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

The Therapeutic Alliance - Or Not

My therapist asked, Does writing your blog help you overcome your trust issues with psychiatry?

Hah!  So she doesn't read my blog.

Not that I think she should.  Of all the many things about which I have strong opinions, whether care providers should google their patients is not one of them.  They can have that discussion among themselves.

Trust My Psychiatrist?

But her question started me thinking.  I trust my own psychiatrist.  How did that happen?  I tucked that question away for a future blog.

Then last September David Mintz wrote about Psychodynamic Psychopharmacology.  Psychodynamic psychopharmacology explicitly acknowledges and addresses the central role of meaning and interpersonal factors in pharmacological treatment.

One particular paragraph brought my therapist's question and my tucked away post back to mind:

The Prescriber and the Placebo Effect

An analysis of the data from a large, NIMH-funded, multicenter, placebo-controlled trial of the treatment of depression found a provocative treater x medication effect. While the most effective prescribers who provided active drug (antidepressant) had the best results, it was also true that the most effective one-third of prescribers had better outcomes with placebos than the least effective one-third of prescribers had with active drug. This suggests that how the doctor prescribes is actually more important than what the doctor prescribes!

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 Algorithm.  Algorithm 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

PTSD: The State of Treatment

This is the second part of a series on Post Traumatic Brain Syndrome.  Let me recap last week and expand on what we know about the neurobiological mechanisms (how the brain works) of PTSD, and then discuss treatment strategies.

When something stressful happens, the brain prepares the body for action.  The hypothalamus, pituitary gland, amygdala, locus ceruleus and opioid system all release hormones to speed up respiration, raise blood pressure, reduce sensitivity to pain, all useful conditions for the proverbial fight or flight.

Under normal stressors, as soon as these hormones are released, feedback systems go into operation.  The hypothalamus tells everybody else that their job is done and they can back off.

These hormones, especially cortisol, damage brain structures, notably the hippocampus, whose job is to regulate emotion and to perform the "that was then, this is now" function.  I named it that, and am very proud of it.  My own brain has almost no "that was then, this is now" function.  Pretty much zip.

OMG!!! That's What They Said! Significant

"Clinical studies of adults with depression showed that adding ABILIFY to an antidepressant helped to significantly improve depressive symptoms compared to adults treated with an antidepressant alone."

Okay, first let me say that this is not "Pick on Abilify Month."  I usually wander the web, (not quite so intentional as surfing), for interesting little tidbits to share with my readers.  But at my last appointment, my doctor gave me a list and told me to do my research and pick one.  So for the last month, I have had a focus.

Abilify has long since been eliminated as the winner of this assignment.  But it is such a good example of so many of my interests, including the use of language (as in this monthly OMG!! feature), marketing and clinical trials, that I can't let it go.  In fact, it gets another post later this month.  Not because I am picking on it, but because, well, stay tuned.

I found the winning quote for the month's OMG contest, "...helped to significantly improve depressive symptoms..." at Abilify.com.  It's the word "significant" that wins the award.  They really should share this award with many contestants, because that's what they all say, "significant."

The passage is found on the page intended for consumers.  So you would think they are speaking in the language that consumers speak.  This is not the case.  "Significant" in this sentence does not mean "significant" in the language that you and I speak.  The authors are referring to clinical trials, where the word "significant" is as significant as "toast," as in, "We are having toast for breakfast."  It is not significant enough to include as a facebook status update.  It is more like a twitter.  Though in FDA Land, it is the magic word, like "Open, Sesame", Sesame meaning big bucks.  So that is significant in the language that you and I do speak.  But I don't have a button for OMG Sesame!

At a University of Berkeley site, you can find the following definition:

Significance, Significance level, Statistical significance:  The significance level of an hypothesis test is the chance that the test erroneously rejects the null hypothesis when the null hypothesis is true.

 

And they wonder why we turn to Wikipedia? -- where it says:

In statistics, a result is called statistically significant if it is unlikely to have occurred by chance.

So here is the deal.  Abilify.com is talking about their clinical trials, where people who were not responding to an SSRI or SNRI, one of the current crop of antidepressants, tried adding Abilify or placebo.  There are many interesting features about how Wyeth conducted these trials, and you will hear about them later.  The point is that they had to demonstrate to the FDA that those who took Abilify along with their antidepressant got better results than those who took the placebo.  If they could demonstrate that, the "effectiveness test," then they are part way toward approval for on-label usage, and a vast expansion of their market share, because there are a lot of us around who don't get better on the current crop of antidepressants, and more of us every day.  They also have to pass the "safety test" -- an issue for another day.

So how much better?  A "significant" amount.  And as I said, that does not mean what most people think it means, as in "I feel significantly better since I added Abilify to my treatment strategy."  Did you think that it did, when they said that "adding ABILIFY to an antidepressant helped to significantly improve depressive symptoms"?  It does not mean that at all.

So what does it mean?  There are several tests that researchers use to measure levels of depression.  One is the Montgomery Asberg Depression Rating Scale (MADRS).  This is a ten item scale that lets an evaluator rank your symptoms on a scale of 0 to 6, 0 meaning no symptoms, 6 meaning whale shit on the bottom of the ocean, to quote crazymeds.  Items include feelings of sadness, appearance of sadness, appetite, sleep, suicidal thoughts, etc.  Theoretically, you could get a total of 60 points, but that would put you out of the reach of clinical trials.  They don't let people that sick into clinical trials. They want to pass their clinical trials. So they go for a crowd that is easier to impress.

There were three clinical trials done for Abilify.  The results were consistent from one to the other.  So I will use just one as an example, the third, published in April, 2009.  172 people took a placebo along with their antidepressant.  They had a range of MADRS scores, and the middle score (the "mean") was 27.1, which is moderately depressed.  177 took Abilify with their antidepressant.  They also had a range of MADRS scores, with the middle score of 26.6, also moderately depressed.  There are a variety of small differences between these two groups.  In each case, those receiving the placebo were a lttle bit sicker, but as far as I know, not "significantly" sicker.  After six weeks, both groups had lower MADRS scores, meaning that both had reduced their depressive symptoms.  That is good news for both groups, from the patient's perspective.

Since the placebo group improved as well as the Abilify group, you could infer that some of the improvement came from the experience of being in a clinical trial itself, or maybe just from the passage of time, because people with depression do get better.  But the $64,000 question for Wyeth is whether there was a "significant" difference between the two.  And the answer -- ding,ding,ding -- is yes.  The placebo group reduced its score by 6.4 points, and the Abilify group by 10.1.  So the difference between the two was 3.7.  In the language of statistics, the probability that this difference of 3.7 points was due to chance is .1% -- one in a thousand.  If you get that score for two clinical trials, that's good enough for the FDA.  And they got it for three.

So isn't that significant?  Yes, if you are a statistician.  If you are a patient, if you are weighing the risks and benefits, then maybe yes, maybe not so much.  In a test with a possible score of 60, the difference between the two groups was less than four, or two questions that were answered just a little differently.  3.7 points on the MADRS scale means going from "looks miserable all of the time" to "appears sad and unhappy most of the time," and from "slightly reduced appetite" to "normal appetite."  Do you consider those two differences to be significant?  Is that what you expected when you read Abilify.com, "adding ABILIFY to an antidepressant helped to significantly improve depressive symptoms"?

I have clinpsych.blogspot.com to thank for helping me find the original research report.  In the next stage of the Abilify story, I will explore why these results, significant or not, did NOT impress the people who actually took the medication. 

The Chemistry Experiment -- Placebo

Wouldn't you know.  I take a few days off before my placebo post, and wired.com scoops me with Placebos are Getting More Effective.  Drug Makers are Desperate to Know Why, by Steve Silberman 08.24.09.  Well, Steve put a lot more into his article than I intended for mine.  It makes for a fascinating read, about the history and current study of the placebo effect, beginning with its discovery during World War II, when an Army nurse lied to a soldier in pain.  They were out of morphine.  So she told him the injection of saline solution was a potent new pain killer.  And the patient's pain was relieved.  

That story is the essence of the placebo effect.  "When referring to medicines, placebo is a preparation which is pharmacologically inert but which may have a therapeutical effect based solely on the power of suggestion." -- thefreedictionary.com.  

In 1962, the Food, Drug and Cosmetic Act began to require that medications prove their safety and effectiveness against placebos.  One group takes the medication.  Another group takes a placebo, or "sugar pill."  Their rates of improvement and side effects are then compared, to find out whether the medication itself causes the healing, or something else does, like the belief  in the medication, which marshals the body's own healing powers.  

Fast forward to the last decade, when more and more antidepressants have "failed trials," meaning that they perform no better, or not much better than the little sugar pills.  It seems that the new neurological medications are performing just as well as the old ones.  (I think this usually means that within 8-12 weeks, about 30% of people who take them improve their scores on various questionnaires that measure levels of depression.)  But oddly, over time, the placebos are performing better.  Which means the bar that the new meds have to cross to get approved is getting higher.

The Chemistry Experiment -- Augmentation

When I began The Chemistry Experiment, there were about twenty options out there for me to try.  I was a wuss and quit at six.  I said "no" to a fifth SSRI/SNRI, and rejected the whole class of MAOIs (Monoamine Oxidase Inhibitors) -- which were just too tempting to use as a backup plan.  Instead I headed east, and Chinese herbs got me through almost two years.  Later I returned to an antidepressant that hadn't been effective before, but at least it did no harm.  This time it helped.  Was this because I was taking Xiao Yao San as well?  Who knows.  But now it doesn't work any more anyway.

Meanwhile, there is a new strategy called augmentation.  If one med doesn't work, try combining two, an antidepressant with an anti-psychotic, anti-convulsant, mood stabilizer, atypical anti-psychotic.  Suddenly the number of possibilities is up to forty.  That doesn't actually give you 1600 potential combinations, because if you combine MAOIs with most of the others, it'll kill you.  Most days, that doesn't seem like a good thing. Anyway, the number of potential trials has increased exponentially, and I am nowhere near the end of the chemistry experiment.

The Chemistry Experiment -- The Cure

I saw a movie in 1995, The Cure. It was about two boys, eleven year old Dexter and Eric, a little older. When Eric learns that Dexter has AIDS, he decides to find a cure. People find cures all the time in unexpected places. Since Dexter is not allowed to eat candy, Eric thinks that might be why he has AIDS. Keeping track of Dexter's temperature in a notebook, the boys try a lot of candy. After the first trial results were in, finding low efficacy and an unwanted side effect of stomach ache, they switch to plants down by the river, making a series of infusions (tea). This time a stomach ache leads to a hospitalization. When Dexter's mother ends the experiment and Eric's mother tries to end the relationship, the boys head south on a raft to New Orleans, where there will be new plants.

The Chemistry Experiment was something like The Cure, only my doctors didn't monitor as closely as Eric, nor respond as quickly to my side effects. Part way through it, I drew this picture of The Chemistry Experiment. The bottles crossed off were of Prozac, Celexa, Remeron, and Nortriptyline. Cymbalta is the one being added to the test tube, which was my body. I was willing to try no more than three per series, insisting that I wash out the test tube between. I also changed psychiatrists after three, and quit entirely for a while after Effexor.

I saved all my unfinished scrips. The pills fascinated me. They were the evidence of the violence to my body with which I was collaborating. My therapist really wanted me to throw them away. Eventually I did. But now I wish I still had them. Not to take all at once, that's not my plan. Just for evidence.