available.

Another possibility is, strangely, the opposite, that consciousness drives chemistry. For example, the feeling of depression—or addictive craving, or anger, or any emotion—changes brain chemistry. In this view, we’re primarily emotional beings whose molecules tag along accordingly. When I'm peaceful, I release brain endorphins, not the other way around. (Of course, this looks more complex when, say, we fall into a longterm depression; the consequent depression molecules, so to speak, become resident enough to create a vicious cycle.)

A third possibility is that chemistry and emotion are two profiles of one single phenomenon, like lightning’s flash and thunder. Neither causes the other. The problem with this view is that it admittedly can’t answer the question of where human behavior ultimately comes from. If you find yourself in this camp, you need to get comfortable living with mystery.

So what's the answer? Are we primarily chemical gizmos, emotional beings or utter mysteries? Sorry, but there’s no way even to reliably research the issue. Think about that. How would you devise an experiment? You’d necessarily have to include subjective consciousness—a messy business, what with its time lag and questions of interpretation and honesty—in a project you’d prefer to be cleanly objective. 

So we can't know, but still need to live a life. So we choose, and can choose only from preference. How do I wish to see myself, as having free will or as trapped by my chemistry?

I don’t raise this issue just to exercise my intellect in order to stave off dementia. The fact is that our choice of self-image dictates our behavior. If I view my obesity and type 2 diabetes, say, as something visited upon me by a quirk of chemistry, I'll likely feel powerless to personally challenge it, and instead put myself in the hands of chemical engineers. But if I understand that it results from decades of chosen behavior, I might decide deliberately to alter my life.

I've long ranted here about how illnesses in America are so commonly based in lifestyle. Everyone's capable of converting their behavior from pathogenic to healthy, but only provided they sense the personal power to do so. Too much of medical practice amounts to enabling neurosis, and that itself isn't healthy. We'll do better as we realize that chemistry isn't our master, but our servant.