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.

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2 Comments

  1. Thought provoking questions. As someone who has worked with intellectually disabled folks (interestingly this label changes often), folks in psychiatric facilities as well as children, families and otherwise “normally functioning” folks, I have many thoughts on this topic. I think you are getting to the crux of the debate, or what should be the crux, when you ask WHEN should and WHY should we alter people’s brains. I recall reading that symptoms rise to the level of “illness” when they “cause impairments and suffering” recognized by the patient. So subjective, especially when working with teenagers with mental illness and cognitive challenges. This population was by far the hardest for me. Not only did these quasi-adults have to take medications because they were not yet 18 but because their behaviors were seen as unruly in the schools. Average teens have trouble with coping skills, drug experimentation and sorting out if their medications are actually really helping them at all. Now take a teen with mental illness or cognitive challenges and the question of whether they should be medicated or not gets even trickier. Just a tid-bit to add to this conversation. Great article.

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    1. I do not buy the idea that suffering defines illness (which I take as synonymous with “disease,” mainly because I think there are things that cause suffering that (at least right now) don’t fit into “disease logic” very well, but which can be treated. I think we do have to have some set of traits that lead us to apply the reasoning of “diseases” to clinical entities, but we also need to have some leeway to define some things that aren’t “disease” as a cause for clinical attention. When there are lots of things going on, some of which do fit the disease categories and some that don’t, it gets even harder. In my practice, at least, that’s the norm more than the exception.

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