Three cheers, and a minor quibble.

I am here to praise Caesar, not to bury him.

Well, not Caesar, really; the good Dr. Makari is my subject.

I saw this in the NYT a few days ago and found myself singing hosannas. The upshot is that in the relentless push to destigmatize psychiatric illness, our fearless leaders decided that we must stick to the party line that psychiatric conditions are diseases, and diseases are biological, and the organ affected is the brain. Therefore, since diseases are “real,” we could convince everyone that the stigma is irrational. It didn’t work, near as I can tell.

Dr. Makari takes this apart in a thoughtful, cleanly-argued way with the obvious authority of a clinician. Hats off, doc.

Not only do I think this failed, I think it played into the wrong hands as well. One way it’s done that is to reinforce the idea that psychiatrists do the “biological” stuff and other people do the other stuff. Which means psychiatrists are paid to spend 15 minutes with their patients asking strictly about doses and side effects, rather than dealing with the actual complexity of psychiatric cases.

This is another post, but I rather think many of our troubles in health care stem less from not considering the biology of psychiatric illnesses; but rather in not thinking of medical conditions in the way we have considered psychiatry. Do we really think that increased education, social support, and reinforcement of functional behaviors works only for psychotic disorders, but not for diabetes? Don’t you believe it. The best cardiologist I ever saw spent about 1 minute talking about cholesterol meds, and about 10 minutes going through people’s diets and how much time they spent sitting. (The guy could smell an anxiety disorder from five rooms down, too. A true Jedi, that one. Our loss, cardiology’s gain.)

My quibble, though, is with the universally cited, nearly universally misunderstood, and sadly misapplied “biopsychosocial model.” Dr. Makari seems to be telling us our failing is in not adhering to it. I think our failing is that we still try.

My quibbles are both practical and theoretical. The theoretical one is that it’s not a model. It makes no testable predictions at all. If it does much that is useful, it might define different levels of explanation, and encourage us to consider each possible level in dealing with a clinical situation. I’m not sure that’s any better than simply being told, “You should take everything into account.” I call that good advice, not a model.

The practical gripe, which is more a problem with us than the model itself, is that we just renamed dualism so we could feel a little better about it. I take as evidence the constant use of the word “psychosocial” in medical parlance, as in, “We must also consider the psychosocial component to this.” Note:

  1. The psychosocial component, as if there is only one.
  2. Ever hear somebody talk about the bioppsychological aspects? The sociobiological aspects? Me neither.

A teacher of mine, a highly experienced consult-liaison psychiatrist, once facetiously remarked that there was a monosynaptic reflex in internal medicine residents which linked the recognition of a psych thing with a call to the psychiatry consult service. I think “psychosocial” has turned into the psych thing of our medical culture. It means important, but not-disease, not-quite-medical, not us.

So we now have an implicit dualism renamed in “biopsychosocial” terms. This breaks down quickly in real life. In addictions, there’s a pill called disulfiram. If you drink, it makes you sick; and it’s given to people with alcohol addictions to deter them from drinking. It is, basically, a pharmacologic implementation of something like punishment or an avoidance schedule. So it’s a behavioral intervention that is done by altering the person’s alcohol metabolism. In what box do we put that? Biological? Psychological?

We could go through similar thought experiments with stuff like methadone, bariatric surgery, psychotherapies for headache, and on and on.

Dualism by any other name is still dualism. It didn’t work, but renaming it doesn’t mean we dumped it. You replace ignorance with understanding, not reductionism and marketing.

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He makes me wish I was a guy

My resident said that the other day, right after a patient of ours walked out of rounds.

The patient was a man who acted even younger than he was. I had met him before, and like everyone else on my unit he was wrestling with an addiction.

From where I was sitting, he was making progress. The first time I met him he couldn’t keep his mouth in check to save his neck, and he had a critical word for everything from staff’s interpersonal skills to the clinical management on the unit. While thus acting in loco JCAHO, he found himself too busy to make it to many of the therapeutic groups; though he found tremendous therapeutic benefit in the big-screen in the day area.

He did what young people who act that way tend to do – left the unit with a crappy plan and then relapsed post-haste, to return some time later looking even more beaten up. Such is the nature of the beast.

It could have been worse. First off, he was still alive. He didn’t stay out all that long before he came back, and he left with a (slightly) better plan. After some frank discussions with the nurses about the value of keeping one’s mind on business, he seemed to spend a bit less time talking about others’ failings and more about what he should be doing. He even reduced the F-bombs to every fourth sentence, thus perhaps improving on my performance in that area. Still, this was gradual improvement; nobody would mistake this admission for a life-changing epiphany and there were no shafts of light and celestial choirs to be noted.

So, really, this looked like business as usual to me. Then, on the last day as he was walking out the office, my resident said that.

My first reaction was that was a really odd thing to say, and I had no @#$^ing idea what that meant. My second was to notice that every other person in the room obviously did.

A thing you might want to know is that, as usual, everybody on my team is female. That could just be a consequence of demographics. Both nursing and social work are female-predominant professions and doctoring is going that direction too. It’s happened so many times in my life, though, that I suspect there’s something more to it – like how I kept winding up with the really chronic, refractory patients when I was a resident; while one of my crew who ended up treating eating disordered patients had a waiting room full of thin, depressed young women. Your people tend to find you, or vice versa, and there’s some funny juju to that.

As mentioned, it became instantly clear that something was going on that was utterly obvious to other people and lost on me. I employed the combination of odd facial expressions, quizzical noises, and curse words which my team has come to understand as a request for clarity.

My resident splained it for me. (This may be irrelevant to the point at hand, but she is aces. Sharp, thoughtful but quick, with that intuitive diagnostic sense that marks the true Jedi.) This isn’t verbatim, but I will try to get it close:

“I talk to him and he’s so flirtatious and it just never stops. He does it to all the women. Sometimes I just wish I was a guy and I didn’t have to deal with it.”

Again, every other head in the room seemed to be nodding. One looked downright disturbed, now that it was said out loud.

Doing psychiatry changed me in a lot of ways. I look at things with a slightly different set of eyes. It also has knocked a lot of humility into me. It is tremendously easy to make judgments about others until you have heard their story, and wondered, if I started out that way, would I have ended up any differently? Appreciating the complication of human life is hard unless you’ve had an inside view of so many of them. Yet, here I sat, with my much-vaunted perspective and skill in observation, in a room full of people who I work with constantly and who bail my a@@ out of trouble on a very regular basis. Every single one of them was going through something right in front of me that I knew absolutely nothing about. Suddenly I had this feeling that  we were in some Star Trek episode where we were slightly out of phase with each other, in some overlapping not-quite-the-same realities.

I have never once had any patient encounter in which I could walk out and say, I really wish I was a girl so I didn’t have to deal with this crap. Sure, I have dealt with my share of female patients with warped transferences – from the needy and dependent to the psychopathic and manipulative. Usually, though, the tricks are more along the lines of Oh, you’re so very very smart and handsome Dr. C. Thank you for your brilliant advice. Sometimes consciously manipulative, sometimes just an automatic pattern. Yet very seldom dismissive. If anything, the opposite.

I flashed to a time when I called this guy on his language. More than a little hypocritical, I know, but I do try to clean it up in public. He walked out of the room with his eyes down and the last words he said were, “Yes, sir.” I could joke and engage him, but if push came to shove I could also pull out the, “I have the grey hair and the letters after my name so settle down, kid,” routine and it would probably work, at least while he was in front of me.

As it turns out, that probably had less to do with the grey hair and the letters, and instead was about having a Y chromosome.

I started thinking what it would feel like to be capable, experienced, wise, and loaded with general badassery as all these folks on my team are, and yet to be standing in front of an immature misguided young man who nonetheless treated me like somebody he was trying to pick up at a bar.

It felt really, really icky. I-need-a-shower icky. Then the more I thought about it, the more it made me mad.

This would be the place where a large proportion of the population will be slapping their collective foreheads at my naivete, and I certainly have to cop to that.

I am not sure I have a point in this other than being slightly dumbfounded at my own ignorance. I have the strong sense I’ve been doing something wrong. I don’t quite know what, and it’s not coming clear to me yet.

I think this is going to be on my mind a while.

Another coffee time grump.

I was slurping down my third cuppa while waiting for my resident to finish an evaluation and reading a column by Kristof in the New York Times.  It was a commentary on a book which I should emphasize I haven’t read. It’s a rough story, about a child who had some serious problems. Right up at the top was this:

When he was 5 years old, a psychiatrist prescribed Ritalin. As he grew older, he disrupted classes and was given a growing number of potent antipsychotic and other medications.
These didn’t work, so he was prescribed more. Pushed out of one school after another, Andrew grew frustrated, unhappy and sometimes alarming. His parents hid the kitchen knives. Then his mother died at 54; the family believes that the stress of raising Andrew was a factor.

The book was by the father of this boy, who is a pharmaceutical company insider. As you might expect by now, things went badly. The child had a rare complication of medication treatment and wound up dying.

Kristof took the pharmaceutical industry to task for a number of things for which I think they richly deserve a task-taking-to. Drug companies are now pushing to be able to market off-label indications, which both Kristof and I think is a bad idea.

A drug is used “off label” when you’re treating a disease or symptom that it wasn’t FDA approved to treat. This happens often in clinical practice, which may sound shocking but is really not so sinister. For example, divalproex is a drug used for seizures. Turns out, it works for manic-depressive illness as well.

Divalproex was on the market a long time to treat seizures. It is neither the safest nor most dangerous drug on the planet. It does have my favorite safety feature: A long, long time on the market. That’s how you find out about the rare, weird complications that don’t show up even in large clinical trials.

There are some weird things about FDA indications. For one thing, a drug that works for many aspects of a disease can have an indication for only one. Divalproex has an FDA indication for treatment of acute mania. However, there’s good evidence that it works to prevent future episodes as well. Now, if you treat someone for mania with divalproex you’re treating for the FDA indication; but if you keep her on it after the mania resolves you’re off-label. Which still is, in my estimation, an evidence-supported strategy.

Back to the article. My reactions were, in rough order:

  1. Huh. Ritalin. They must have thought he had ADHD.
  2. Wait a minute, antipsychotics? Multiple antipsychotics? That doesn’t sound like ADHD. This kid sounds like he was pretty sick. Early onset manic-depressive illness? Maybe. Pediatric schizophrenia? Rare as hen’s teeth, but maybe.
  3. Hiding knives? Frustration? You talk about the family of a child having to hide knives from him like frustration is a reasonable explanation for that?! Are you nuts? Are you listening to yourself?

I’ve often said psychiatrists look at things with a different kind of eyes. In this case, mine were looking for the diagnosis. Kristof’s seemed to be looking for the understandable causes and finding them – a hard time in school and weird drugs, apparently. Mine were seeing nothing at all understandable here.

The trouble with looking for understandable things is that we’re really good at finding them even when there is nothing understandable. You can play a recording backward and hear “Satan wants you to eat your babies” in the static. You can turn a puff of ice crystals in the high atmosphere into a sailboat.

You see, if you’re going to imply something improper in how somebody is treated, and that drug companies are producing that impropriety, and you want to maintain any kind of intellectual integrity, you have to talk about whether the treatment makes sense for the condition being treated. That means you have to know what is being treated. That means listing stigmatized medicines as if that is prima facie evidence of bad treatment doesn’t cut it. That just looks like you’re playing to the “psychiatric medicines are scaaaaaarrrrryyyyyy” crap that all our patients have to wade through on the way to getting adequate treatment.

I don’t want the drug companies to be able to advertise off-label because I think it keeps them halfway honest, and letting them advertise to the general public has been a bloody fiasco. I don’t like the way they influence doctors, and Kristof’s point on how they contributed to the opioid epidemic is solid, though I’m not so inclined to let doctors off the hook on that one.

However, I do not want to be making that argument by talking as if a horribly ill kid was just having a rough time at school. I do not want to make that argument by implying that putting horribly sick kids on medicines by itself is evidence that it is a terrible and sinister thing to put horribly sick kids on medicines. Because that is simply playing into the hands of stigma and ignorance.

Here’s what I think we should do:
  1. Stop the drug companies advertising, particularly when they masquerade as “education” about illnesses.
  2. Stop putting the studies for getting FDA indications in the drug companies’ hands, so they’re not about advertising points. For example, can we stop having some company to be able to advertise “The only drug approved for cyanodermia in Malignant Lilluputian Cyanodermia Syndrome” when there are four other drugs that work for the entire syndrome, that don’t have a big manufacturer behind them to do that one targeted study just to be able to make that commercial by getting an FDA indication for that one symptom?
  3. Following 2 above; how about we start using publicly-funded research to speak to what the best thing is for the patient; rather than just that one more medication works for the disease? For example; which medicine do you start with? Which one do you use when that one fails? We have books full of me-too meds with mostly meaningless FDA indications.
  4. When well-meaning crusaders start spitting out arguments that reek of stigma and science denial, even when we agree with their goals; disagree with the means while agreeing with the ends, and offer more realistic argumentsWhich I just tried to do.

Moar coffee.

Just a little rant.

In the last few days I have had several of the following experiences. They are not unusual, just unusually concentrated in time. I have altered things, but this is representative.

I saw a patient some weeks ago with a significant depressive disorder. Not get-thee-to-a-hospital severe, but also not a time to mess around. He also has chronic pain. There are a set of antidepressants that work for chronic pain. There are a subset of those that have fewer side effects. There is one in that subset that can be titrated up to a maximum dose in two steps (rather than the three or four others might take). I run through all this with the patient and the choice of pharmacotherapy is made. Yay team! We’re on the road to wellness.

The next morning, in my box the pharmacy fairy has deposited a request for “prior authorization” for said medication. Which also means my poor patient showed up at the pharmacy and couldn’t pick up his medication.

I get somebody on the phone. She is neither a pharmacist nor a physician. She simply asks the following questions: “What was the medication?” “What was the strength? (i.e. dose),” and “Have you considered anything on the formulary list?”

Noteworthy in this conversation were:

  1. When I said I had decided on the medication because reasons, there was no corresponding, “You know, Smurfatrol XL (little R-in-circle thing) might do about the same thing and it’s more affordable.”
  2. The reasons clearly did not matter either. I could have said, “Smurfatrol causes Malignant Lilliputian Cyanodermia, and that risk is unacceptable in this patient,” and the person on the phone would be none the wiser.
  3. She was utterly stunned when, just to be a good sport, I asked what was on the formulary list. I’m not sure anyone ever even asked before.

In other words, this was entirely form, with zero content. My patient couldn’t pick up the medicine because I had to first call someone in a call center to read off exactly what was on the prescription

A week later, the patient came in and told me after all that, he hadn’t been able to pick up the medication from the pharmacy and had not started the treatment. So much for being able to move faster.

Experience 2:

I have a patient who is taking 150mg of ectavan (not a real drug), and I’ve told her to use 1 ½ tabs of 100mg each. I did this because the only other way to get a 150mg dose would be to prescribe 50 & 100mg tablets; which would wind up being more expensive overall and make the patient pay two co-pays. I always write prescriptions as generic.

With me so far?

She’s been taking this medication for months, when again the pharmacy fairy drops a love note in my box in the form of a 1 – page fax form for authorization. Mind you, this medication is exactly the only one in its class. There is absolutely no other medication available on the market that does this. It has also been approved for months on end.

I dutifully fax this waste of my time, only to hear two days later that was disapproved.

I am now, officially, p@#&ed off. There is attempting to control medical care costs, and then there is just straight-up $%#$ing with me and my patient.

I’m back on the phone now.

Again I go through the dance, and at the end of that we have this exchange:

“Did you consider the generic Vantec?”

“I have always written the script as generic. I don’t care what brand it is.”

“OK. We can approve the generic.”

Success! I didn’t even have have to imply an abnormally intimate relationship between the medical director and a close relative! Not out loud, anyway. Problem solved.

Nah.

A day later my patient shows up only to have the pharmacy tell him he can’t pick up the prescription.

Care to know why?

No, you really, really don’t.

My patient finally walked away with two co-pays, having to take 3 capsules per day when previously she had one copay and 1 ½ pills per day. If you look up these meds, this new regimen would cost $500/month. The previous one costs a hair over $300. So maybe the payor figured some kind of sweetheart deal, but I’m guessing they’re not getting the 40% discount it would require them to break even on that. Not to mention the time they have to pay the people to read faxes and listen to physicians implying abnormal family relationship dynamics for their medical directors.

Pervading all this is the sense of absurdity. I am a physician who, by and large, takes care of poor people. I think a lot about what they can take and what they can’t. I spend a lot of time thinking of the cheapest thing I can prescribe. People don’t need one more reason to not take their medicine.

I see insurers creating barriers to health care which then require health care institutions to produce countermeasures which then cost more and get taken out of someone else’s pocket. The costs of all this prior authorization stuff, in terms of payors’ staffing and such; as well as doctors’ time and office staff, is probably in the low tens of billions from what I have read. 

One would really, really hope that all this crap would be worth it. Personally, I can’t tell it is. It seems to me that the system of cutting medical care into little monetizable widgets and then trying to force people to use fewer widgets hasn’t changed much, except to create new jobs defining and pricing the widgets. While all that’s going on, the prices of the widgets keep rising way faster than any efforts to reduce their use. It looks to me like whatever real savings we get out of this may just as well be due to people just not getting treated.

It’s mutually assured destruction, applied to health care. This thing is coming apart at the seams.

Shower thoughts over coffee.

As I sit through my fourth cup of coffee eating a mooshy veggie burger at the hospital coffee joint, something keeps rattling around in my head.

I have training and experience in both pain and addictions, and I go back before our current prescription opioid epidemic. This really followed a typical pattern of a drug epidemic; the greater availability and high potency of the “new” version of the drug class, the perception of greater safety, the dissocation from the stigmatized population, etc. We’re working our way through it, and right now as everyone’s trying to get their thumbs into the dam controlling prescription opioids, the second wave is starting. Some will enter recovery, some will convert to the endemic heroin and we will see all the ugliness that comes with that; new HIV and hepatitis cases, and all the social disruption.

As that settles out marijuana is now legal in many places, talked about as if it is “medicine” though we’re not really sure how well it works – that partly because doing any real research on it is very, very hard due to government policy. Despite all this talk about it being “medicine” it is remarkably divorced from the medical system. Scheduling, regulation, even the necessity for an actual no-kidding prescription. It’s also funny how quickly after it’s medicalized-but-really-not we find greater acceptance of its use recreationally.

I have all kinds of thoughts on this, but one thing keeps clanging in my head. I gather there is a strong economic argument that legalization (which is a vague term if you think of it, ranging from laissez-faire to repenalization) is a good way to manage the problems of addictive drugs. I rather like some versions of a repenalization system myself. It might take the steam out of the illicit drug trade and reduce some of the crime associated with that underground economy. However, what happens to the prescription regulatory system?

It strikes me as an odd thing to decide that once we understand that a drug is addictive, it should then become less controlled and regulated than, say, an antihypertensive or an NSAID. Do we simultaneously allow people to buy oxycodone in a 7-11 while requiring patients with pain to go to a doctor? Right now, there are places where you can buy cannabis in all its weird chemical complexity but you have to have a prescription for purified, tested, pharmaceutical grade cannabinoids.

I do not pretend to get all the policy implications of this, but I do like people who advocate a position to be able to tell me how it would actually work, and I don’t think I’ve heard that from folk who support decriminalization, including for cannabis. I also wonder a bit about where responsibility lies. If a clinician prescribes a drug there is a clear chain of responsibility, but if someone “recommends” a drug with no clear indications which a patient could buy anywhere for any reason, where does responsibility lie? Do we just live with the “pill mill” down the way?

Moar coffee.

Dimensions, Diseases, and Bad Medicine.

Imagine you have a child who has a full scale IQ of 70. This means that about 97.5% of the people on earth will have a higher IQ score than she does. She doesn’t have any particular illness or syndrome that accounts for it; she just happens to be on that end of the distribution of human cognitive capacity.

It doesn’t mean much about her worth as a human being, of course. I’ve met people who have IQs around 130 that I would personally feed to Walkers in the event of a zombie apocalypse. Intelligence – if it exists – is a capacity, not a virtue. You can use your brain to cure malaria or you can use it to run a billion dollar Ponzi scheme.

It does mean she’s going to have problems other people don’t have. She won’t get as far in school and she will have more trouble finding work. She’s probably not going to make a whole lot of money and will be more at the mercy of the cold world than most. She’ll need more help from others, and your grandchildren may not start out as well as they would otherwise.

Now imagine there is a medicine that for a solid part of the day let her operate as if she had an IQ of 85, or maybe even better. You will notice a difference. So will she, and her teachers, and her employers. Her paycheck. Your grandchildren’s home life.

Imagine, just for giggles, that medicine might even protect her from addiction and getting into serious accidents.

Would you give it to her?

Whichever answer you pick, does that make you a bad parent?

This article came to my attention through an old family friend. It’s about ADHD, written by a psychologist who asserts that there are a lot of things that are different about ADHD in France.

ADHD is a plenty controversial subject. There is plenty to controverse about. It’s a gender-biased diagnosis, which makes you wonder whether it’s a legitimate gender bias (like breast cancer) or some subtle and harmful stereotype being played out in the medical field. Then there’s the question of whether we are “medicalizing bad behavior” and these kids need behavioral interventions and discipline. The flip side argument is maybe we need to develop more tolerant systems to handle kids with different behavioral and learning styles.

Tricky stuff.

One of her core argument I will dispense. That is the idea that the American lifestyle, loaded as it is with TV and toxic food, is ADHD-o-genic compared to the French. I don’t buy it. The prevalence of ADHD symptoms in kids, and the number of kids who meet criteria for the disorder is pretty similar almost everywhere you look. A big component of risk is genetic. Prenatal alcohol exposure and smoking probably matter; and lead toxicity is a clear cause. There may be some effects of food colorings and such, though it’s less clear if FDA approved stuff is bad, and it also looks like they might have something to do with hyperactivity in general, but perhaps removing them only helps some kids diagnosed with ADHD. If there’s a reason prevalence estimates vary, though, it’s most likely differences in methodology for making the assessments. Studies that are designed so they likely undercall the diagnosis do so, and vice versa.

I also find fault with those who say it has no biological basis and start arguing how it’s caused by “toxicity.”

The author of the article (and book) later said that ADHD is a collection of symptoms with no biological basis, and therefore “socially constructed.” Another tricky word; used as if a synonym for “wrong.” A collection of symptoms (and signs) that go together in time and place in medicine is called a “syndrome.” The author lists out the symptoms of diabetes (mellitus) and says that’s not what diabetes is; i.e. the syndrome is a consequence of diabetes, not the thing itself, which is a problem of glucose metabolism.

Which, following the logic, means that diabetes mellitus did not exist until at least the late 1800s, when removing a dog’s pancreas was shown to cause it, which over quite some time led to the discovery of insulin. Apparently, those descriptions of the syndrome written down 3500 years ago were something different, because then it had no known biological cause.

When I talk to my residents, I call this the “Excessive Eye Blinking Disorder” problem. Let’s do a little thought experiment:

Imagine you found that there is a group of people who blink their eyes 30 times or more per minute (as opposed to 15 times as average). 

Question 1: Is this a disease?

Then let’s say somebody puts these people in some souped-up 600 Tesla neuroscanner and discovered that they have a cluster of neurons in their motor cortex that are overactive relative to people who blink at an average rate.

Question 2: Now is it a disease?

I hear this in the media all the time. “People who act differently have just been found to have slightly different brains. Clearly, what we once thought was ‘psychological’ is truly  ‘biological.'”

In truth, finding a difference between the brains of people who act in two different ways should be viewed as what it is; entirely trivial. Of course their brains are different. Of course the eyelid motor neurons of people who blink twice as often are more active. Duh.

The existence of the difference is no surprise, and as in diabetes, it mostly depends on whether you have the right technology to find it. Stuff doesn’t become real as soon as you have an instrument fine enough to find the biological difference. It’s there, and eventually we get the right microscope.

Sometimes the microscope gets good enough to suprise you. “Diabetes” isn’t one thing. Sometimes it’s due to destruction of insulin-producing cells (Type I), sometimes insulin resistance (Type II).

Last point on this and I’ll stop beating this horse: We seldom find the “real cause,” and when we do there’s often a lot of uncertainty about all the steps in the chain. If we waited to find the “real cause” to call something “real” or a “disease” we would almost never get there. Case in point, Type I diabetes. First you find out it’s caused by lack of insulin. Eureka, we have the cause! Wait, why do you lack insulin? Eureka! They have no islet cells in their pancreas! Wait, why do they have no islet cells in their pancreas? Eureka! It’s due to autoimmune destruction of the cells. Wait, why the ever-loving #%$& does their own immune system destroy those islet cells?

So a set of symptoms and signs doesn’t make a disease (though it’s necessary), demonstrating a difference between two groups of people on some dimension doesn’t make a disease, a biological difference between those two people doesn’t make a disease, and in practice we don’t wait around to find the one twue cause if that’s even possible. We expect diseases to cause dysfunction or suffering, but we don’t define everything that causes suffering as a disease. Some of these things are necessary, none are sufficient. What makes a disease?

Maybe, just maybe, there is absolutely no such thing as a disease out there in the world. Maybe, in fact, “disease”  is…..

wait for it….

Socially constructed.

Maybe it’s a concept with a relatively clear center with archetypes we can all agree on; but very, very fuzzy edges. Pneumonia? Yup. There’s a qualitative difference in where bacteria are growing, it is clearly linked to the symptoms of the disease, and causes dysfunction and even death. Prototypical disease. Still, though; the disease is in the eye of the beholder. No bacterium growing in your lungs thinks, “Huzzah! Back when I was on that piece of bread I was a lowly bacillus, but now I’m a disease!” Nah. It’s just happy in a warm place with nutrients and water.

Another thing that doesn’t make it a disease: Having a pill for it. Caffeine can improve some cognitive tasks (though it’s really complicated). Is everybody who is two cups behind demented?

Not counting me. I heard that, smarta@@es.

I think this is far, far less about what’s “real” than it is what’s “right.” There is a very, very strong moral tone to a lot of these articles and positions. You do need to know what’s real to take an ethical approach to it, though.

I think there’s a fundamental assumption that if it fits neatly into the disease box, disease = biological = biological treatment. Also, in some cases, maybe it doesn’t have to be a disease, but it does have to be “biological.” If we were to think it through, hypertension and obesity both might fit these bills. We are quite happy to look for medicines for these. In the case of severe obesity, we even re-arrange people’s insides surgically, and it works. Maybe they are not diseases, but at least they’re not “psychological,” and doing something about it improves people’s lives. In some cases, a whole lot. This is not helped by the fact that people who want to treat something have to dress it up in syndromic, disease words to get paid to treat it. That’s another post.

If it doesn’t fit the disease box, and particulary if it’s “psychological,” treating with medication is “medicalizing.” It’s reductionistic, manipulative, and dangerous. There is something to be careful about here, though. Higher brain functions seem to be where we put the self. Moral worries about altering the self of someone else sure are worth a thought or two.

The evidence so far as I read it is that ADHD is a dimensional, not qualitative, difference. It may fit awkwardly into the disease box, but there are objective measures of its severity and plausible biological correlates.

Interestingly, I seldom hear the argument that people who meet criteria for ADHD don’t need some treatment. Usually it’s about medication versus other things. That’s a legitimate question, so long as we agree that better is better. That sounds easy, but implicit is the question of how much better counts as better. You can’t have better is better unless it’s from medicines in which case it isn’t really better.

You can decide that there is some threshold of problems that deserves clinical attention. You can decide what counts as a meaningful level of improvement. You can figure out which treatments have a decent chance of achieving that level of improvement. You can quantify the risks of those treatments so people can make an informed decision. You can even compare treatments to see which ones do better.

We’ve really done most of that, or at least we’ve got a solid start.

I suspect our problem is this: As a culture, we have not answered the question: When is it right to alter the mental function of someone who is on the far end of a brain-based capacity with medication, when being on that end clearly causes bad things, but that does not easily fit into the category of a disease?

What would happen if people spent their time figuring that out, instead of talking about all these different versions of “real/legitimate vs. imaginary/contrived?” What would happen to all the victim-blaming, parent-shaming, and conspiracy theorizing about doctors? Could we be more compassionate, and maybe even less likely to do all those things people say they’re concerned about; like stigmatizing unjustly, mistreating, and overtreating?

I tend to think so.

Here’s my answer to the question I just posed, because I think you always have to take your own dares. I think it’s ethically correct to do so when the intent is to remediate an impairment rather than to enhance normalitywhen there is minimal threat that the person’s self will be fundamentally or permanently altered, and when the person involved understands what is being undertaken and consents to it.

If I were to think about it more, I might come up with other ideas. The floor is open, if anybody wants to set me straight.

The One with the Problem

Carroll’s Second Law of Psychiatry: The patient is the one with the problem.

I was at one end of a table in one of the best addiction treatment programs in the country, and at the other end was one of my counselors. For those unfamiliar with the addiction treatment system, addictions counselors are the footsoldiers of righteousness in an ongoing battle against the darkest evil of the human heart. It’s mainly a bachelor’s level job, filled by young idealistic people on the way somewhere else or more experienced people who are often on a mission; and armed with that four-year degree and accompanying inadequate salary they stand in the gap between redemption and some of the worst human depravity you will never hear. This also provides them with some absolutely bitchin’ happy hour stories.

My kind of people.

This particular counselor was a young fellow, whip-smart; quiet and calm and dedicated. We were discussing a patient who, while so far testing negative for drugs, was floundering – not showing up to groups, missing counseling sessions. Not often, but consequences were piling up. Consequences that could eventually lead to the patient exiting the program. Which meant almost certain relapse.

I asked my counselor what was going wrong. He told me a story of how he had messed up the case. He hadn’t paid close enough attention, he had missed a couple of opportunities to remind the patient of groups, he hadn’t appreciated how frustrated the patient was getting with how regimented and unyielding the place was.

There were a lot of people in the room, but this story was being told to an audience of one. In the scales balancing justice and mercy, I was the linchpin. I was either going to tell my counselor to drop the hammer on the patient and require him to do more groups, show up for his counseling and so forth;  or cut him some slack and give him some room to get himself together before he lost the one thing that was holding him together.

I’ll be honest with you (that’s a later post): This is not the least bit paraphrased nor edited. I said:

“Smart Quiet Passionate Counselor I Really Like (not his real name), you have been manipulated.”

A minor digression (you’ll see that to which I am up soon): In disorders of learned behavior, the patient, to one degree or another, wants to do something that is bad for him. That’s not to say he doesn’t want to stop it, by the way. You can want your cake and hate your waistline. Conflicting goals and desires is the human condition. For most of us, thankfully, it’s just chocolate cake – not crack cocaine. Judging by the line at The Cheesecake Factory, it’s a good thing, too. We could have a full-on Walking Dead situation.

So you are dealing with this fundamental glitch in human nature – that immediate, reliable, transient jolt of yeah, baby can take over a human life and steal a human soul. Little decisions to do some little thing over and over again, until your life organizes itself around that little thing; raising the pipe to the lips, the powder to the nose, the cigarette from the pack. Reducing a human life to a bad EDM set on endless repeat.

So that little thing starts taking up more and more life space – time, money, attention. That means other things get slowly crowded out – like responsibilities, family. Slowly, insidiously, decision by decision, cop-out by cop-out, lies and manipulation creep in. Again, that’s not to say somebody starts out wanting to be a liar or a manipulator.

People early in recovery have to manage such a load of self-loathing it’s hard for others to fathom. Imagine coming out of a haze one day, looking around, and realizing that not even your parents are willing to put a roof over your head in winter because they can’t trust you in their house.

Then imagine that you know they are absolutely right.

It is a monstrous thing to acknowledge you sold your soul ten bucks at a time for two decades, and it’s going to cost a hell of a lot more than money to get it back. The folks who manage that, who come back from that, are a fascinating bunch. They have probably taught me more about the good in human nature than anybody else. They are the reason I’ve stayed in the addictions world for so long.

That early blast of shame and remorse, though, comes just from seeing the things you know you’ve been trained by the drug to do. Yet more insidious is the ice under the water. All the little things that you do that serve your addiction, that you don’t even know serve your addiction.

Back to my counselor.

I started asking questions about our patient.He was a likeable, pleasant guy. He had put together several stints of abstinence, maybe six months at a time. Early in these periods he would be a model citizen; uncomplaining, reliable, enthusiastic at whatever occupation he found himself. Then stuff started to go wrong. Once people liked him and he was doing everything right, he started to slide. At which point all these people found ways to fill in for his minor, completely understandable mistakes. Until the occasional mistake turned into the continuous lateness, missed commitments, and then relapse. After which he became an unreliable cloud of lies and excuses, and left all those people sick of his bull@#^* and unwilling to lift a finger for him. Cut to scene of gaunt, ill, haunted looking guy with nobody and nothing, ducking into a boarded up house in West Baltimore.

Now here in front of me I have my counselor. The counselor of a pleasant, reliable patient who’s doing the right thing, mostly. A counselor who just keeps forgetting little things like reminding that patient about the group he missed last week, or to be on time to those appointments. 

Addiction is a vicious, sneaky bastard. Sure it will magnify your weaknesses. Its true evil, however, is in its capacity to turn your virtues into vices. It twisted our poor patient into spending all the goodwill he obtained early in his recovery to have other people cover for him while he relapses. In the process, it cost him every single one of those people.

What might happen, one wonders, if somebody who cared about him were to redefine the situation for him? To not accept the role of the one who helps him by bailing him out; and instead to ask how did he get me to act just like his old boss, his mother, his sister? How did he turn me into the guy begging for mercy on his behalf while he gets closer to a relapse?

What if, in fact, that is his relapse? Relapses, you see, happen well before the money and the pills change hands. They are a departure from the behavior pattern of recovery, and a slow return to the behavior pattern of using.

It’s a lesson hard learned. Doctors, counselors, therapists, the lot of us want to help. Patients, mostly, want help; at least the ones who keep showing up. The addiction, though, it wants to come back. It wants to turn you against each other. It wants to twist your head around into thinking that giving it room to sink its hooks into him deeper is helping him out. It wants to convince him that asking for a hand up from that nice counselor is a way to get back on track, instead of a way to go further down the wrong road.

Anthropomorphizing much, doc?

Yeah, I am. I’m an obstreperous cuss. It’s my job to see what’s happening. One way I can do that is to decide to be an opponent, not a pawn. I hate to get beaten. It keeps my eyes clear.

He’s been playing the game by the enemy’s rules for too long. That’s why he has me. It’s my job to show him that. It’s only when we’re both playing the right game that we can be on the same side.

The first question we want to ask is, “How can I help you?” It probably should be second.

The first is, “How is this your problem?”