Tuesday, October 25, 2011

A Mental Health Patients' Bill of Rights

Smitty wrote:

“What does it take to be a great or even good psychiatrist? What are our criteria as patients? What are the criteria that psychiatrists value to be good, even great?"

Kathy added: “I would really value an exploration of Smitty’s questions ...”

You got it.

Smitty and Kathy were responding to my Sunday rerun post, Smart Meds Strategies - No This is Not an Oxymoron. The post was based on three reader polls that found eight in ten of you reported that your meds were not working “very well.” As I concluded:

The meds are the one constant in this equation. The two variables are you and your psychiatrist. First imagine a smart patient working with a smart psychiatrist. Now picture a naive patient placing his or her trust in a lazy and indifferent psychiatrist. Are we likely to see dramatically different outcomes? I rest my case.

I’ve made numerous comments on psychiatrists in past posts. Perhaps now is a good time to organize them into a sort of Patients’ Bill of Rights. Let’s get started:

The Right to a Psychiatrist Who Listens

Literally every complaint I get from readers boils down to the fact that their psychiatrists refuse to listen. The most common cases involve doctors who downplay their patients concerns about the side effects of their meds. I remember pointing this out to a group of clinicians in my first and last-ever grand rounds that I delivered in 2008. “Trust me,” I said. “When your patients complain to you about feeling like fat stupid zombie eunuchs on the meds you prescribe we are not doing this to ruin your day.”

My audience reacted as if I had just ruined their day.

A year later I was in the audience at a psychiatric conference as a prominent doctor told us how psychiatrists are trained to listen. I stifled my derisive outburst of shocked disbelief just in time. The comment was too much even for the psychiatrist sitting next to me. He whispered something to me, and we just shook our heads in amazement.   

There is no question that a clear disconnect exists between patient and psychiatrist. According to a 2003 study by Scott and Pope, clinicians felt their patients quit lithium owing to "missing highs." Patients who quit, on the other hand, cited other reasons.

More egregious - and still fairly common - are cases where a psychiatrist will insist on prescribing a med over the patient’s strenuous objections. Typically the patient will inform the doc that the med has caused an extremely bad reaction in the past. Typically, the doc will prescribe the med anyway.

Even a psychiatrist who wants to listen is disempowered, thanks to the demands of managed care. The standard ten-minute meds check militates against a concerned physician probing beneath the diagnostic label to find out what is really going on. We get lumped and categorized and prescribed to. But are we being treated?

The Right to a Psychiatrist Who Values Us as Human Beings

Three years ago, I heard a prominent psychiatrist tell a class of psychology undergrads that the worst stigma to be found anywhere comes from psychiatrists. Blow me down - a candid and honest psychiatrist. I have no reason to dispute him.

Too often, we hear from psychiatrists and other clinicians that we lack insight into our illness, that we refuse to take their advice, and that we go off our meds for no reason. Okay, there is some merit to these claims, but when you hear them mindlessly repeated with no regard to the actual facts, then the result is to devalue us as human beings.

Xavier Amador PhD, author of “I am Not Sick, I Don’t Need Help,” is the foremost proponent of the lack of insight hypothesis, which he insists is a brain disease in its own right (“anosognosia,” is the label he applies). I happened to run into him at a poster session of a psychiatry conference a few years back.

“Patients lie,” was his parting shot, as he walked away from me. He obviously didn’t realize I was a patient.

Dr Amador, I think you just proved my point.

The Right to a Psychiatrist Who Values Our Uniqueness as Human Beings

Back to my first and last-ever grand rounds. Regular readers here have heard this a million times, but it bears retelling:

"Keep in mind," I told my audience, "a lot of us view the world through the eyes of artists and poets and visionaries and mystics. Not to mention through the eyes of highly successful professionals and entrepreneurs. We don't want to be like you."

It was as if I had let rip a roof-rattler and everyone was too polite to laugh. Then I blurted out: "To me, you all have flat affect."

Kelvin grade frozen stony cold silence.

Really, why would I want to be like my psychiatrist?

The Right to a Psychiatrist Who Is Committed to Getting Us Well, Not Just Stable

Here is how I phrase the issue in an article on bipolar treatment on mcmanweb:

You are stable, no longer in a state of crisis. You are looking ahead - to the whole rest of your life - to returning to your normal life. Your doctor, on the other hand, is looking back - from the days or weeks that you emerged from crisis - at preventing another hospitalization. Already, there is a major disconnect between you and your doctor. ...

Your doctor tends to call it a success stabilizing you into a state of being clinically “undead.” But is that where you want to be? And if you bring this to your doctor’s attention - is that just you, another patient who lacks insight?

Wrapping It Up

Obviously, these four rights are interconnected and related. A psychiatrist who refuses to listen, for instance, is obviously someone who devalues us as human beings, fails to recognize our uniqueness, and is not committed to getting us well.

Unfortunately, there is little incentive for bad doctors to change their behavior. Legally, their asses are covered, professional discipline is non-existent, and they are removed from the pressures of the free market. Basically, even if their patients fail to get better - or even if they get a lot worse under their care - they still get paid.

Six months ago, I had lunch with two out-of-town visitors. The topic turned to psychiatrists. I twirled my pasta with my fork and looked up at the person facing me. If you had to take a guess, I asked, how many psychiatrists would you say are bad ones? From the look on his face, I could tell he was formulating the same answer as mine.

Two-thirds? I suggested.

He nodded his head. Two thirds, he replied. My other visitor was also nodding her head in agreement. Two-thirds sounded right to her, too.

Two-thirds. Does that sound right to you? Just asking ...

Further reading from mcmanweb:

The Problem Clinician
Problem Patients, Problem Meds
Opportunity Lost


Smitty said...

Thank you for another insightful article.

Those classic psychiatric viewpoints got me riled up all over again. I do this on a regular basis, myself--combi through my memories, trying to look for the good. And I still get mad.

I laughed in the places where your audience was clueless. Or were they startled by your honesty?
And afraid to laugh, lest you decide to go out on the comedy circuit?

PaintFreak said...

Good article John! A bill of rights is most certainly needed. Add to that : Patients have at least a right to be given a little education about their diagnosis. Too often many psychiatrists will give a vague diagnosis to you and absolutly no or little infomation about it. Wether this is just laziness, ie: do your own research, not on my time. (and I had too), or proffessional jelousy, with-holding and guarding knowledge as in "I am the proffessional, this is my domaine and I will tell you what you need to know. Both reasons are insulting and hinder progress, not to mention erode trust.

Lou said...

Paintfreak, you are so right! Why do you get so much doublespeak when you ask plainly for a diagnosis. I often feel it's like "I'm too dumb to understand" so why bother giving me a straight answer.

John McManamy said...

Hey, Smitty. Many thanks for giving me the incentive to write this. :)

John McManamy said...

Hey, PaintFreak. Very good point. The cynic in me says they don't get paid to spend an extra minute to inform you or at least put you in touch with where you can learn on your own (NAMI, DBSA, websites, NIMH, a reading list, etc). Very little trouble, but they can't be bothered.

Cathy K. said...

Thank you so much for this, John; it's so helpful. My psychiatrist does seem to listen to me regarding my reactions to meds at least, and doesn't seem to be on toooo much of a high horse. I did deal with a neuropsychologist, though, who didn't want to know anything at all about me; he was a truly bad and scary experience. But that's another entry, right? I'm very glad you wrote this; I'm going to read it over again later.

noch said...

i like the article!!! and i agree with it
i must say though i'm very lucky i have a pscyhologist who's most of those things! and i think i'm improving a lot with his support. i have waned off medication though with my doctor's agreement. i prefer not popping foreign articles into my body. for a while i was taking traditional chinese medicine, which i'd argue is more natural and herbal. and now acupunture, completely unintrusive...
anyways, thanks for your blog. i just stumbled across it recently. it's inspiring to read other people's muses as we all struggle :)

noch said...

i like the article!!! and i agree with it
i must say though i'm very lucky i have a pscyhologist who's most of those things! and i think i'm improving a lot with his support. i have waned off medication though with my doctor's agreement. i prefer not popping foreign articles into my body. for a while i was taking traditional chinese medicine, which i'd argue is more natural and herbal. and now acupunture, completely unintrusive...
anyways, thanks for your blog. i just stumbled across it recently. it's inspiring to read other people's muses as we all struggle :)

Lizabeth said...

Hi John, You didn't think I would restrain myself from commenting on this one did you.

I guess I have been lucky in my pdocs or maybe its because as a former RN I had my "Now don't you even think of messing with me doc" stare perfected before I got treatment.

A lot depends, I think, on how much attention the pdoc pays to the insurance companies---the approximately 15 minute visit is standard for mdocs too, unless you are getting a procedure done.

Taught to listen---I doubt it. If it doesn't come naturally, it is a very specific skill set that takes more than one lecture to teach.

I really don't understand pdocs not explaining things, unless they are afraid to admitt there is so much they don't know and can't do.

There is already a Patient Bill of Rights. All accredited hospitals are required to follow it and surprise--it covers just about what you said only in more general terms. Its a shame that those who are supposed to help us need the reminder of one specific for us.

Calm Fury said...

You are making a difference and I thank you from the bottom of my exhausted, battered and broken heart.
I am mother to an unstabilized Bipolar teenaged daughter. We have been fighting for many years to achieve the golden grail of balance/stabilization.
You, sir, are a beacon of light!

Joanne said...

I was lucky enough to have the means to go to a psychiatrist who doesn't accept insurance. While none of the drugs worked for me and to some I had dangerous reactions, she did a good job of diagnosing me, educating me, and referring me to books about mental illness. She also was very careful to rule out physical causes of symptoms and would not continue prescribing drugs with dangerous/unlivable side effects (e.g., weight gain of multiple pounds per week, loss of bowel control, magnified anxiety, suicidal ideation)even if I were willing to see if the side effects would abate over time. As I proved to be, as she put it "exquisitely sensitive" to psychoactive drugs, I believe she saved me from harm another psychiatrist might caused. However she too scheduled only 15 minute appointments after her initial 1-2 hour intake/diagnosis.
She managed to get/give a lot of info in those 15 minutes and often extended the time to 25-30 minutes when there were problems. It was still a very short time.

Anonymous said...

This is pretty central concern of mine, afterall surely the patient doctor relationship is a first and central prerequisite to a progressive outcome in the positive.
Reflecting on a relative's experience (to give greater possibility of objectivity) in which I am closely involved, the score of their 2 key psychiatrists would be 0 out of 4, set against your four rights.
I would add that negative scores are, quite objectively to my mind, applicable i this context but zero should be sufficient.