The Chemistry Experiment: Muppets Version

When your doctor, pen poised over prescription pad, tells you to weigh your costs and benefits, you will have next to no information with which to do so.  Over the last several and coming weeks, we are constructing an algorithm to help you comply with your doctor's instruction to make this calculation.  But remember, the best this algorithm can do is give you the odds.

After you calculate your odds, you may decide to proceed with this chemistry experiment and put the chemicals at issue inside your body, your own personal test tube.   At that point, you no longer have odds.  You have results.  Your doctor may not expect this, but once you have results, you will weigh your costs and benefits again.  You will make a new decision, this time with new information.

This is a good thing.  This is what people who conduct experiments do.  They use the information they have gained from one experiment to move on to the next.

This week's post is brought to you from the laboratory of Dr. Bunsen Honeydew, with the aid of his assistant Beaker. My thanks to Beaker in particular, for his contribution to science.



photo by Linda Bartlett, in public domain

OMGThat'sWhatTheySaid -- Noncompliance

Before I move to the costs side of Weighing the Costs and Benefits, I pause to consider the concept of noncompliance.

Noncompliance is not one of the best candidates for the OMG! Award, because I cannot point to specific usage -- it is ubiquitous.  On the other hand, it is precisely what this award is about, going to the heart of how language frames thought.  In this case, the word simultaneously names and creates a relationship between consumer and provider.

I don't particularly care for the terms consumer and provider when it comes to health care.  But I use them here, where they distinguish those who consume, literally put pills inside our mouths, from those who fill out those little slips of paper that provide the pills.  Providers replaces pushers, a term I used in a fit of pique last week.  This week, I have resolved to be more polite.

Consumers are told to weigh our costs and benefits.  When we comply with these instructions and, having done so, decide that the costs exceed the benefits, and therefore decide not to consume, then providers call us noncompliant.  What exactly is communicated here?

What is noncompliance, anyway?

I went to the dictionaries.


According to Webster's New World College Dictionary, noncompliant means failure to comply; refusal to yield, agree, etc.

MedicalNet.com puts it this way: Noncompliance: The failure or refusal to comply: the failure or refusal to conform and adapt one's actions to a rule or to necessity.

Don't you hate it when one word is defined by another word that still needs to be defined?  I went back to Webster's, and got these alternatives. 

COMPLIANCE
1: a -- the act or process of complying to a desire, demand, proposal or regimen, or to coercion; b -- conformity in fulfilling official requirements;
2 : a disposition to yield to others;
3 : the ability of an object to yield elastically when a force is applied.

So.  One has a desire, demand, proposal, regimen or official requirements, and may have access to force or coercion.  The other fails, refuses, or does not yield.  I wonder which is which? 

Scientists Study Noncompliance

Providers are disconcerted when consumers fail to consume, and spend a lot of time trying to figure out why.  By the way, this link goes to a review of literature by Alex J. Mitchell, a consultant and senior lecturer in liaison psychiatry at the Leicester Royal Infirmary in the United Kingdom, who receives no compensation from pharmaceutical companies.  I often link to reviews of literature.  Their authors read a jillion studies, including ones to which I do not have access.  Then they summarize the highlights of whatever consensus may have come from these studies.  Reviews of literature put a lot of information in one place.  Mitchell has 59 footnotes (okay, not a jillion -- I exaggerated), in case you want to look up the research behind a particular point.

So scientists speculate, do research, write articles, hold conferences and  train residents, all in efforts to increase compliance.  Their hypotheses about the causes of this behavior include inaccurate beliefs about medication, lack of insight into ones illness, lack of education in general, cognitive impairment, weight gain, sexual dysfunction, and poor patient/doctor relationship.

Mitchell even developed a flow chart to categorize the behaviors of patients: full, partial and excess adherence, intentional and unintentional non-adherence, for external or internal reasons, and various combinations of these.  Not telling your doctor that you have stopped taking your medication is called covert discontinuation, and in other places, covert noncompliance -- that word again, this time with the naughtiness of covert.

A friend noticed that Mitchell missed a category on his flow chart, the consumer who is compliant with other medications, but consistently, though inadvertently, forgets one particular medication that she thinks is the source of uncomfortable side effects.  That could be covert internal unintentional partial non-adherence.  Or would it be covert internal intentional partial non-adherence, covert here meaning that her intention is undisclosed to herself?  The flow chart matters, because having divided noncompliant consumers into subgroups, then they test different strategies to bring different subgroups back into compliance.

Some notice the non-PC nature of the word noncompliance.  While most articles I found use the term, occasionally, as in Mitchell, I come across non-adherenceNon-adherence is supposed to imply a mutual agreement between two parties about what the treatment regimen will be.  Other articles use the terms interchangeably, recognizing a fig leaf for a fig leaf.  After all, presumably the consumer and the provider have agreed together about the regimen to which the consumer will adhere.  Only notice, if the consumer does not adhere, then he/she has violated an agreement, or broken a promise.  Still naughty.

Matthew Keene, who serves as an adviser or consultant to GlaxoSmithKline, Cephalon and Pfizer, might have merited the OMG Award on his own, for Confusion and Complaints: The True Cost of Noncompliance in Antidepressant Therapy.  But why pick on just him, because, like I said, this language and weltangshauung (as they say in philosophy -- it means world view) permeates the literature?

Why Don't Consumers Consume Their Antidepressants? -- What the Providers Say

Mitchell cites a study indicating that 10% of those prescribed antidepressants never show up at the pharmacy at all.  Keene's figures are that 28% quit within the first month, 50% within 60 days, and only 28% are still in compliance at six months.  Keene asks, Why do patients prematurely discontinue antidepressants, medications that may improve and perhaps even save their lives?  His answer -- one of the 3 C's of noncompliance: confusion, costs, and complaints. 

Confusion, costs and complaints.  Notice that each of these is patient-centered.  He didn't say incoherent, financially foolish and picky.  But they are implied in the rest of the article.  Notice also that he did not describe the phenomenon from the patients' perspective.  He could have said inadequate communication, ineffective or intolerable medications and inaccessible health care and still preserved his clever alliteration.

Why Don't Consumers Consume Their Antidepressants? -- What the Consumers Say

What if patients wrote these articles, or were even consulted?  Actually, they have been consulted.

44% consumers who discontinue medication before their providers would like (the research calls it prematurely) say they did so because it made them sick, most commonly nausea, headache, drowsiness, and increased anxiety.  Well, duh.

I don't know.  Has it occurred to anybody besides me that we could solve this puzzle and put all that research time and money to better use if we gave the scientists a turn as the lab rats?

Another 44% consumers report that they discontinue because the medication is not effective.

That leaves 16% unexplained.  I will get back to them when I discuss costs more thoroughly.

I sorted through lots of these studies before it finally occurred to me to compare rates and reasons.  Noncompliance at six months is 72%.  Back to NIMH's STAR*D study, when trial subjects received compensation, free medical care, extensive information and regular support, antidepressants were ineffective for 50% of those who took them and intolerable for 16%, a total of 66%. -- That was the first trial.  By the third trial, medications were ineffective for 83% and intolerable for 26%, more even than the total.

What I want to know is just how many people take antidepressants when they make them sick and/or don't work anyway?  I personally know three.  Consistent with research findings, that better educated consumers are more compliant, these three have among them a BA, a Masters and a PhD.

Is there something going on here that is not about good medicine?

Rethinking Consumer Noncompliance

Psychiatrist Allan Showalter, Rethinking Patient Noncompliance, challenges the premises behind repeated and repeated research on noncompliance, a behavior which found across other diagnoses, not to mention life issues ranging from flossing to portfolio diversification, as well.  Here is the video of an Iowa Hawkeye football player on a motorcycle, one week before the game with our biggest rival.  A football player.  No helmet.  Despite repeated pleas of Kirk Ferentz, the Hawkeye coach.

I do recommend that you follow Showater's link for the novelty of his thinking.  One example: Nothing in [the definition of noncompliance] implies a moral obligation on the part of the patient to follow those recommendations or to the clinician who makes those recommendations to enforce them.

Countertransference

Yuval Melamed and Henri Szor, The Therapist and the Patient: Coping With Noncompliance, focus on the relationship between the patient and therapist as the source of noncompliance, rather than taking patients at their word.  On the other hand, they use a word that I did not find in any other article.

Countertransference.  Okay, ignoring the definition that includes the word transference, [again -- so irritating when dictionaries do that], Webster's defines countertransference as the complex feelings of the psychotherapist toward the patient.

Melamed and Szor think that noncompliance arouses reactions in therapists who feel that this behavior exemplifies a lack of trust in them and in the corpus of knowledge they represent.  I think that takes us part way there.

It is the therapist's job to manage the dynamics of countertransference in what is an unequal power relationship. That management would include not allowing the therapist's feelings toward the patient to misinterpret the patient's experience as hostility and thus misdirect the intervention.

I have not found evidence that providers of medication ever explore the impact of their own feelings on their treatment of consumers, at least in the arena of noncompliance.  Countertransference is a regular part of psychotherapists' training.  If it is ever mentioned in medical school, none of the literature gives evidence that the lesson sticks.

Weighing the Costs and Benefits -- Progress Report

Sorry about all the numbers in this post.  I have not found in the research any effort to measure the costs side of you have to weigh the costs and benefits that is not filtered through the concept of noncompliance.  So the algorithm will suffer from research that is compromised by its initial assumptions.  Thta is why we had to start with the OMG Award.

Next week, the Muppets will give us a break, while my brain does a bunch of number crunching.

drawing of dictionary in public domain
Adam and Eve by Albrecht Durer, in public domain
photo of Warren G. Harding in public domain
photo of woman pointing taken by David Shankbone,
used by permission under the Creative Commons 
remainder flair from facebook

Weighing Costs and Benefits Part II: Benefits

Today the Free Range Lab Rat, yours truly, continues my extended series on the Chemistry Experiment, that effort to find the chemicals that will make a dent in the suffering of those with mood disorders.

I asked, Will it work for me?

And the doctor answered, We won't know until you try it. 

THAT is the Chemistry Experiment. 

So three weeks ago I published my

Manifesto

If I am a lab rat, I will be a free-range lab rat.

Because I am a free-range rat, I decide which experiments I am willing to try.

Of course I do.  The doctor expects me to decide.  Why else did she say,

You have to weigh the costs and benefits. 

Only -- there is no scale.  Which led me, two weeks ago to continue my manifesto.



I now insist that I contribute more to this enterprise than my body.

So I have decided to create the scale.  I call it an AlgorithmAlgorithm is science-speak for a set of logical rules applied to objective data to solve a problem.  The problem to be solved is 

Do I Want To Put These Chemicals Inside My Body?

It turns out there are lots and lots of these costs and benefits to weigh.  The numbers you get in your fifteen minute med check are abbreviated and oversimplified to the point of useless.  So this is going to take a few weeks.  I am breaking it down, one step at a time.  Like I said, a set of logical rules applied to objective data to solve a problem.  I promise as few numbers and as many pictures as possible.  Plus another musical interlude.

Two weeks ago, I made a list of factors, all the things that go into the scale.  Today we look at the good side, what the doctor calls BENEFITS.

Here goes. 

Effectiveness Rate

Tribute to Survival

This is dedicated to those who are surviving the Chemistry Experiment, and to those who hang in there with us.

Bring your courage and your hope, whatever you can manage.

And your helmet.



Thanks to Danny MacAskill and Band of Horses.

Weighing the Costs and Benefits Part I -- What Counts?

Manifesto

If I am a lab rat, I will be a free-range lab rat.

There.  I feel better already.

To recap from last week:

You Have to Weigh The Costs and Benefits

That is what the doctor says.

Last week I promised I would develop a way to do that.  So this week we play math games.  For the next few weeks, actually.

Now, don't freak out.  I am not going to ask you to do math.  I am going to make up some rules.  You are along for the ride.  Though do feel free to suggest better rules.  Plus, I promise lots of pictures.  And a musical interlude.

I am a rat.  I live in a laboratory, where I participate in the Chemistry Experiment.  Along with other scientists, I am trying to find the chemicals that will make a dent in my mood disorder.  Not theirs.  Mine.  Which is how I got the rat end of this job.  But because I am a free-range rat, I get to decide which experiments I am willing to try.

I now insist that I contribute more to this enterprise than my body.

Manifesto of a Lab Rat -- Weighing the Costs and Benefits Part I

I Am A Lab Rat.  Yes, I am.

Here is the deal.  I was lucky enough, and you were lucky enough to be born after the discovery of penicillin (1928).  Well, I don't know when you were born.  But evidently penicillin was discovered before it became a life or death issue for either of us, or I wouldn't be writing and/or you wouldn't be reading Prozac Monologues.  This is good.

In another age, my ruptured appendix might have been treated with leeches.  That would not have been good.

As far as my more immediate health challenge goes, we are barely out of the leech stage.  Okay, that's a bummer, the timing of my life, that is.  But like I said, ruptured appendix, penicillin.  It could have been worse.

Research Into Mental Illness -- Rats

In the treatment of mental illness, they have figured out that leeches don't work.  They think chemicals might. They just haven't figured out which ones.  They are working on it.  They have lab rats, rattus norvegicus to be specific, who do the heavy lifting in this Chemistry Experiment.  Some people question the ethics of what gets done to these poor rattus norvegicuses who participate with not a single informed consent form in sight.  But that not only is another post, it is another blog.

Nonsense and the Anterior Cingulate Cortex -- Redux


This traffic monitor should read YOUR SPEED 60 MPH.  But I couldn't find that image.  I suppose creating it would not be a good idea.  So this image will have to do.

If you are traveling too fast when you hit the pothole, you break your suspension.

So I am taking a break while we try to balance the GAMA and glutamate in my synapses.  Here is a slightly modified rerun of an oldie but a goodie.  I think it addresses the current phenomena of the Tea Party, the growing rigidity of those whom it threatens, and the retreat of the rest into reality tv.  If I didn't make so many connections like that, my brain wouldn't hurt so much.  Then again, Prozac Monologues wouldn't exist.

Nonsense and the Anterior Cingulate Cortex -- November 7, 2009 

John McNamany put the thought into my head, the New York Times tickled my fancy and a blog new to me gave me the art work.

Function of the Anterior Cingulate Cortex

Finally, it's Anterior Cingulate Cortex Week!  This lovely portion of the brain is found in the limbic system, located just above the center, about where Iowa would be and extending into western Pennsylvania, if you flip the image so that it faces right, as I did here.  Like a true Midwesterner, the ACC modulates emotional response.  A hard-working manager, the ACC handles motivation to solve problems and anticipation of tasks and rewards.  It also monitors for conflict, things that don't make sense.  The brain is unhappy when it cannot detect a pattern.  Confronted with anomaly, the ACC goes to work.

The Absurd Stimulates Pattern Finding Behavior

"Researchers have long known that people cling to personal biases when confronted with death... In a series of new papers, Dr. Travis Proulx of University of California Santa Barbara and Steven J. Heine, a professor of psychology at the University of British Columbia, argue that these findings are variations on the same process: maintaining meaning, or coherence. The brain evolved to predict, and it does so by identifying patterns.

"When those patterns break down — as when a hiker stumbles across an easy chair sitting deep in the woods, as if dropped from the sky — the brain gropes for something, anything that makes sense. It may retreat to a familiar ritual, like checking equipment. But it may also turn its attention outward, the researchers argue, and notice, say, a pattern in animal tracks that was previously hidden. The urge to find a coherent pattern makes it more likely that the brain will find one." [Benedict Carey, New York Times, October 5, 2009]

To test whether confronting the absurd leads to pattern-searching behavior, they had twenty college students read Kafka, The Country Doctor, a story that is urgent, vivid and nonsensical.  Does anybody who is not in college ever read Kafka?  Anyway, after reading the story, they were given a task, to study strings of letters that did not form words.  They were then shown a longer list, and asked to find the strings they had seen before.  The letters did have patterns, very subtle patterns.  And the students who had read Kafka did better at this task than another twenty who had not been exposed to the absurd, 30% better.  With a Kafka-stimulated ACC, they were primed to find the patterns.

I wonder if that explains the college student's propensity to read Kafka in the first place.  Not to mention all those posters by Salvador Dali on dorm room walls.  The college student is at a crossroads, and has to puzzle through the animal tracks of his/her life, to discern the pattern, the call, the next direction.  These representations of the absurd stimulate the part of the brain needed at this developmental moment, just as caffeine stimulates the system before the exam.

I graduated from college at loose ends, with the Episcopal Church still discerning the patterns that would allow for the ordination of women.  That was a few years off, and I wasn't ready to commit to a vocation that might not be received.  But I didn't read Kafka.  Instead, I decided to read everything that Kurt Vonnegut had written up to that point, a modern day Kafka.  Kafka-lite, if you will.  Today, as I fill out disability applications, I am again at a crossroads, and again instinctively, am drawn to Vonnegut, whose body of work has grown since 1975.  Evidently I am stimulating my ACC and boosting my pattern/meaning/coherence finding abilities, priming myself to discern my next direction.

Patterns and the fMRI

Oh boy, I found another fMRI experiment!  There is a study in the Journal of Pain (what a title!) that discovered, when people were prompted by pain-related words to remember painful autobiographical episodes, the fMRI machines showed that it was -- you guessed it?! -- the anterior cingulate cortex that lit up.

Dialectical Thinking -- On Not Blowing Out Your ACC

This person loved me; this same person abused me -- two memories in conflict, absurd.  Put them together, they cause pain. They call it dialectical thinking when you hold two seemingly contradictory ideas in the same head at the same time.  But dialectical thinking is a highly developed skill.  Before anybody ever suggested to me that I could employ it to reduce my pain, I spent (and still do spend) enormous amounts of energy trying to make sense of events that were absurd.

Some of us had Kafka-esque childhoods.  I wonder, does the ACC become quiet if we engage in dialectical thinking?  I wonder, does it blow a fuse if we don't?

If you are searching for Christmas gift ideas for the Prozac Monologues blogger, an fMRI machine would certainly be well received. 

photo of traffic sign by Richard Drdul, Creative Commons  

image of brain from NIMH 

Obama inauguration photo taken by
 Petty Officer 1st Class Chad J. McNeeley, USN 
and in the public domain 

Popular Posts