Showing posts with label noncompliance. Show all posts
Showing posts with label noncompliance. Show all posts

Trading Symptom Relief for Side Effect Relief

Why do people stop taking their psych medication?


Psychiatrists spend a lot of time on this question. They used to call it noncompliance. Then they figured out that the word fed the power struggle between doctor and patient. Now they call it nonadherence. Me, I am not convinced that the word change reflects an attitude shift on doctors' parts, i.e., that they have changed their attitudes toward noncompliant patients, have abandoned the power struggle themselves, and instead want to partner with their patients. I suspect the word change is a cosmetic shift designed to change the patient's attitude.

Psychiatric Times regularly publishes articles on why patients don't take their meds and best practices for improving adherence. Suboptimal adherence is pervasive among individuals with chronic health conditions, including psychiatric disorders... However, many mental health practitioners ascribe nonadherence to the mental illness itself.

Anosognosia and Amador

Anosognosia. It means lack of insight. But from the mouth of Xavier Amador, it’s his ticket. He tells you he knows why your son or daughter won’t take meds. And you are desperate for the answer, aren’t you. Because schizophrenia is a terrible disease and your beloved child is sick and won’t take the meds. The meds would make everything alright. So you are desperate and Xavier Amador throws you a lifeline, a promise that once you understand this unpronounceable word, you can learn how to get your child to take the meds.

He must be right, right? Because he is a psychologist and he can pronounce it. And then the kicker, he also loved somebody with schizophrenia, and he says he got him to take the meds. So NAMI invites him to give the spotlight lecture, and for the rest of the convention, parents hear every other presentation through the filter of this new word that they cannot pronounce.

Here is how you pronounce it:



But really, why bother? It means lack of insight. But you have heard of lack of insight before. And you can pronounce lack of insight. So those words don’t have the power to claim you and get you to buy his book like anosognosia can.

Actually his advice is not bad, once you get past the power play. Stop fighting your sons and daughters, stop trying to convince them that they are sick. Instead, build a relationship.

Listen: reflectively with respect and without judgment
Empathize: strategically with emotions stemming from delusions and anosognosia
Agree: find areas of agreement - abandon the goal of agreeing the person is sick
Partner: on those things you can agree on -- not being ill




I like that advice and have given you a clip of the best part of the presentation.

Now if you will permit a word of advice about relationship-building from somebody who has a mental illness and occasionally does not recognize when her symptoms are showing - ask us why we don’t take our meds.

I met a new friend at last month's NAMI convention. I explained that I wasn't going to this presentation, I had heard it a number of years ago. Then I said, "Ask us why we don't take our meds." She said her son says they make him feel terrible. Bingo.

Now it's true, sometimes people with schizophrenia have delusions that make reality testing difficult. Sometimes people with bipolar in a psychotic or manic state do not recognize that state. I have on occasion rejected my spouse's concerns about my hypomania. And some of us do go off our meds in these temporary states.

But NAMI does a disservice to family members by giving them this fancy word that substitutes for believing what their loved ones tell them. These meds suck. They cause ballooning weight gain, leading to heart disease and metabolic disorders which shorten our poor pathetic lives by ten years on average. They evaporate our sex lives (not that parents want to hear about their children's sex lives.) They fog our brains and drain our energy, leaving us with lives that are not worth living.

Nobody talks about what Nancy Andreasen discovered after fourteen years worth of brain scans of people with schizophrenia -- the more antipsychotics you take, the more brain volume you lose. National Medal of Science recipient, one of the world's foremost experts on schizophrenia, yes, Dr. Andreasen remembered to control for things like severity of illness and alcohol/illicit substance use. Neither affected the results. It was level of dose and length of treatment. The more antipsychotics you take, the more brain volume you lose.

[Funny thing, soon after she published her preliminary results, her funding evaporated.]

A conversation about why we should take our meds anyway really has to include an acknowledgement of the fact that these meds suck. True acknowledgement, not some sort of mental crossing of fingers behind the back, with the all-knowing family members chanting Amador's magic power potion, anosognosia, under their breath.

Half the people who won't take their meds think they are not sick. Those are Amador's numbers and I won't dispute them. And if you don't already know that delusions are not the sort of thing that somebody can be talked out of, then I suppose he does a service to tell you that. But are you sure that's why your loved one doesn't take the meds? He's got a whole ballroom filled with people who now believe it, and who take any other protestation to the contrary as proof of anosognosia.

Okay, that's my first objection to NAMI's sponsorship of Xavier Amador's presentation at not one but two of the three NAMI conventions I have attended. Dammit. His half truths.

The second is that his presentation is a parlor trick. Really, two parlor tricks. The first is that unpronounceable word by which he's got you. He has established the power of his credentials over you. He is the expert.

The really disturbing parlor trick is his demonstration of what a delusion is. He gets a volunteer from the audience. Then they do a role play. The volunteer answers questions about his/her spouse. Then Amador does an "intervention." He tells the volunteer that s/he has been stalking said "spouse," who is not actually married to the volunteer after all. The marriage is a delusion. The volunteer has violated no-contact orders, and they are going to get the person help. There are people just outside the door who are going to take him/her to the hospital. This goes on for a while, demonstrating that Amador is indeed not able to convince the person that the so-called spouse is a delusion. Voila! Anosognosia.

Now one interesting thing about this demonstration is that we are to take it as a demonstration of the power of delusion. But in fact, the volunteer is not deluded. The volunteer genuinely is married to his/her spouse, and ends the demonstration still sure of the fact.

What Amador has actually demonstrated is called gaslighting. The volunteer does not fall under the spell, does not forget the spouse. But the audience does. The audience is convinced that this demonstration demonstrates something more than mental cruelty, that they have learned something about the power of delusion, which, again, never existed in the first place. And he knows that this parlor trick is harmful, because at its conclusion he gives the volunteer advice about how to recover from it.

But there are those who do not fall under the spell, those who have seen it before, in some other psychologist or psychiatrist's office during a professional visit. That's why one person left last month's demonstration sobbing, and why I spent an afternoon in concentrated self-care after my exposure to this presentation years ago.

Here is an example: I call my psychiatrist to get help for symptoms I am having from withdrawal from Effexor. She says I don't have withdrawal symptoms, because it is not possible to become addicted to Effexor in the short time that I took it. I persist, I am having the withdrawal symptoms described in the literature and need help. Now who do you believe? She, after all, has a PhD in psychopharmacology as well as her MD. And I am a self-confessed mental case who insists on stopping this medication that she thinks I should be taking.

I took my wife with me to my last appointment with that psychiatrist, so she could report what happened in the office to my therapist who had slapped a new diagnosis on me based on my own reports.

Amador is not that psychiatrist. He is the trigger for the reliving of that psychiatrist because he uses the same techniques:

1. Establish the extreme power differential, in one case her academic degrees over my addled mental state, in the other his five-syllable word over the uninformed audience who cannot wrap their tongues around it.

2. Take the moral high ground of compassion, trying to help, a position over the other.

3. Say whatever the hell you want.

4. Refer any protestation back to #1.

Yes, there is a kernel here. Stop fighting your loved one. Build the relationship. But the parlor tricks do real damage. Isn't it time to retire this presentation from its position as the major Friday night presentation at NAMI conventions?

[By the way,  to add some context: adherence runs at around 50% for people taking high blood pressure medication.]

still from tv show M*A*S*H* from IMGflip.com
graphic of Zombie by Jean-nöel Lafarge, used under the Free Art License
still from the movie Gaslight from vox.com


Stages of Recovery - AKA Hope

It gets better.  It really does.

People who get tired of the Chemistry Experiment go off their meds.  Why?  Because the meds don't work.  Or they make us sick.  And the doctor doesn't hear us, because the doctor has one tool in his/her toolbox.  [Hint: It's not an ear.]  And he/she thinks that the solution to our problem is compliance, because there isn't time for listening and problem solving.

When you walk into a hammer store, they will try to sell you a hammer.  Fair enough.  If you are trying to rebuild the life that your illness took from you, chances are you will need a hammer.  Chances are you will need some other tools, as well.

The doctor doesn't have those other tools.  But they are out there.  And so is the map.

You are angry that the meds promised what they could not deliver.  Get over it.  Pull out the map.  Or the toolbox.  Mixed metaphor.  Whatever.  Get over it.  Get to work on your recovery.

The Recovery Map

Recovery Redefined

 The Medical Model Failed

We got sick.  Well, we were already sick.  We sat in the doctor's office, while the doctor quizzed us about our behavior, sorting out where we belonged in the DSM's symptom silo.

Next the doctor enrolled us in The Chemistry Experiment, prescribed the chemicals that were supposed to reduce those behaviors.  Not fix our brains, mind you.  Nobody has been testing whether these chemicals fix our brains, just whether they change our behaviors.

Changing Attitudes - Building the Therapeutic Relationship


What if your chart had your picture on it?  What if, as your doctor picked up your file from the top of the pile, just before you walk in the room, there on the cover is a picture of you from when you were well?



Maybe several pictures, images of the life your illness or your meds took from you?  Images of the life you manage to live anyway?  What if your doctor could see, not only your diagnosis, but also -- you?

What if your doctor knew what you still can do?


Okay, the chart is digital where I go for care.  My photos could come up as a slide show!

I want my chart to include my degree from Reed College.  It would come up as soon as the doc hit escape from the slide show.  If your doctor still uses paper file folders, your degree or certificate or major award could be stapled to the inside left cover, right across from the case notes of last month's visit.


Maybe my degree from Yale would be more impressive.  It's a Master's, and it's in Latin.  But I want my doctor to know I went to school with Steve Jobs.  Just as he studied Shakespeare, because scientists study Shakespeare where I went to college, I studied science.  At Reed College even poets are required to learn how to evaluate a research design.  First you read the method.  If the method is flawed, the conclusion is still just somebody's fancy.  You needn't bother reading the rest.

So I know how to detect bullshit when the doctor is parroting back at me the bullshit he/she heard from the sales rep.  I want my doctor to remember that.  It will save us both a lot of time. 

You Want That Placebo Effect

Here is what is at stake in my photo fantasy:

One out of every nine people in the US took antidepressants in 2005-2008, one of every four women aged 40-59.  So how are they working for you?  80% of their success, if they are indeed successful, comes from the placebo effect, the healing power released in your body by your own belief that they will work.

Now you are more likely to believe if you have confidence in the doctor that prescribed them.  Given that you are taking antidepressants in hopes of alleviating some sort of suffering, and given that they cause their own sort of suffering, it is clearly in your interest to maximize the placebo effect, so that the benefits indeed outweigh the costs.

Recently I reported a study that discovered a particular wrinkle in this issue.  You get better results from the same med depending on who your doctor is.  In fact, some doctors get better results from placebos than other doctors get from the medication.  How about that!

It's all about the therapeutic alliance, the relationship between the doctor and the patient.  The relationship carries the weight of the healing. 

All I'm Asking is For A Little Respect

So my recent post, The Therapeutic Alliance - Or Not identifies one factor that I believe is critical to the therapeutic alliance, whether the doctor respects the patient.  We have greater trust in doctors who respect us, who think that we, our lives and our bodies are important, and who demonstrate that respect in specific ways.

I generally do not find that respect reflected in the writings of psychopharmacologists, doctors who treat psychological disease with pharmacology.  I hardly ever find it in anyone who writes about compliance, getting us to take our meds.  I do not find it in most writing about suicide.

Fortunately, my current psychiatrist does give me good examples of how to build trust by demonstrating respect.  So I don't have to invent this post all myself.

My doctor apologizes when common social convention calls for an apology.  My doctor listens to me and pays attention to how my illness and how my meds are affecting the life I want to live.  My doctor prescribes and changes her prescriptions based on the information I give her.  My doctor educates me about my condition, what different medications can do, and how well-founded the claims made for these medications actually are.  My doctor writes things down for me when I am having trouble remembering.  My doctor knows that I will make my own decision.  She asks, What do you want to do? 

Common Ground  Between Doctor And Patient

I suspect this next example is controversial.  My doctor establishes common ground.  We don't spend time talking about her personal life.  But she has photos of her children in her office and pictures they have drawn.

In the early history of analytical psychiatry, doctors were god-like figures who cured by force of their personalities.  Whether that ever was a good idea, the conditions under which this god-like distance was supposed to work no longer prevail, i.e., years of couch time to develop and explore the transferences and counter-transferences.

Nowadays, you could make, I have been making a case that The-Doctor-Knows-Best approach sets up the compliance power struggle that doctors are going to lose, they are going to lose, they might as well give it up, because they are going to lose.

But if my doctor and I have something in common, in this case motherhood, then the distance between us is reduced.  I can imagine that we share some values, an understanding.

Once my wife was in a restaurant that you could call acoustically alive, when she heard a toddler having a full metal jacket meltdown.  She turned, and every person in the room turned to look.  She recognized the toddler who was having the full metal jacket meltdown.  She had seen his photo in my doctor's office.  Sure enough, her eyes met my doctor's, who looked for all the world like the mother of a toddler who was having a full metal jacket meltdown in a restaurant that is particularly acoustically alive.

When I get a little crazy in the head, when my hippocampus takes me on one of those time travel trips and I confuse my current doctor with the one who doesn't do relationships, when I am scared and angry because the latest chemistry experiment is making me sick and I don't believe she will hear me, then the story about that toddler brings me back to reality.  When I see the picture of that child in her office, I remember she is not god-like.  We have some experiences in common.  We are on the same side.

The story even has the power to recall me to my own competence.  When my son used to have a full metal jacket meltdown in some public place (not often, but it happened), I discovered that if I turned him upside down and held him by his ankles, he would gain a different perspective on his world and whatever it was that had disturbed him so.  This different perspective seemed to make him thoughtful.  At least it made him quiet.

This is Car Salesmanship 101, by the way.  When you walk onto a successful car lot, within three minutes a salesperson will have established some sort of connection with you, a place where your lives or interests intersect.  Doctors are not salespersons, you say?  Then why are patients called consumers?

Caveat: Behaviors Are Not Enough

But behavior isn't enough.  Malcolm Gladwell's Blink: The Power of Thinking Without Thinking reveals how our adaptive unconscious helps us make judgments in an instant.  Sometimes this capacity is essential for survival.  Sometimes it makes mistakes.  Sometimes it can be brought into consciousness and trained.

Gladwell defines an instant as a unit of time measuring two seconds.  Those of us with extensive trauma histories, who are the most treatment-resistent, don't need two seconds.  We learned to jump, to duck, to cover on the briefest freeze of a smile or glaze in an eye, a nanosecond of body language.

That's called hypervigilance, and our care providers want to treat us out of it.  Hypervigilance does take a lot of energy, and can interfere with recovery.  But treatment can be dangerous, too.  And while it may be helpful to train our adaptive unconscious, it may not be in our best interest to lose this skill, even if it makes it easier for our caregivers to pull one over on us, such as, make us think that they respect us, nut cases that we are.

No, learning the behaviors of respect is a start, and the bottom line for competent care.  But the truth behind the behaviors lies naked before our hypervigilant eyes.  Better than learned respectful behavior is genuinely held respectful attitude.  Don't just behave as though you respect me.  Respect me!

Now really, patients have to cut our care givers some slack.  Remember, they see us at our worst.  They are not in the room when we are managing a meeting, delivering a speech, making a gingerbread house, organizing a party, taking care of the kids.  No, they see us sick, focused on our symptoms, angry about the last med and the doc who prescribed it, anxious about the next, ranting, delusional, scared...

These are not encounters that build respect.  We don't think much of ourselves when we display these behaviors.  Why would they?  Based on their extensive, though exceedingly narrow experience of people with mental illness, their adaptive unconscious is pretty hypervigilant around us, too.  Not always so unconscious.  Mental health workers experience five times the national average rate of violence on the job.  They write articles, develop protocols, and design buildings to protect themselves.  From us.

Hold on, Goodfellow -- save something for another post!

Changing Attitudes - Building Alliances

Experience forms attitudes; experience can change attitudes.

Another psychiatrist I know who demonstrates respect is on the board of the local NAMI chapter.  He partners with board members, including people who have mental illness, for common goals.  He spends normal time with people with mental illness.  Well, at least he occasionally has coffee with me.  We talked once about my symptoms in his office.  But we left the office and had coffee where normal people have coffee.  When I saw him once interacting with someone who was displaying delusions, I was struck by the respect he demonstrated.  I learned from him how to behave respectfully toward people who have delusions.

I began this post with an idea about putting in front of psychiatrists images of their patients that are positive, that reflect the larger reality of our lives, images of recovery and wholeness and worth.  It's all about how to help them learn to respect us.

Doctors and patients really do need to get on the same side.  The best doctors understand that to get there, they, too, need to move.  And first, from the inside.

photo of baptism by Malaura Jarvis
Team Prozac Monologues NAMI Walk photo by Judy
photo of gingerbread house by Margaret Doke
flair by facebook.com
book jacket by amazon.com
logo for Occupational Safety and Health Administration in public domain
college graduation photo by Jenny Krch

Does Your Psychiatrist Respect You?

My biggest surprise since becoming a mental health blogger -- how little self-reflection psychiatrists do.

Healer, Know Thyself

Clinical education for clergy usually happens in a hospital.  For every patient contact hour, we would spend another hour writing verbatims (one third what the patient and the chaplain said, one third what the chaplain was thinking, one third what the chaplain was feeling), and then another hour discussing what we were thinking and feeling in group or individual supervision.

Continuing education for clergy includes more large doses of self-reflection.  I don't know how many times I have created my genogram, a family tree that includes the dynamics of relationships: alliances, roles, conflicts, secrets, patterns... for my first family counseling course, for a seminar on family systems in congregations, for doctoral work in congregational development, while training congregational leaders to show them how to do their own.  I once even made a genogram of a congregation and key diocesan figures when I took a situation to a consultant.


In this example, Sarah is extremely focused on her son, while Abraham and Isaac are distant; the brothers are in conflict.  The pattern repeats in the next generation.

Clergy groups do critical incident reports in support groups.  Similar reflection.  What is my part in this mess?  How do my needs and fears interact with somebody else's needs and fears?  How do I get out of the blame game?  How can I tap into my sources of strength (faith, friends, scripture, sacraments, grace, knowledge...) to get myself unstuck?

The point is to figure out how my issues interact with anybody else's.  If I can sort out my own stuff, I can be a healthier presence in my relationships with others, less bound by unhealthy patterns, more able to find creative solutions.

The two most helpful discoveries I have made from these exercises: sometimes my troubles at work have come from my repeating a script from my childhood, a conflict or alliance with a person who is no longer in the room; sometimes my troubles at work have come from inadvertently stumbling into a power struggle, when my first-born status runs into somebody else's position of power.

When I discover what is going on in me, and hence what is going on in the relationship, I can change my own behavior to defy the script.  I can do something unexpected that helps me and maybe even the other person break out of his/her script.  It works best if this unexpected behavior is funny.

Psychopharmacologists Don't Do Self-Reflection

It used to be that people training to be psychiatrists did psychoanalysis.  Then the mind was replaced by the medical model of mental illness, and this requirement went by the board.  Now it's all about the meds.

But we don't take the meds.  We don't.  The numbers differ for a variety of meds.  In one study, three months out from the original prescription for antidepressants, 72% of us have quit.

Psychiatrists call this noncompliance.   They write myriads of articles to explain the numbers, saying about us, they miss their highs or they lack insight.  These articles make no reference to what patients say about why we quit our meds, the meds make us sick and the meds don't work.  [That last link is to a rare exception.]


Systems theory would call these articles evidence of a power struggle.  Psychotherapy might recognize counter-transference, the feelings, in this case very negative feelings psychiatrists have toward patients who do not do what we are told or, even if we do comply, refuse to get better anyway.

Caveat

My therapist was surprised when I commented on how little self-reflection psychiatrists do.  Her field, psychotherapy is all over the counter-transference-type issues.  And there still are a few psychiatrists who follow the old model.  At the Gabbard Center, two of the three who interviewed me even had couches, not living room-type, but New Yorker-cartoon-psychiatrist-type couches.  I had never seen one before!

So I have to qualify my comment.  My reading has primarily been in the field of psychopharmacology, as in, the psychiatrist who told me, I don't do relationships.  I treat psychological illness with pharmacology.

It occurs to me that patients might be better off if this kind of psychiatrist skipped medical school and went to pharmacy school instead, with a specialty in psychopharmacology.  There they might learn about adverse effects and the consequences of adding one med on top of the other, to make it work better or to counteract its adverse effects, resulting in iatrogenic disease, the disease that is caused by the treatment itself.

You know, that overweight zombie you became, stuck on the sofa, unable to complete a sentence, until you die 10-25 years before your time on account of complications from liver disease, diabetes, and cardiovascular disease, on account of you actually took the meds that were prescribed..  Death by medical treatment.


The Power Struggle

The thing is, in this particular power struggle over medication, while psychiatrists think they have more education, more knowledge, more insight, more prestige, more standing, while they think they are the parent in this relationship and the patient is the child (yes, they do think this, they really do, they betray it in every printed word), all these things that make psychiatrists think they know best and should have more say matters not when it comes to whether that pill will go into the patient's mouth and down the patient's throat.  Short of physical restraints and a hypodermic needle (which every parent of a toddler in a grocery store has had occasion to covet), the patient is going to win this power struggle.

So why not recognize the power struggle for what it is, and give it up?  As long as you are bound to lose it, why not do something else instead?

I Trust My Psychiatrist

If, after all that, you still remember how I got onto this topic last week, and where I said I was going, then your cognitive functioning is not as bad as you thought.

I said when I feel respected by my psychiatrist, I am more willing to trust her with my body.  I promised I would name some behaviors that she exhibits that build the therapeutic alliance, notwithstanding the lack of respect that I find in vast numbers of articles by psychiatrists who write about why patients don't take our meds.

Collaboration

She asks me, What do you want to do?

When we have a med check, we exchange information.  She listens to my report about what I am doing with my meds, how they are helping and hurting my life, and what kind of life I hope to live.  Then I listen while she gives me information about how the things work, why I might be having certain problems, what might be possible.  I tell her my concerns, she tells me hers.

I know that she won't prescribe things that she thinks will be harmful, because she remembers how sensitive my body seems to be to these things, and prescribes accordingly.  She knows that I won't take things that I think will be harmful, because, well, nobody does, not for long.  She expects that I will do my own research and make my own decision, because she remembers that I know my stuff.

When I am not in good shape, she does not confuse a current cognitive deficit with lack of intelligence.  So she makes lists, writes down the major points.  I am still in charge.  She asks, What do you want to do?  I sometimes say, I don't know.  What do you recommend?  But she always asks, What do you want to do?

As it happens, I don't take antidepressants, antipsychotics or mood stabilizers anymore, because I never found one that worked and was tolerable.  But we worked together to reach that decision and to develop an alternative plan.

With my previous psychiatrists, I just stopped.  I made the follow-up appointment, then called the machine after hours to cancel, and stopped.  In a sense, that was childish, not to confront the doctor directly.  But honestly, when I did confront the doctor directly, I got treated like a child.

My current psychiatrist continues to participate in my decisions, and I continue to rely on her for help managing symptoms with rescue meds, because we are partners.

What About Lack Of Insight, Denial, and Stupidity?

So, I am on top of this.  I am motivated and informed.  I have lots of resources that support my recovery and carry me when I flag.  I have good insurance and get more than ten minutes for a med check.  I am not the typical patient in the typical setting.  I can imagine a psychiatrist reading this and saying, Collaboration just won't work in my setting.

So, does what you are doing work?

Follow up question: does blaming your patient work?

What About Frustration, Worry, Disappointment?

What if psychopharmacologists spent more time acknowledging that their work conditions are lousy, they are anxious for their patients, and they know they can't deliver on the promises of these miracle meds?  What if they wrote articles that addressed these issues, and how their frustration, worry and disappointment get taken out on their patients?

Maybe they could discover their patients share these frustrations, worries, and disappointments. with them.  Maybe they could figure out something new to do.

Respect

Examining ones own stuff takes work, and is not pretty.  Coming up with new behaviors that display respect and build a therapeutic alliance, experimenting, trying to change habits -- all of it is hard work.  And it might not make a difference anyway, if it's just behavior.  Even if it's respectful behavior.  If we can tell that the psychiatrist is faking it, is parroting a line.

Coming soon -- I will up the ante and write about:

Attitudes!

genogram of my own creation, please give attribution
flair from facebook.com
photo of mirror by Jurii and used under the Creative Commons Attribution 3.0 Unported license
clip art of tug of war by Microsoft Office
illustration of A Zombie, at twilight, in a field of cane sugar of Haïti by Jean-Noël Lafargue used under the Free Art License
sketch of hands shaking by Danieldnm and in the public domain

Dopamine and Dementors



Dementors are among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness out of the air around them... Get too near a Dementor and every good feeling, every happy memory will be sucked out of you. If it can, the Dementor will feed on you long enough to reduce you to something like itself...soulless and evil. You will be left with nothing but the worst experiences of your life.
-- Remus Lupin to Harry Potter
Harry Potter and the Prisoner of Azkaban

Been there?

While we wait with bated breath for the final episode of the Harry Potter movie series, here is a post on the neuroscience of Harry's worst nightmare.

Dementors, you see, are dopamine depleters.  They are not to be messed with.

Neither is any other kind of dopamine depletion.  Here is one clinical case, an experiment conducted on one highly-functional, never-a-whiff-of-mental-disturbance 21-year-old who received a dopamine depleting drug over the course of 25 hours.

Weighing Costs and Benefits Part IV: Costs

Some people quit taking meds that their doctors believe will relieve their symptoms of mental illness.  Why?

Because the meds don't work, because they can't afford them, because the meds make them sick.

Manifesto:

For any of these reasons, people who quit are making intelligent decisions in their own best interests.

On The Other Hand 

Sometimes the meds do work.  Sometimes people have decent health insurance with good drug coverage.  Sometimes the side effects are not as bad as the disease.  In that case, those who quit their meds are stupid.

Let's just get that right out front.

Moving On To The Costs

Today my series on weighing costs and benefits turns to the costs.  The costs do not tell you whether you should try a medication.  They simply give you the odds.  It is up to you to decide how you want to play the odds.  I calculate the odds based on the numbers of those who quit.  Those who consume have the best information about costs, what actually happens when they put these chemicals in their own particular test tubes.

How Many Of Us Are Noncompliant?

Out of 100 prescriptions that providers write, 10 consumers never consume.  They don't show up at the pharmacy at all.

28 consumers quit within the first month.  That includes those first 10.

50 quit within 60 days.

72 are outta there at six months, 78 within the year.

That leaves 22 compliant consumers.

How Do Noncompliant Consumers Explain Their Decision?

10 out of the 78 don't.  Providers failed to close the sale.  Providers would be interested to know why these 10 are pharmacy no shows, because it might help them improve their pitch.  Their assumptions are that it was because the consumers didn't understand, or the providers didn't establish trust, or that good old back up -- stigma.  But often, consumers don't report their decision.

We could invent reasons, which might be fun, top ten list, that sort of thing.  The drinking buddy said, Buck it up.  Real men don't get depressed.  The transmission fell out of the car on the way to the drug store.  My favorite -- the primary care physician said, Are you kidding?  With your blood glucose and lipid levels?  Does this so-called doctor even own a blood pressure cuff?  However, all this speculation is just that.  These 10 do not give us information about the costs of taking the medication, because they never take it.

So now we have 68 consumers who quit after they tried the meds.  AK Ashton et. al. actually asked them why.

30 (out of the 90 who actually filled the prescription) say they quit because they could not tolerate the side effects.

30 say the medication was not effective.

That already adds up to 70 nonconsumers, counting the nonstarters and leaving eight who quit for other reasons.  I will suggest some of these other reasons, and you will have to come up with the odds yourself that any of them might put you among these 8.  (They may have reasons similar to the 10 who never started.)

And by the way, these numbers vary by how many different medications the consumer has already consumed, which primarily affects the efficacy number.  They also vary by which medication is currently being considered, primarily effecting the side effect number.

We don't have all the numbers we need.  Somebody needs to be collecting this data.  A consumer group, looking at real world data over the course of a year, not the guys with 6-8 weeks of information, seeking FDA permission and doctors' cooperation to sell pills.  But the algorithm itself will work for whatever the numbers turn out to be. 

Let's Start With Side Effects

30 of the 68 who consumed and quit say they quit because of side effects.  The clinical trials, lasting eight weeks or so, report much lower numbers.  The numbers the providers give you are from the clinical trials.

The common belief among providers is that they could improve compliance by giving consumers more information up front about side effects.  Small isolated studies sometimes confirm this over the short haul.  But this belief does not stand up to more research and more time.

Up front discussion of side effects can give the consumer strategies for dealing with insomnia, reducing nausea, preventing falls when they get out of bed.  These are the side effects we notice immediately.  Maybe they are tolerable if you have social supports to get you through the roughest first weeks.  Sometimes your body does  acclimate, and the immediate side effects become less bothersome.

But sometimes these strategies don't work.  Social supports wear out.  Mom has to go home and stop helping you with the kids.  You run out of sick leave.  The body does not adjust.  And sometimes these side effects are indications that you are taking the wrong medication!

But the major side effects appear later.  Which are the most bothersome?  The results: weight gain (31%), erectile dysfunction (25%), failure to reach orgasm (24%) and fatigue (21%).

Weight gain -- a few pounds in the first few months are not a problem.  You hardly notice.  But over the months, when you are moving from overweight to obese, you get a reality check on what this medication really costs.  Morbid obesity takes 8-10 years off your life.

Tell that to your psychiatrist when you complain and he/she says you have to weigh your costs and benefits.  Your doctor may not even know about how serious the health risks of obesity are.  Obesity even increases the risk of dementia.  But psychiatrists treat psychological problems with pharmacology.  They do not treat your heart, pancreas or liver.

Then there are the sexual side effects.  When you started the medication, you weren't getting much anyway.  That was one of the symptoms -- loss of interest in formerly pleasurable activities.  But six months later when you're not getting any, you (and your partner) recalculate your costs and benefits.

Hence, these noncompliance numbers go up over time.

Side Effects In The Algorithm

The major competition between makers of psychotropic medications has always been on this side effect issue.  It turns out, we just won't keep taking stuff that makes us feel worse.  So sometimes you can find studies that pit one against the other and get real numbers about side effects.

STAR*D found that in just 8 weeks, a combo of lithium/sertraline (Zoloft) got an intolerable rate of 45%, 2-5 times any other treatment.  Effectiveness rate -- 9%.  I wonder how many of the 91% who didn't get better would have been better off if they had taken nothing at all.

Or to put a finer point on it, did lithium/sertraline make matters worse?  They didn't test against placebo, so we don't know.

If the odds of harm are five times the odds of help, I will give it a pass.  That is like rolling the dice, looking for one particular number.  Only it's not dice; it is my body.  That is my personal decision, made after my eighth trial.  It is up to you how you play the odds.

For the sake of the algorithm, SE means the odds that you will quit taking this medication within a year because of side effects.

Efficacy -- What If It Just Doesn't Work?

We already discussed effectiveness in detail on September 2, Weighing Costs and Benefits Part II: Benefits.  Go back there for the details.  It makes more sense if you know the back story.  In summary:

Efficacy for Number of Present Trial (E#PT) means how many people got better with this med after they tried a number of others that didn't work.  Non-Spontaneous Recovery Rate (NSR) means how many people would not have gotten better if they had simply waited for the depression to go away on its own.  Efficacy for Number of Present Trial times Non-Spontaneous Recovery Rate equals Short Term Benefit (STB).  Those are the odds that it will work.

Or, E#PT X NSR = STB.

The abbreviations are there to make me look smart.  Which, as a matter of fact, I am.  Some days, I can make the smart parts of my brain connect  again and actually work smart.

Another way of looking at it: STB is a number between 1 and 100.  That many times out of a 100 are the odds that you have come up a winner.

So then the odds that the medication will not work are 100 minus Short Term Benefit.  We will call that Not Effective (NE)100 - STB = NE.  You have wasted your time, and are more discouraged than ever.  Bummer.

Now you may have noticed, the algorithm calculates the Short Term Benefit for eight to twelve weeks.  And the Short Term Cost refers to one year.  Why the difference?  Because you will likely be one of the early quitters (50%) if you don't get relief by twelve weeks.  And if you do get relief by then, you are likely to keep taking the medication for a year.  It may quit working for you eventually.  But you are probably good to go for a year.  Hence, twelve weeks for STB and twelve months for STC are probably equivalent measures.

Efficacy -- What About Those Who Quit Before They Gave The Medication An Adequate Trial?

I did not consider how many reported that they discontinued because the medication was ineffective, the 30 out of 90 that Ashton, et al, discovered in their survey.  This number is not helpful, because some of these 30 quit before the full 60 days needed to determine efficacy.

Instead, I used the efficacy numbers reported from the clinical trials.  As a result, those 8% discussed below is a larger group.  It would include the early quitters, because some of them might have gotten better if they had been more patient.

But these numbers are for illustration purposes only.  The algorithm is designed to be general, so that you can insert whatever the numbers turn out to be.

If you quit simply because the medication does not work faster than it works, and for no other reason, then you go into the stupid category.  Just to get that right out front.

Other Costs

8% (plus) quit taking the medication primarily for other reasons.  I expect that money, stigma and trust are the the big ones, with stupid in there, too, as stated above.

Money

Let's face it.  These medications cost money.  There are two costs to consider.  The first is the pills themselves.  The provider may provide you with samples, if yours is the newest wonder drug being promoted this week.  The samples likely last for two or three weeks.  This is good, if it helps you determine early on that there is no way you can tolerate the medication, even long enough for some of the side effects to become less troublesome.

On the other hand, it does not help you determine whether the medication will be effective.  That takes more time and your own money, a lot of it, if yours is the newest wonder drug being promoted this week, which you can count on, if you have failed to prove your provider a genius by getting better with his/her first or second choice.

If you have a good drug benefit, cost of medication may not be a major issue.  I now get my generics for free.  I represent a very, very small portion of the U.S. population.

I used to have insurance with a high deductible and mediocre drug benefits.  After the samples ran out, I paid $120 for a two month supply from a company that required I buy from them by mail order.  By the time the pills arrived, I had already discovered I couldn't tolerate the med.  I never even opened their bottle.  Meanwhile, I had to pay through the nose at my local pharmacy for the two weeks it took me to taper off.

In addition to the medications, you will pay for medical management, trips to the provider who will monitor your condition and tweak the chemistry experiment.

Again, these costs will vary by insurance plans and whether you have insurance at all.  With my current insurance, I pay $5/visit.  In my previous plan, I paid $40.  If I had no insurance at all, the cost would be $135.  And I see my doc every six weeks on average.

I cannot assign a number to the odds that you will quit a medication because of how much money it will cost you.  That is your call. Out of 100, what are the odds that you will quit because you cannot afford it?  We will call that $$$ in the algorithm.

Stigma

Okay, if you have made it this far through the Costs and Benefits series, you ought to be motivated enough to resist those who shame you (including yourself) for relying on a pill, for being weak, for being sick... whatever garbage they throw at you and you throw at yourself.  Please let's get over it.  I hope your stigma number is low.  But again, that is your call.  Out of 100, what are the odds you will quit for reasons of stigma? -- STG.

Trust

Next, out of 100, what are the odds that you will quit because you cannot find a provider you trust with your body, or because you think the pharmaceutical industry is corrupt? -- TR.

Stupid

Stupid is a side note.  Providers prescribe the medication because they already believe that the benefits outweigh the costs.  So they expect the stupid category is a large proportion of the noncompliers.   Only they call it confused.

Stupid is irrelevant to the algorithm, which is designed to weigh costs and benefits.  So stupid (or confused) is not in there.  Like stigma, stupid can be fixed.  But it is not a cost.  It is a prior condition.

Down And Dirty Costs

So now we simply add the odds of each of these costs together:

Side Effects plus Not Effective plus Money plus Stigma plus Trust (lack thereof) equals Short Term Costs.

SE + NE + $$$ + STG + TR = STC.

So How Do You Decide?

STC versus STB give you the odds.  Once more I repeat, they do not give you your decision.

We will look at a couple other issues and pull this all together in our next installment.  Whew.  My brain is about to explode.

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Photo "Solution" by Salvatore Vuono
Photo "Angry Father" by Akapl616.  Permission is granted to copy
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Weighing the Costs and Benefits Part III -- How to Measure Costs

The doctor said, You have to weigh your costs and benefits.  Today we continue to figure out how to do that, based on more than gut feeling and desperation.  We are building an algorithm, logical rules applied to objective data to solve a specific problem -- in this case, do you want to put these chemicals inside your body?

On August 19 I listed the factors to consideration, benefits, costs, and other issues that affect how these are calculated.  On September 2 I listed the immediate benefits of medication, and gave you a Down and Dirty way to calculate them.  I call it Down and Dirty, because it leaves out long term benefits.  Your psychiatrist will consider this a serious omission.  But we have to start somewhere.  And desperate people have to start with a time frame they can imagine surviving.  Think about the long term benefits once you feel better, and are thinking about quitting.

Today we turn to down and dirty costs.  This is more difficult to calculate, because the research on costs is filtered through the lens of noncompliance.

When you weigh your costs and benefits, if you should happen to decide the costs outweigh the benefits, it would seem logical to give the medication a pass.  On the other hand, if the doctor recommended the medication, it was because he/she has prejudged the matter and considers the benefits to outweigh the costs.

Yesterday the pharmacy attached a piece of paper to my refill.  Every single prescribing information sheet attached to any prescription I have ever received has said the exact same words.  They come in the section on side effects.  Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects.

Evidently the you in you have to weigh the cost and benefits refers to the doctor, not to you.  If your opinion differs from your doctor's, then you are noncompliant.

The Filter of Noncompliance Distorts Research

The information available about costs is filtered through this concept of noncompliance, the assumption that the doctor knows better than you.  So when they do research about costs, they are asking, Why do patients fail to comply with the doctor's more educated judgment?  The purpose of the research is to find strategies to get you to comply.

Our algorithm, on the other hand, asks a different question -- I believe a more neutral question.  How do the reasons to take the medication stack up against the reasons not to?  I do not presume an outcome, do not make any judgment, and certainly do not presume your decision.  While I am critical of the oversell, remember, I am currently conducting my own thirteenth trial!  But I have to get my information from people who have already made up their minds.

And they call themselves scientists.

Nancy Andreasen, a National Medal of Science Award winner and one of the world's leading experts on schizophrenia is studying creativity and mental illness.  Her first book on the subject is The Creating Brain: The Neuroscience of Genius.  Her initial hypothesis was that writers generally would not have mental illnesses, but that some family member would.

Andreasen's research proved her hypothesis wrong, at least the part about the writers themselves.  80% of writers have a mental illness, mood disorders being the most common.  This is called a robust finding, which means way more than might occur by coincidence.  And it goes some distance to explain the blogosphere, dontcha think?!  The way she puts it, when the data proves your hypothesis wrong, then you know you are on to something.  In other words, your presupposed ideas have not distorted the interpretation of your data.  This disproved hypothesis put her on a track that led to unexpected, new findings.

Nancy Andreasen is a real scientist.

If scientists started out asking Why don't patients take our good advice? and discovered, Because sometimes patients make better decisions, then they would be on to something.  They might even find a new track that would lead to new findings.

Why Use Noncompliance Rates Instead Of Research Results As A Measure of Costs?

Once you put the pill in your mouth, you are no longer playing the odds.  You are getting results.  Other people have preceded you in this chemistry experiment, first in small numbers in the clinical trials, and then in large numbers in the real world.

The clinical trials yield some information.  What happens in the first 6-8 weeks?  How many people experience fewer symptoms of depression?  How many people go into remission?  How many people get what sort of side effects?  How many people quit before the end of the trial, because the side effects are unbearable?  How do all of these results measure up against placebo?

The clinical trials also take place under circumstances that influence the results.  Three lead to a difference between their results and the results that people in the real world experience.

First, the trial subjects (the word for people who put the chemicals inside their bodies) may be cherry-picked.  This means they are people most inclined to get good results.  Researchers try to recruit subjects who have not tried more than one antidepressant already.  Remember, half of those who are experiencing depression for the first time recover and never get it again.  People who do not recover quickly take more medications, and get worse results with each one.

In the STAR*D study, one of the selection criteria was that the subjects had not already tried any of the meds to be tested.  Those for whom the medication had already been shown ineffective were eliminated.  Which kind of stacked the deck, dontcha think?  Other scientists do.

Second, subjects receive extensive support throughout the trial.  Monitoring itself inevitably influences the results.  When depressed people get to talk about their symptoms, it reduces their isolation and eases the pain that is part of depression.  Even if those administering the medication are trained to be neutral, subjects get better, just because somebody cares enough to ask.

Third, and most significant for our purposes, is that trial subjects receive encouragement, intense encouragement, to endure side effects and finish the trial. 

Your Results May Vary

First, in the real world, even if two antidepressants do not work, consumers are urged to keep trying.  And each subsequent trial reduces the odds that the next one will be effective.

Second, in the real world, consumers are not so carefully monitored.  They are handed a prescription and sent out the door.  Subsequent appointments get briefer and briefer.

Third, in the real world, consumers are less willing to consume chemicals that make them feel worse.  We have jobs, families, lives to live, as best we can.  Nausea, dizziness, blurred vision, anxiety, insomnia... these things make living our lives difficult.

Noncompliance rates over the course of a year measure results the real world.  My guess is that is where you live.

So, how many people have weighed the costs and benefits they experience inside their own test tubes, results, not odds, and run screaming from the door?  Or more likely, tiptoe out to exercise not overt, but covert noncompliance.

What Are Those Noncompliance Numbers Again? 

10% of those prescribed antidepressants never show up at the pharmacy at all.

28% quit within the first month.

50% quit within 60 days.

72% are outta there at six months, 78% within the year.

There are problems with these numbers for our purposes.  All the different reasons for discontinuation are lumped together.  As well, different meds have different rates of discontinuation.  For example, again with the STAR*D study, 16.3% quit Celexa in the first 60 day trial, while 45.5% quit a Lithium/Zoloft combo in the third trial.

Somebody needs to be collecting this data.  Some consumer group, looking at real world data, not the guys seeking permission to sell pills. 

And Why Don't Consumers Consume?

Regarding those first 10%, we just don't know.  We can have some fun guessing.  Top ten list, that sort of thing.  But these guesses do not add to our knowledge.  This is missing data, and we will have to work around it. 

Another 44% say they quit because the medication wasn't effective.

Here we run into a problem.  It takes a while for most of these meds to work.  We don't know how many who quit in the first four weeks could tolerate the medication, but did not give it an adequate trial.

Both providers and consumers have an interest in figuring out this number.  From the provider perspective, these early quitters might respond to a better sales job.  For our purposes, the early quitters fail to give us the information we seek to figure our own odds.

Our algorithm will have to assume that further research will provide the numbers.  Once somebody funds that consumer group.

44% consumers who discontinue medication before their providers would like (the research calls it prematurely) say they did so because it made them sick.  According to the clinical trials, the most common reasons are nausea, headache, drowsiness, and increased anxiety.  These side effects are more common in the 6-8 week time frame.  Eventually, consumers cite weight gain and sexual side effects as the most significant side effects.

These are the types of numbers we will crunch to create our algorithm.  Sketchy as they are, they will be used for illustration purposes, not actual calculations.

But I need another recess -- something fun next week.

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Cartoon from Microsoft images
Counseling photo in public domain
Andreasen photo used by permission
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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.

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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 
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