Monday, March 25, 2013

Guest Blogger Dr. Allen Frances on the Dangers of Premature Diagnosis

 
We've talked before about psychiatric diagnoses and whether the label can be part of the problem.  See Diagnostic Labels that Change Lives, for starters.   

Today,  Dr. Allen Frances joins us to talk about whether a diagnosis with a poor prognosis can become a self-fulfilling prophecy.  I'll leave you to decide.
_________________________
 The Dangers Of Premature Diagnosis 
 
  Psychiatric diagnosis is a serious business. Done well, it can significantly help a life, sometimes save it. Done carelessly, it can lead to disaster, even to premature death.
  I have been witness to many thousands of patients who benefited greatly from psychiatric diagnosis and treatment. But I have also seen many hundreds who have been harmed by it.
  When you lose a son partly as the result of a premature and wrong diagnosis, it ignites in you a painful and prolonged search for answers. Suzanne Beachy shares her deep and heartfelt perspective here


  Ms. Beachy writes: 

  I, along with a growing number of fed-up mental health consumers and family members, believe that disability and loss of hope can often be made worse by premature diagnosis that highlights weakness, ignores strengths, and predicts a dire prognosis based on meager evidence.
   Jumping to a diagnosis of schizophrenia and starting long-term pharmaceutical treatments can turn a potentially temporary problem into a chronic one. In the not-too-distant past, a person reacting strangely to extreme distress was said to have a “nervous breakdown.”  People who “broke down” were expected to become well again. Today, the diagnostic names are scarier and the prognosis is expected to be much grimmer- in a way that can become a self-fulfilling prophecy.
  At age 21, my son Jake landed in the psych ward of a teaching hospital because he was having a 'psychotic episode.' Although he had no prior history of mental problems, the psychiatrists immediately emphasized that he had a life-long and serious 'mental disorder' with no hope of recovery. Among the staff, there seemed to be absolutely no interest in the possibility that his problem could be brief and temporary.
  On only his second day on the psych ward, he was told that he probably had 'schizophrenia.' The next day, his doctors were leaning toward a diagnosis of 'bipolar disorder.' Why not the much less discouraging and more accurate 'brief reactive psychosis?' It was never even suggested as a possibility.
   Jake was told that the stresses in his life (the potential loss of his home and his best friend, capped off by 9/11) would not bother a “normal” person. None of the clinicians expressed any willingness to help Jake reclaim his life. They were all laser focused on which chronic DSM diagnosis might best 'fit' him so they could assign him to a long-term drug protocol."
  In hospital, a low dose of olanzapine helped him to finally sleep at night (for the first time in weeks), and he was steadily improving. But that was not good enough for the white coats. They insisted on titrating the dosage immediately to the 'therapeutic level' and adding lithium. Jake was told he needed these drugs like a diabetic needs insulin.
  Alarmed by the staff’s refusal to engage in any sort of dialogue about the situation, Jake and I fought for his discharge (A.M.A), and he left the hospital with a diagnosis of 'Psychosis, NOS.' His outpatient psychiatrist, aptly named Igor, told us that Jake’s brain was 'just like a broken bone' and the drugs were 'like a cast.'
  Unlike a broken bone, though, Jake’s 'broken brain' would need to be immobilized by the 'cast' of medication for AT LEAST a year in order for his brain to heal. And even though the drugs almost completely incapacitated Jake, and he requested a reduced dosage, Igor refused.
  A doctor friend of mine says that when a psychiatrist tells a young adult he/she has a life-long mental illness, hope crumbles. Being told that mental illness is like diabetes is misleading and discouraging. This is not a fair comparison.
  Diabetes is due to a well understood defect in a body part, the pancreas. Mental illness, on the other hand, literally means that your mind is sick. Your mind, unlike your pancreas, is not just a body part. Your mind enables you to relate, set goals, dream, and have hope. If you and the people around you believe that your mind will be defective and sick for the rest of your life, you are left without hope of ever having the agency to build a life.
  The dire prediction of chronic disorder became a self-fulfilling prophecy for my son Jake. Being told he needed to 'set more realistic goals for himself' presumably because of his 'chronic mental illness,' Jake gave up on his goals and decided he might as well be homeless. And that’s the way he died in April of 2008, two weeks after his final birthday. (Happy Birthday, Jake).
  What I have learned in the wake of Jake’s tragedy is that psychosis, mental breakdown, going bonkers – whatever you want to call it – need not be a self fulfilling prophecy of permanent illness.
  We need not burden distressed young people with hope-sucking labels of chronic mental defect. There is a better way.


  Thanks so much, Suzanne, for sharing with us your tragedy and your grief. Surely, your experience will be helpful to others faced with a similar situatIon.
  Young people are particularly difficult to diagnose accurately. Their track record is so short; the future course is impossible to predict; developmental factors unpredictably affect the clinical picture; and substance use is so common.
  We should preserve uncertainty when it is the most accurate prediction of the future. The most common mistake in psychiatry is to prematurely jump to conclusions and to mislabel someone with a inaccurate diagnosis that has a terrible prognosis.
  It is much safer to under-diagnose than to over-diagnose and much better to encourage realistic hope than to shoot from the hip with unrealistically gloomy predictions that can become self-fulfilling prophecies.
  Diagnosis most often helps, but sometimes hurts. The loss suffered by Suzanne Beachy reminds us just how high are the stakes. We must get it right and first do no harm.


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Dr. Allen Frances was the Chair of the DSM-IV Task Force.  He hasn't been so happy with the DSM-V.  He is author of Saving Normal: an Insider's Revolt Against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life.


66 comments:

Nathan said...

Again, Bayesian reasoning would be helpful here. Vast majority of people throughout modern recover from psychiatric distress without professional or pharmaceutical intervention, even "most serious" distresses. I think it is usually most likely to be correct to predict positive prognoses, especially if someone has access to friends, family, community, work, and other kinds of stability. It really should be only after someone's distress worsens in their network, can't access different ones, or loses it, may the balance of prognosis shift to more risky intervention. It must remain clear though, intervention, particularly the standard of care for what is called psychotic bipolar or schizophrenia is rarely more than a better than two bad options. Even the diagnosis should wait until not having one is more problematic than having one. Only when it becomes better option should it be considered, and only for little time as possible until other parts of people's lives stabilize.

Joel Hassman, MD said...

I read this post and was just dumbfounded on what to make of it.

I am a big fan of Dr Frances, because he is one of the few people in our profession who has clout and has consistently, persistently, and responsibly taken on the APA is this fraud of a manual coming out in May, that is selling the "broken brain" analogy/metaphor in the above letter.

So what is it going to be, Shrink Rap writers, post something that, in my opinion, takes psychiatry to task in not treating individuals but just "bones" off an assembly line per diagnostic impression, or, continue to be at least a little inconsistent, if not flagrantly inconguent, if you cannot ask yourselves why you belong to an organization that talks a good game, but fixes the end in their own favor before you even take the field?

Here's an analogy that might make my comment a bit clearer: why attend a lecture of how to get out of debt when you learn it is sponsored by the Democrat Party, and all the organizers are passionate partisan members? Or, to show I am not a partisan hack myself, go to a lecture on how to maximize peace sponsored by the republican party?

You know the Groucho Marx quote about being a member, well, why are you after this post?

And to any colleague out there who is trying to maintain objectivity in this world of confusion, why buy the DSM5 and support this kind of mentality the mother above wrote so painfully about front and center?

Hey, I would say this in your living room. And I would finish with this: "if you don't stand for something, you'll fall for anything."

Thank you for the opportunity to comment, this was an excellent post.

Anonymous said...

Here is a link to the written text of the video for those who are interested:

http://recoverynetworktoronto.wordpress.com/2012/08/14/whats-next-for-the-truth-suzanne-beachy/

AA

jesse said...

Oh no! The dangers of premature diagnosis, incorrect treatment, incorrect medication, no medication when the correct one would be life saving, too-late diagnosis, all are real. Yet Suzanne's story did not explain anything. She pushed Jake to leave the hospital AMA, encouraged him not to take the medication his psychiatrist prescribed, but then his life was ruined because he was told he needed to set more realistic goals for himself? Really? That's all it took? Perhaps, whatever the correct diagnosis was, he was much sicker than the mother is willing to acknowledge.

I have huge respect for Dr. Francis, an eminent psychiatrist. We all understand that "getting it wrong" one way or another can lead to catastrophe, in medicine as well as anything else. But I wonder why he gave us this example, unless a great deal of pertinent information has been left out.

jesse said...

What might have been the case was not that the diagnosis was "wrong" but that it was conveyed to the patient and mother in a rushed and ill-timed way, without compassion or thoughtfulness. To tell anyone right at the outset that they have schizophrenia is likely very poor timing. It is not diabetes, as was pointed out. And it may be that the disastrous result was an outcome of that, rather than the diagnosis per se.

How to speak to patients, the sense of humanity, empathy, and compassion, is often the most important part of psychiatric practice. Unlike surgery or endocrinology. The pancreas does not feel, but we do.

Posting for Dr. Frances said...

In response to Dr. Hassman's comment:

Thanks. The important thing is not to lose faith in psychiatry, or even in the APA, just because DSM 5 is such a reckless mistake. Psychiatry does great things when done well and most of the worst practice is done by primary care docs who do 80% of the prescribing of psychotropic meds. The APA was a very useful organization for the 20 years when it was led by Mel Sabshin. The current leadership is incompetent, but there will soon be a change at the top- so this may be a bottom and there is hope things will improve. My goal now is to protect patients from harms of DSM 5 without discouraging them from getting treatment they need.

In response to Jesse's first comment:

I have reviewed the records of hundreds of patients who have had bad treatment outcomes. The clearest message is that it is never possible to single out any one thing as causal. So certainly, Jake's tragedy would have had many, many causes- not just the grossly premature diagnosis and the unduly pessimistic prognosticating. But these are both frequent problems that in my experience do cause palpable harms and can become self fulfilling prophecies. And I think you are way off base in your assumptions about his mother's role. She was a completely responsible parent doing her best to deal with a completely impossible situation that was made worse by incompetent psychiatric diagnosis and insensitive communication.

In response to Jesse's second comment:
Eloquent and true re communication. But here it is not just the clumsiness of the messenger, it is the prematurity and inaccuracy of the message. Schizophrenia is a very tough diagnosis to make reliably and accurately- especially in a young person with a short track record. The diagnosis has a one hundred year history of being made carelessly and loosely. A wise clinician should exercise caution and have respect for uncertainty. Always under-diagnose rather than over-diagnosis. Time makes things clearer and It is always easier to step up a diagnosis and usually impossible to step one down.


Twitter @AllenFrancesMD
Books available:
'Saving Normal'
'Essentials of Psychiatric Diagnosis'

Posting for Dr. Frances said...

In response to Nathan:

Agree completely. Your common sense approach would be perfect. Unfortunately, Bayes is working the other way. The drug companies have sold the opposite untruth- that all life's problems are a chemical imbalance requiring a pill. They get to spend billions of dollars advertising misleading stuff that influences clinician and patient behavior in just the wrong direction. In contrast, your brand of clinical common sense doesn't have any marketing budget.


Twitter @AllenFrancesMD
Books available:
'Saving Normal'
'Essentials of Psychiatric Diagnosis'

marion said...

I have a question about this. It says Jake was almost completely incapacitated by the meds while he was outpatient...Is that supposed to happen? It sounds logical to me that he lost hope. I thought the drugs were supposed to make him better, not incapacitate him. That makes me think the doc wasn't listening when Jake asked for a lower dose. What could it have hurt to give it a try? I don't like that the docs implied to him that this kind of incapacitation was for the rest of his life and didn't respond to his request for a med change. It's not like he asked to go off completely, he just wanted to be able to have quality of life.

Anonymous said...

Marion,

Sadly, the doctor ignoring Jake's request to lower the med dosage is quite common when people have schizophrenia.

I know someone with the condition who ended being committed against her will because she admittedly became belligerent when the doctor refused to change her med. He blamed her side effect complaints on her mental illness and I wouldn't be surprised if Jake's doctor was did the same to him

It just seems like once you get an "MI" label such as schizophrenia, you generally are deemed as not credible and all your concerns are brushed aside. That is a real disgrace.

AA

Joel Hassman, MD said...

I would like to thank Dr Frances for personally replying at this thread. As was said in the Antisocial Case Study in your DSM4TR Case Study guide back in the late 1990s, "if this sounds pessimistic, it was meant to be", I think you wrote that?

We as responsible, independent, care focused providers are tired of the false hope and empty promises of an organization that abandoned the real needs of psychiatry at least 18 years ago with the election between Drs Sharfstein and Eist about the future of managed care in psychiatry. Eist won, but common sense and fierce advocacy was dumped on severely, and what did the APA do this year to enhance their allegiance? Sign off on supporting the new CPT codes that, ready for this if not aware, they profited further by charging to attend seminars to learn how to use them without risk of fraud charges, oh, and to maximize reimbursements that are in fact lower than told!

Then, the ongoing collusion with the pharmaceutical industry going on for decades that has been the horrific embarrassment to all of us trying to treat people, not biochemical imbalances. And to see some of the worst offenders be voted as President or other offices for the past 10 years, come on, cronyism uses the APA as a poster child now in the definition.

Finally, (yeah,the last one) DSM 5 as you have pointed out for the past 2 or more years, what a travesty. Doesn't the patriarchal attitude of your colleagues you probably once worked with even annoy you a little at least? Organizations that are founded on the public trust have no business getting the free pass that too many colleagues who try to claim being true advocates, yet belong to this group, are asking for now.

You can't have it both ways, if the opinion that this Manual is compromised has merit. Yes, I am one pissed off psychiatrist, because the hypocrisy, the lack of commitment to the core principles that drive the field when it was respected and deferred to when I first started, and the sheer gall of claiming concern for patient care when KOLs have been excessively profiting off the golden calf of pharma and then teaching false standards of care to non psychiatrists, well, I think the rant is over.

Good luck in your quest for the holy grail of truth and well being for the public. Negotiate with characterological people who only know one way, theirs or NO WAY, well, we know how that ends.

But, I do appreciate you commenting, even if you have to endure the harsh and disappointed commentary of a colleague.

Live well and prosper!

Alison Cummins said...

Jesse and I don’t usually think the same things are important, but on this one we are on exactly the same spot:

“Yet Suzanne's story did not explain anything. She pushed Jake to leave the hospital AMA, encouraged him not to take the medication his psychiatrist prescribed, but then his life was ruined because he was told he needed to set more realistic goals for himself? Really? That's all it took? Perhaps, whatever the correct diagnosis was, he was much sicker than the mother is willing to acknowledge.”

Dr Allen Frances’ response that “his experience” tells him that premature, pessimistic diagnoses cause schizophrenia, and that Suzanne is a well-intentioned mother who loved her son, in no way addresses Jesse’s criticism of the choice and interpretation of anecdote.

“Experience” convinces people of lots of things. (Bleeding cures fevers; refrigerator mothers/ vaccines/ video games cause autism; homeopathy treats preschoolers’ URIs.) It’s completely inadequate as a basis for medical practice and anyone who hopes to be influential needs to be able to do better than that.

Whether Suzanne was a loving mother is not germane to the question of whether she correctly assessed how sick Jake was or balance of benefits and harms of the medication Jake was taking. People who want to be influential often do change the subject — but usually they are trying to be politicians, not scientists.

mctps said...

"It just seems like once you get an 'MI' label such as schizophrenia, you generally are deemed as not credible and all your concerns are brushed aside."

There are many ways of losing credibility. One of them is giving the impression of being psychotic (whatever that word means from a rigorous, philosophical point of view), another is simply expressing untimely ideas or peforming untimely deeds; yet another is falling for drug company propaganda like a small child and then never revising your views even after proof of game-changing publication bias and other realities is provided.

There are a lot of people who will never again take someone seriously after that person has become known as schizophrenic. There are also a lot of people who will never again take the current generation of psychiatrists seriously. The difference is the psychiatric community shows no signs of remission, years after universal internet access to clear proof demolishing all the biggest paradigms regarding current drug treatments. I suspect a lot of them are aware of that proof and even accept it, but remain quiet and apathetic out of shame or fear or despair. Yet what they should be doing is boycotting all antipsychotics and antidepressants (which don't work anyway) until the drug approval processes are revised so that all the submitted trials of a drug must be taken into consideration when evaluating the efficacy of the drug and whether to approve it for the sought for use. And other such obvious tweaks aimed at eliminating approval of drugs based on trials whose success was a fluke.

Incredibly, impossibly, unbelievably, the FDA policy is you can still submit any number of trials of the same drug, and only two of them must show "efficacy". What needs to happen is that a sane standard be instituted, and then applied retrospectively to everything ever approved. Wouldn't you think?

Suzanne Beachy said...

@ anonymous – thank you so much for posting the link to a transcript of my TEDx talk on the truth about treatment for “psychotic disorders.” Perhaps it will help posers here to learn about the remarkable success of clinicians who reject the standard American psychiatric paradigm.

Another great resource is this brief TEDx talk by psychologist and former schizophrenia patient Eleanor Longden. Like my son Jake, she was also drained of hope by standard psychiatric treatment. Until she met a brilliant and compassionate psychiatrist, Pat Bracken, psychiatric "treatment" nearly destroyed her life and her future.
http://www.youtube.com/watch?v=AgZHOSxN5cE

Posting for Dr. Frances said...

In response to Dr. Hassman:



I am no defender of APA. I have called for a congressional investigation and their being stripped of their monopoly control of psychiatric diagnosis. http://t.co/Vv2ZR3xReQ And I am not blind to bad psychiatric practice as this blog shows. But I still believe that psychiatry does a great deal more good than harm and that although APA has gone thru 15 years of really incompetent staff leadership, it once was and still again could be a useful organization.

In response to Alison Cummins:
You are missing the point. Premature diagnosis is a simple mistake that needs to be corrected. It is of course impossible to know for sure that Jake's life would have worked out better if that premature diagnosis had not been made, but that doesn't make it OK for the diagnosis to have been made prematurely. We should not be defensive about bad psychiatric practice or quickly jump to blaming the parent. You don't know how tough it is until you have a sick kid.

In response to Marion:


Getting the right medication and right dose of medication can be difficult and requires the close collaboration of doctor and patient. It takes time and patience on everyone's part.

In response to mctps:

I disagree strongly with your statement that the medications are useless- they are very useful when used cautiously and for the right reason. The problem is that medicine has been oversold and is used too freely and carelessly.

Alison Cummins said...

In response to Posting for Dr Frances:

Please don't make assumptions about me. I have a brother who has a dual diagnosis and I am the one trying to ensure he has appropriate care. My experience with him has been of a reluctance to diagnose anything until he stopped smoking weed, even though he had been mildly symptomatic before he started smoking and it was clear that he was very disabled. (By which I mean that he was living in the MI wings of homeless shelters where he walked up and down talking aggressively to interloocutors nobody else could see, frightening staff and other residents.) Until he was arrested for stealing a bicycle and throwing it at a cop, the most we could get a psychiatrist to say was that they'd talk to him again when he stopped smoking weed, and not until then. Once he was in treatment his symptoms were controlled by medication and his quality of life improved considerably. He moved into an apartment on his own and held a steady, part-time job for the first time in his life.

(I have an unrelated diagnosis and my personal experience is of high barriers to treatment and care meaning that I spent years seeking and being denied care and suffering badly as a result. I wasn't able to get treatment until I became so disabled that I couldn't work and was stuck in an abusive relationship. Once I did get treatment I got well-paid, full time work for the first time in my life and was able to change my situation. But my story is unrelated to your "accusation" that I do not know what it is like to be responsible for a relative with a mental illness.)

So. Now that's out of the way, let's go back to the story of Jake, which you seem strangely reluctant to examine.

Alison Cummins said...

In response to Posting for Dr Frances, Part 2:

I'm not blaming or accusing Suzanne in the least. It's just that Jake's story as told has such obvious alternative hypotheses that it's unclear how you think this particular anecdote supports your thesis. It's puzzling. To repeat what Jesse said: "The dangers of premature diagnosis, incorrect treatment, incorrect medication, no medication when the correct one would be life saving, too-late diagnosis, all are real. Yet Suzanne's story did not explain anything. ... I wonder why he gave us this example, unless a great deal of pertinent information has been left out."

That's it. That's all. If you have no better anecdote to illustrate the damage premature diagnosis can cause, and you have presented no data, the rest of us are left scratching our heads.

It's a little bit as though you said, "it's important to keep your eyes on the path in front of your feet because if you don't see an obstacle you could fall and break your ankle. Sally ran into traffic chasing a ball without looking down at her feet and now she has multiple injuries, including a broken ankle." Without more detail, it's unclear how the story of Sally illustrates the perils of not looking down at your feet when there's such an obvious alternative interpretation that it illustrates the perils of not looking for cars. Nobody's denying that it's important to pay attention to what's at your feet and nobody's blaming Sally for playing sports. We just don't understand why you chose Sally's story, told in this way, to make your point.

I don't think our puzzlement is that difficult to understand. If your thesis is correct, you must have many more clear anecdotes, or at least confabulated case histories, that make the point better. "Jane was birdwatching in the mountains. She was walking without looking at the path, then she tripped over a stone and fell and broke her ankle." There is no obvious alternative hypothesis. While we imagine that there must be other contributing factors to the break - most people would just sprain their ankles - it's clear how Jane's story supports the thesis of a link between inattention to the feet and broken ankles.

If your thesis is correct, you must also have data.

Nobody's saying your thesis is incorrect, you just haven't shared any of the reasons that brought you to where you are and we're confused about why you would think you had. Changing the subject, as you have attempted to do repeatedly, is not helping.

shriners said...

I don't really care about the "facts" of one particular case, and who is to blame. There are better models, as Dr F is trying to state. Here is one: http://www.camh.ca/en/hospital/care_program_and_services/schizophrenia_program/Pages/guide_first_episode_program.aspx

Anonymous said...

While I understand Jesse's concerns, at the same time, I wonder if he would apply the same critical analysis he is demanding of Dr. Frances if there was a pro psychiatry story that left out important details.

Alison, since Suzanne Beachy seems to be following this thread, why not ask her what happened since she would know the best? Of course, she may not answer your questions but it is worth a shot.

AA

Posting for Dr. Frances said...

Responding to Alison Cummins:

Sorry for the assumption and congratulations to you and to your brother. We do very much agree one thing- the disaster that it is very hard to access mental health care, made worse by dramatic MH budget cuts. It is a shame that we now have more than 1 million psychiatric patients in prison because there is not enough treatment or decent housing.
http://www.huffingtonpost.com/mobileweb/allen-frances/prison-prison-population-_b_2811448.html
Re the blog, my warning is that jumping to premature diagnosis is harmful- I think that speaks for itself and I won't belabor it.

Dinah said...

Dr. Frances does not have computer access and has been sending me his responses from his phone. At this point, 24 hours after posting, I am going to relinquish my role as intermediary. Future comments are welcome, but please don't assume that Dr. Frances will see them.

Dr. Frances has asked that readers not use his Shrink Rap guest post as a venue to criticize Suzanne, the mom, in this post. Regardless of what how you feel about what role premature diagnosis had in this story, we can all have sympathy for a mother who has lost a child.

Thank you, everyone, for a great dialogue.

Alison Cummins said...

Oh dear. That’s too bad. I had been mulling over my incomprehenion and had come up with some questions for Dr Frances that would have helped clarify his position for me.

1) What is your definition of “premature diagnosis”?

2) Who made the premature diagnosis in Jake’s case? What was the diagnosis and how do you know it was premature?

3) How do you distinguish between “premature diagnosis,” “inappropriately negative prognosis” and “poor communication about prognosis and treatment plans”?

4) In Jake’s case, what was the harm specific to “premature diagnosis” that was separate and different from the harms caused by “inappropriately negative prognosis” or “poor communication about prognosis and treatment plans”?

Dr Frances has left us with a “because I say so” which seems inconsistent if his goals include greater openness to communication. It’s possible that he rejected Jesse’s proposal that communication was the central issue because communication is not what he’s worried about? That he sees “premature diagnosis” as a separate issue from communication because he feels that this is something that can be effectively addressed at an administrative level without coaching each individual psychiatrist on how to cultivate optimism? If that’s the case, it would have been really interesting to see that idea developed.

I know that communication can be surprisingly difficult. I am an educated layperson and I didn’t understand the ICU doctor when he tried to tell me that my mother was dying. I imagine that he concluded that I was in denial because he gave up immediately, but it was much more complicated than that.

My mother had many doctors who each said different things. It was very difficult for me to tell when a doctor was telling me that things had changed as opposed to adding new information on top of old information that was still good. The ICU doc took me aside in the hallway. I expected that if someone were asking me to consent to withdrawal of treatment, that there would be cues like being taken to a quiet room and sitting down with the doctor. On the other hand, when the ICU doc made the identical statement to my sister, using the same language and gestures in the same hallway, she understood immediately. Not coincidentally, my sister is a doctor.

So I am acutely aware that communication can be difficult and that it can be hard for a doctor to understand where the difficulties are.

I don’t think these are bad questions or that I am a bad person for needing them answered in order to understand.

But they won’t be answered so I will not understand.

Alison Cummins said...

Anonymous AA, I don’t wish to challenge or quiz Suzanne Beachy. She knows what she knows and her experience is hers. As someone who has been through the wringer myself I am certain she and her son were badly done by.

This is a blog by psychiatrists for psychiatrists. I hang out here because I want to better understand how psychiatrists understand our (patients’)experiences. Suzanne Beachy has told her story and that’s enough for me. I get it. What I’m missing is what Suzanne Beachy’s story means to Dr Frances and what he hoped to communicate by telling it here. My mother’s ICU doc was able to communicate something with a hand gesture to my sister that he wasn’t able to communicate to me with the same hand gesture. But it’s not just a matter of background: Jesse is a psychiatrist and didn’t understand what Dr Frances was getting at either.

mctps said...

"I disagree strongly with your statement that the medications are useless- they are very useful when used cautiously and for the right reason."

And of course you would have some evidence to that effect beyond a combination of anecdote and confirmation bias? Sorry, but thanks to the Freedom Of Information Act, we now know that serotonin based antidepressants aren't any more effective than placebo, at least when the placebo is of the proper sort, i.e. causes side effects like the drug so that the trials could be said to be "double blind" in reality and not just in fantasy. (Side effectless placebo pills are the norm though... Funny there'd be this level of incompetence in research methodology in a multi billion dollar field of medicine. Now how could that be?)

Anyway, rather similarly meta analyses of trials of antipsychotics show either no efficacy beyond placebo, or just enough more efficacy that it can easily be explained as the product of publication bias (similar to what has already been proven to be the case re antidepressants) or as poor methodology (25% reduction in the symptoms of a patient counting as "efficacy" not distinguishable from 100% reduction in symptoms, at least from reading the abstract). One of these is a prominent meta analysis published in Nature a couple of years ago, so of course you would have heard of it.

For decades, it has also been public information that the dopamine hypothesis has no basis in empirical science: the studies show that unmedicated schizophrenics have normal levels of dopamine in their brains (metabolite analysis), and that any increase in the number of dopamine receptors observed in studies has been caused by the drugs, not the supposed illness. It's ironic that the only chemical imbalance we are aware of in the brains of schizophrenics is that caused by the drugs.

So, those are the facts. But as pointed out by James Clerk Maxwell, new information like this never becomes accepted among the experts until they die of old age and new experts, educated in the new paradigm from the beginning, replace them. But indeed the cat is out of the bag by now, and there's no power on earth that will put it back in. In retrospect, it has always been obvious that the dying paradigm was a really, really simple-minded way of attempting an explanation of so-called psychotic phenomena.

Athena said...

Alison, people might be more responsive to you if you would treat them with a modicum of respect.

Suzanne Beachy said...

@ Jesse - Nobody “pushed” Jake to leave the psych ward. He wanted out, and I could certainly see NO reason for him to stay. The staff had absolutely no “help” to offer him except for drugs, more drugs, and dire predictions. They seemed incapable of relating to him as a human being. In hindsight, I don’t think they were able to acknowledge that he had any value beyond being grist for their drug trial mill. (Not uncommon. See the case of Dan Markingson at the University of Minnesota.)

In contrast to what you claim to "know" about our family's experience, I was neutral about Jake’s outpatient compliance with the drug treatment until he landed in the ER several months later with a severe dystonic reaction. It took hours for the E.R. docs to realize that the Zyprexa was causing the problem. It was a very scary experience and excruciatingly painful for Jake. Nobody had warned him of the possible neurotoxic risks of the drug Zyprexa.

Jake’s experience with dystonia changed my attitude about “antipsychotics.” Afterward, I wondered if they might be chemically related to snake venom.

I could write a book about Jake’s 6-and-a-half year struggle. Surely you can understand that I’m quite limited by several hundred words of a blog post. If you were a curious type, you could learn more from watching my TEDx talk or watch Eleanor Longden’s. There are also a number of stories about her in the U.K. press. Her story is VERY much like Jake’s except that hers has a happy ending.

Jesse, what do you think of the outcome data for Finland’s Open Dialogue treatment of young “psychotics?” Had Jake and I lived in Western Lapland, where they’ve pretty much wiped out the schizophrenia diagnosis, Jake would likely be not only alive, but thriving. Sadly, he’s just another casualty of careless, thoughtless, standard American psychiatry.

Let the take away from Dr. Frances’ message be “Do no harm.” And I would add, “Try to facilitate healing.”

jesse said...

The most important message here from Dr. Frances is "We should preserve uncertainty when it is the most accurate prediction of the future. The most common mistake in psychiatry is to prematurely jump to conclusions and to mislabel someone with an inaccurate diagnosis that has a terrible prognosis. It is much safer to under-diagnose than to over-diagnose and much better to encourage realistic hope than to shoot from the hip with unrealistically gloomy predictions that can become self-fulfilling prophecies."

This is absolutely true and very wise.

Dinah said...

I've been sitting on my hands, trying not to type for a couple of days now. I'm surrendering.

I agree with Dr. Frances that premature diagnosis and overdiagnosis are not good things: they distress patients and they reflect poorly on our field.

There does not seem to be a way to know if Jake's tragic outcome was the result of a horrible mental illness or the result of a self-fulfilling prophecy of a bad diagnosis. I like to think that if he got better he would have risen above and proved the doctors wrong.

I am appalled that anyone would see a young person for a first admission and foretell a dismal prognosis. Perhaps the doctors on inpatient units have a skewed perspective. In outpatient practice, people get extremely sick and extremely better. The severity of an episode of mental illness predicts nothing, unless the patient dies during it or commits an act that throws them into the legal system in a way that makes recovery hard (if the patient kills someone, it's hard to bounce back). But not everyone is fine, some people don't get treatment and end up on the streets and dead from their illness. It may have gone better here if the doctors could have worked with Jake to maximize his engagement with treatment. I can't really comment without hearing all sides. Psychosis NOS sounds like a reasonable diagnosis, since NOS generally does not imply a specific prognosis or etiology.

I did not read into the post that Suzanne encouraged her son to leave the hospital early. Suicide in a child is one of the worst( if not The worst) things a parent can go through, so she has all my sympathy.

I was perplexed by this choice of a story. I thought Jake would get much better, proving the doctors wrong. Instead, I was surprised to read that he died tragically, proving the doctors were right with their poor prognosis.

We all know of people who've been really sick who have recovered. We don't know a prognosis without waiting, though I do admit that I often will tell people that they are going to get better (and they generally do!) because we do know that chronic illnesses are chronic and episodic illnesses are episodic. If you've had episodes in the past and have made a good recovery, it's a good bet that you will make another good recovery.

We also know people with "poor prognosis" diagnoses that thrive. Kay Jamison, Elyn Saks, Marsha Linehan, to name a few famous folks with bipolar disorder, schizophrenia, and ?. We also know that many people with more benign diagnostic labels can be quite disabled and even dangerous.

I hope the blog post or comments from our readers did not injure Suzanne more.

Suzanne Beachy said...

Jake did not die from suicide. Why would you assume that?

I would encourage people here to look at former mental patients who have completely RECOVERED their lives after a diagnosis of schizophrenia - people like Daniel B. Fisher MD, PhD (whom I paraphrase in my blog post,) Eleanor Longden, Jacqui Dillon, Ron Coleman, Leah Harris, Louise Gillett, Will Hall, David Oaks, Jim Gottstein, the list goes on and on. And see if you can detect some common factors in their cases. You could learn a LOT from psychiatric survivors - especially the ones who have reclaimed their lives after a diagnosis of what is known as severe mental illness.

Dinah said...

Guilty as charged, I read the post a few days ago, obviously not closely enough. I thought it said that, but I was wrong. I remember thinking after I read the post about the high rates of suicide in people with schizophrenia and I started thinking about a good friend whose brother had schizophrenia and died of suicide, and I guess everything muddled in my brain. I am sorry for the mistake and my sympathies on the loss of your son remain. As a mom, I can think of nothing worse.

Some people with schizophrenia were misdiagnosed and other thrive despite the presence of the illness.

I absolutely agree that we should not tell people we barely know that they can't work or will have bad lives. I've seen very psychotic people be able to hold jobs and live good lives.

We seem to be mostly agreeing here.

Anonymous said...

Ms Beachy,

My condolences also at the loss of your son.

Unfortunately, the search function seems to not be working on my computer. But when you get a chance to use it, you will notice that I have mentioned the Open Dialogue program many times on this blog to no avail.

The last time I did, Dinah responded by stating essentially that talk therapy for schizophrenia was not backed up by research. I gave up in utter frustration for obvious reasons.

The Shrink Rappers are sadly no different from most of their colleagues in not believing that folks with schizophrenia can recover without meds and thrive. Or if they do believe this can happen, they preface it by stating the person had to have had a mild case or was misdiagnosed.

I had hoped that when you posted about the program, they might respond at least with curiosity about it. But I was sadly deluded.

Unfortunately, psychiatrists like Sandra Steingard, whom I know you are well acquainted with , who were willing to challenge their convention beliefs about psychiatry and meds, are sadly a rare occurrence.

I wish you nothing but the best.

AA

Suzanne Beachy said...

Anonymous - I think it's wise to give up on people who are obviously threatened by and closed to the truth. Just don't give up on everyone. I am fighting for truth with you.

Yes, I know psychiatrist Sandra Steingard. What an extraordinarily courageous person she is. I am thrilled that she has brought Open Dialogue Therapy for the treatment of psychosis to the the Howard Center in Vermont, where she is medical director.

When Dr. Steingard's perspective on mental "illness" was first challenged by Robert Whitaker's research, she says she felt like she'd been "kicked in the stomach." The truth can be hard to accept. It takes some humility, doesn't it? When the truth hurts, some people prefer to pretend it doesn't exist. You and I are seeing that here. And that's too bad.

Keep fighting the good fight. I salute you!

And thanks for your kind words about Jake. This coming Monday is the anniversary of his death.

marion said...

Jake died after being struck by a train while homeless. The post is supposed to be about someone who lost a son partly due to premature diagnosis and him losing hope. I could see why someone would think, based on what the story is supposed to be about, that it was suicide. I thought it was a suicide...unless Jake passed out on the train tracks or got stuck somehow. I have a father who almost died after being stuck on a train track with two friends as a kid on their motor scooters. One of the friend's died while trying to beat the train. My dad and the other kid jumped off their scooters, clung to the side rails (I think they were high up over something and couldn't just jump), and the train zoomed past, destroying their scooters. The other kid almost made it to the very end, where he could have veered off the tracks, when the train hit him. It can happen that someone gets hit by a train.
It's just pretty rare and I would think it's usually a suicide.

Joel Hassman, MD said...

2 points I would like to forward here:

first, my attack on the APA is not directed to Dr Frances, and I respect his hope and optimism the organization could be healed into the prior supportive and truly representative role it had up to the early 1990s. No, my attack is on anyone who is a member now and claims to be invested in the well being of the population the APA is ruining with the pending DSM5. Mutually exclusive agendas, in my opinion.

Second, I read this post to be saying doctors have to end this all or nothing approach to treatment. Life is gray, and that includes illness, and, IN MY OPINION, better to err in underdiagnosing in the beginning with an NOS determination, than just focus on a selective diagnosis that has the risk of selective interventions.

Also, I just want to ask any and all provider readers/commenters this: Do you really think the majority of our colleagues, and that means 50.01% or more, do NOT just quickly diagnose and cookie cutter prescribe for said alleged diagnosis in the office? And, how many people practicing really want to get collateral information from supports to the patient before you put down a limiting Axis 1 diagnosis of Mood/Thought/Cognitive Disorder of specificity?

I know I do before I call a patient Schizophrenic, Bipolar, ADD, PTSD, and other limiting definitions that could haunt someone for years to come after such patient leaves your office for other providers.

Susannah Senerchia said...

Dinah and others,

Part of the problem is your field acting like these are "illnesses" and people are "sick" when you have no physical evidence of same. People are distressed, yes -- so distressed, to the point that they start to hallucinate, etc., in an effort to survive the overwhelming emotional circumstances they find themselves in. When you insist on seeing people as "ill" instead of simply emotionally at the end of their rope, or past the end of it, you all are contributing to the problem. You are misunderstanding people, not paying close enough or the right kind of attention, and misreading the reasons for their feelings and behaviors. For people who understand that they're not "sick" but in a major life crisis, you are making them even more frustrated and hopeless by your lack of comprehension of their situation, your insistence on masking their emotional reality through pseudo-medical talk. Until the psychiatric profession gets a LOT more humility and cuts out the bogus influence of the medical model on people's emotional distress, and gets a much more common-sense approach to human psychology, psychological needs, the effects of trauma, loss, shame, etc., i.e., until you actually learn what you should be doing in your profession rather than doling out "diagnoses" (please) and pills, you will continue to have a poor success rate and millions will suffer unjustly because of it, as will our society as a whole.

We need real healers - emotional healers are those that can come into a place of hurt, confusion, shame, hopelessness, etc. - all these terrible & negative feelings - and provide enough compassion, understanding, and support so as to restore hope, repair relationships, find new opportunities, and rebuild lives. This is what the work of your profession should be. If you want to sit in a doctor's coat and talk about 'diagnoses' and other pseudomedical trappings and dole out medicines, you are going to be of very limited use to people who find themselves in these emotional and life crises. They need committed, empathetic, psychological, HUMAN support and understanding. They need love & guidance. If you feel that you’re not up to that task, this should not be the profession for you. I recommend that all who would like to understand these conditions better, read psychologist Ty Colbert’s books, including: “Broken Brains or Wounded Hearts: What Causes Mental Illness?” and “Rape of the Soul: How the Chemical Imbalance Model of Modern Psychiatry has Failed its Patients,” and I hope you all have read Judith Herman’s “Trauma and Recovery.”

Joel Hassman, MD said...

S Senerchia wrote this above:

"...When you insist on seeing people as "ill" instead of simply emotionally at the end of their rope, or past the end of it, you all are contributing to the problem. You are misunderstanding people, not paying close enough or the right kind of attention, and misreading the reasons for their feelings and behaviors. For people who understand that they're not "sick" but in a major life crisis, you are making them even more frustrated and hopeless by your lack of comprehension of their situation, your insistence on masking their emotional reality through pseudo-medical talk."

Well, how are you defining "you" and "all" in that third person use? Frankly, I read comments at sites here and other mental health blogs by people who are damning ALL psychiatrists for falsely judging and damning people who are presenting with dysfunction and disruption in day to day needs to be irresponsible in such accusations.

Well, guess what? Some people are legitimately ill, they have real psychological problems that cause significant impairment and will only slip further into profound struggles unless someone with an expertise will offer to help! The examples of patients not treated well are worthy of note, and providers should be aware of the risks in making quick judgments of initial presentations for care needs. But, I advise people who claim psychiatry is completely off base to be prepared to be called on providing what are more reliable and consistently efficacious alternatives than what we do as a whole. Careful what ya wish for!

Yes, there are "colleagues" practicing with less than stellar attention and appreciation to individual needs and abilities. But, people like me who took an oath to practice medicine and offer to treat people who are in need of care are rather insulted by the overgeneralizations by the likely antipsychiatrists that roam these blogs.

If you want to attack individual examples and institutions that seem to consistently provide insufficient care interventions, then fine. But, when I read comments like the above that use vague and nondescript terms like "you", "all", "psychiatry", and "mental health care" as overgeneralizations, well, your choir will applaud, but, to objective and unbiased readers who are looking for answers and direction, watch out for extremist commentary.

There are good psychiatrists out there. As I challenge the above writers with their attitudes about psychiatry, are all police officers corrupt because some have been exposed as such? I will agree that silence by those who know better only aids and abets the villains.

I hope some readers see through the hubris of people treated poorly or insufficiently. It is a shame people are not provided the level of care they themselves need for their specific problems.

As the basis of my blog imparts, people need to look at the whole picture, stop looking for quick fixes to long standing problems. You can't medicate life.

Isn't the point of the post preceding this thread that this young man was basically judged, not followed and reassessed on an ongoing basis? But, do all of us as providers make that mistake?

No, we don't!

And, if I am going to be called as seemingly hypocritical in my comments about the APA as an overgeneralization, then I ask commenters to answer me this: who of clout and respect among colleagues who belong to the APA has actively and persistently spoken out against what is the criticized agenda of the DSM5?

I haven't heard or read it to now.

And why would such person(s) continue a membership with the debate at hand?

Consistency is the hallmark of success!

Suzanne Beachy said...

@ Marion
Dinah probably assumed Jake killed himself because that's just the sort of thing those "mentally ill" do. Another judgment. There was no mention of a train in my above writing. (Maybe you watched the TEDx talk?) BTW, according to a witness, Jake almost made it across the tracks.

My hope is that sharing Jake's story will encourage folks to look at other, more successful ways of helping young people who "go bonkers." Telling them to kiss their lives goodbye because they have an incurable, debilitating brain disorder is not helpful.

How was Jason Russell helped?

Plain Anon said...

I have been helped by psychiatry, therapy and medications. My mental health care providers treat me with empathy and respect. I have also had psychiatrists that treated me with no empathy or respect. I can say the same of doctors in general. Lot of people in medicine are not healers. Psychiatry does not have all the answers, but it does offer help to many. I know many people that deal with anxiety and depression who have found meds and therapy useful. Of course there is room for criticism and it is not a perfect solution.

I am bipolar and I have never taken that to be a life sentence or any such thing. It is a label that is helpful for me to use to work with others for my treatment. So what if I'm bipolar? It means I have to do certain things in my life to be stable (not just meds). I don't drink to excess, I have to be vigilant about my sleep and many other things. I do these things so I can live a productive life, but I have no illusions that this "fixes" me.

One last example. I slipped off some stairs around Thanksgiving and rolled both my ankles. They made a large crunching sound. Went to Urgent Care and the xrays showed nothing broken. 6 weeks later I'm still in considerable pain in my right ankle so I go back to the dr. Another xray, no breaks. I go to a specialist. Got an MRI and sure enough, my tibia had 3 fractures. So medicine told me for 7 weeks that I was fine. It was only by me pushing to find someone to help me that I got a proper diagnoses. Why don't people do the same for mental health?

Dinah said...

I am rather dismayed that I invited an opponent of the DSM to guest blog, with free reign to say what he wished, and willingly published what he sent.

To then be insulted and told that the Shrink Rappers are essentially closed-minded, seems to say that if we entertain any other voice, we should expect to be insulted.

Suzanne, in 20 years of practice in both private practice and 4 public clinics, I have never had a patient commit suicide, so I hardly think it's reasonable to say that "Dinah probably assumed Jake killed himself because that's just the sort of thing those "mentally ill" do." As I wrote already, I read Dr. Frances' post quickly and started thinking about my good friend's brother who had schizophrenia and died of suicide, and I made an incorrect assumption. As soon as you pointed out that Jake had not died of suicide, I acknowledged that I had made a mistake.

AA: is it possible that you would only be polite to us if we agreed with your beliefs? You seem angry that I don't take the time to read what you want me to read. Should I send you a list of textbooks I'd like you to read and insult you if perhaps you are busy or don't choose to make my priorities into your priorities?

We are mainstream psychiatrists. We like the discussion, we've learned a lot from hearing other viewpoints, but I don't like being insulted. If Shrink Rap does not address your needs, please find another blog that does. All respectful disagreement is welcome, but don't insult those who give you a place to express yourselves.

Anonymous said...

Dinah,

I have reread my post several times to see if I said anything offensive and to be honest, I am not still sure what I did wrong. I am open to hearing feedback from you or any other reader to clarify the situation. The last thing I obviously want to do is be offensive.

Hmm, I said I was frustrated which is very different from being angry.

You're right, it is your blog and we do have to keep that in mind which I have tried to do with the several blog comments I have written and the ones I have deleted before posting.

You would be insulting me pretty fast:) if you sent me articles to read because I am a slow reader.

AA

Steven Reidbord MD said...

In psychiatric blogs, one inevitability is that there's no perspective beyond reproach. An anti-psychiatric faction cites horror stories and calls for the abolition of the field, while advocates of the homeless mentally ill beg for more psychiatric services. Biological (medication) psychiatry is criticized in favor of psychotherapy and other humanistic approaches, and there is sure to be a rejoinder from those whose lives were saved by meds.

It's a tough field to pursue thoughtfully and with balance. In my view, Dr. Frances and Dinah do a hell of a good job navigating this minefield. Your opinion may differ. On a related note, I wrote of my current dilemma, whether to attend the APA annual meeting when it comes to my town this year. None of this is easy.

http://www.psychologytoday.com/blog/sacramento-street-psychiatry/201303/going-the-apa-meeting

Anonymous said...

Dinah,
I don't get how Jake's untimely death proved the doctors right with regard to a poor prognosis, as you said. If someone is given a poor prognosis after a cancer diagnosis but then dies the next day in a house fire, does it prove the doctor was right?

marion said...

Regarding: "I don't get how Jake's untimely death proved the doctors right with regard to a poor prognosis, as you said. If someone is given a poor prognosis after a cancer diagnosis but then dies the next day in a house fire, does it prove the doctor was right?"

Dr. Frances wrote in his post "When you lose a son partly as the result of a premature and wrong diagnosis it ignites in you a painful and prolonged search for answers."

Dr. Frances claims that Jake was an example of a self-fulfilling prophecy and that he proved the doctors right, in part, because he lost hope, gave up, and died. Both sides of this argument claim that Jake proved the doctors right. They just think he proved them right for different reasons. Dr. F because it was a self-fulfilling prophecy. Dinah thinks there was more meant to it (mental illness).

I'm actually confused as well. If his death was simply a tragic accident, then I am not sure how it had anything to do with overdiagnosis. The two things sound unrelated.

Susannah Senerchia said...

Joel Hassman, the second part of my comment didn't make it onto the site. Look, when I say "you" I am speaking in a general way about psychiatry as a whole. There are some assumptions the field almost as a whole goes off of which are inaccurate, unhelpful, WRONG. I know not every psychiatrist is the same, but come on. Psychiatry has an incredible amount to apologize for and rectify. They have been misinterpreting human developmental and emotional issues as biological defects for a long time, and it's past time they corrected their theories and offered an apology (and more). People are routinely told they have "biochemical imbalances" with absolutely zero proof of same. They are told they are "ill" when in reality they are psychologically overwhelmed. The fault, the defect is put on them rather than their flawed or difficult environment and the toll it takes on them. They are made to take drugs to cover up their very valid, human emotions caused by difficult life circumstances. No one should have that power over another human being. If you want to offer help, fine, but make it be real HELP that addresses the REAL issues in their lives and don't force your techniques on those who don't want them. That is what your field routinely does and it's WRONG. I'm going to see if I can track down the original second part to my comment because your field as a whole needs a gigantic reality check and a reduction in the respect and power that you currently command. Many of you are so myopic and even clueless about the kinds of conditions you're dealing with - many of you seem unaware of basic psychological needs and principles, yet you command authority and respect on the subject. It'd be laughable if it weren't an oppressive, unjust, abusive travesty. Someone needs to draw aside the curtain and show the silly house of cards that biological psychiatry rests on and the damage it causes to those in need of REAL PSYCHOLOGICAL - "LIFE" - SUPPORT and UNDERSTANDING who instead receive your arrogant labels - "diagnoses" - let's pretend we're doing real medicine, right? - brain-altering drugs, your inaccurate scientific theories presented as facts, oppression rather than affirmation and support, the list goes on... You are not helping people when you present them with the lie that is biopsychiatry. Someone needs to take you down off of your high horses and if you can't offer true psychological healing and support to those who have been through trauma, loss, abuse, neglect, crazy-making circumstances, then you should not be in this field. If all you want to do is dole out diagnoses and medicines than you should be a 'real' doctor who actually deals with the body - not a posing "doctor of the mind."

Joel Hassman, MD said...

Ms Senerchia:

You do not even know me personally, and yet by the end of your above most recent comment, you state:

"...who instead receive your arrogant labels - "diagnoses" - let's pretend we're doing real medicine, right? - brain-altering drugs, your inaccurate scientific theories presented as facts, oppression rather than affirmation and support, the list goes on... You are not helping people when you present them with the lie that is biopsychiatry. Someone needs to take you down off of your high horses and if you can't offer true psychological healing and support to those who have been through trauma, loss, abuse, neglect, crazy-making circumstances, then you should not be in this field. If all you want to do is dole out diagnoses and medicines than you should be a 'real' doctor who actually deals with the body - not a posing "doctor of the mind." "

It is easy to interpret your writing "you" to infer me, and if you take the time to go to my blog, that my name here kindly links, you might read I am a bit critical of my colleagues. But, the writers that I will risk including you as one of the bunch are just interested in vilifying "all" of us, at least until you learn to write different pronouns or other identifying terms that show some effort to not overgeneralize.

Again, reading this post to the thread shows that life is gray, that people both as providers and patients should tread cautiously in taking on care interventions, much less diagnostic impressions, and see the whole picture.

It is a biopsychosocial model to illness, as far as I am concerned. Why aren't some of the usual complainers about psychiatry at least spend some time identifying the growing number of people who come in demanding the meds, who don't want to hear about therapy, who want to feel better today?

Hmm, maybe because some writing here have traveled that path and aren't ready to admit it to themselves, much less other readers.

Just a thought!

And if this reads as arrogance, fine. I am on the net these days to challenge people who just want to continue the extremist battle between clueless providers and narrow minded patients. But, like the failures of government these days, it is not just about Democrats and Republicans. Moderates and negotiable people are out there too. There are a large number of people in between who are seeking to either help responsibly or receive care eclectically.

Man, that color gray is a bitch sometimes, eh?

Susannah Senerchia said...

Joel Hassman, maybe take things a little less personally? I am in no way singling you out as indeed I know nothing about you. I am writing about your profession as a whole, because as a whole, it has many many things to apologize for and correct.

Susannah Senerchia said...

I am sure as someone who is supposed to be an expert in the mind, emotions, and psychology, you can make a better attempt to understand where I'm coming from.

Athena said...

In response to Marion:
How Jake DIED is not pertinent to the argument Dr. Frances is making. What is pertinent is how Jake ended up LIVING – homeless and (I assume) hopeless.

What if, when Jake was told to “set more realistic goals for himself,” he complied by adhering to treatment, applying for disability, and finding a group home or subsidized housing where he could live out his days smoking and drooling in front of the T.V. while the antipsychotics gave him diabetes and atrophied his brain tissue by 1 percent per year?

Who would be “correct” then? This would be considered treatment success for a talented, sensitive, and accomplished young “severely mentally ill” person right? Would it be the correctly diagnosed “illness” or the treatment that got him into such a state? But the important thing would be that he would be alive, huh? – if you can call that living.

Plain Anon said...

In response to Athena:
Or maybe if he'd taken agency in his recovery he would have found a psychiatrist to work with that would find medications that helped Jake find stability. Maybe he would have gotten involved with a good therapist that could help him with the things that were overwhelming and as time went on he relied less on meds and more on what he learned about himself. Maybe he gets a job and a place of his own, falls in love has a family.

I can throw around hypothetical scenarios too, and it really doesn't accomplish anything in this post. You only see harm in psychiatry and I have seen the help, but neither of us know Jake's story.

Susannah Senerchia said...

To all the psychiatrists here, please read "Time to Abolish Psychiatric Diagnosis?" by clinical psychologist Lucy Johnstone at http://www.madinamerica.com/2013/01/time-to-abolish-psychiatric-diagnosis/

Some quotes:

In the words of the official DCP/BPS response, drawn up by the past DCP Chair, Professor Peter Kinderman: ‘Clients and the general public are negatively affected by the continued and continuous medicalisation of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences… but which do not reflect illnesses so much as normal individual variation… This misses the relational context of problems and the undeniable social causation of many such problems.’

We have known for a long time that terms such as ‘schizophrenia’ are scientifically meaningless. They are not actually ‘diagnoses’ in a medical sense, since they are not based on patterns of bodily symptoms or signs. Instead, the criteria consist of a ragbag of social judgements about people’s thoughts, feelings and behaviour. The people who are so labelled may well have difficulties and be in urgent need of help, but this is not the way to help them.

In Biblical times, people were firmly convinced that disturbed or disturbing behaviour could be explained by the presence of evil spirits. No one could actually see them, but everyone knew they were there. We are equally convinced today by the explanation that extreme distress is a sign of, in effect, possession by entities such as ‘schizophrenia’. No one can detect the ‘biochemical imbalance’ or the ‘genetic vulnerability’ that would confirm its existence, but we just know that the ‘illness’ is lurking in there somewhere. Clearly, the reason people hear voices is because they have ‘schizophrenia’. And how do we know they have ‘schizophrenia’? Because they hear voices, of course!

...

‘The DSM is wrong in principle, based as it is on re-defining a whole range of understandable reactions to life circumstances as “illnesses”, which then become a target for toxic medications heavily promoted by the pharmaceutical industry….The DSM project cannot be justified, in principle or in practice. It must be abandoned so that we can find more humane and effective ways of responding to mental distress.’

...

Susannah Senerchia said...

More quotes from "Time to Abolish Psychiatric Diagnosis?" article by Lucy Johnstone:


It is important to realise how much is at stake. Psychiatric diagnosis underpins the whole biomedically-based model of mental health. Any science needs to be able to demonstrate that it is based on a reliable and valid classification system, in order to develop testable hypotheses and hence the general laws that constitute a body of scientific knowledge. If this cannot be established, the whole model breaks down and all psychiatry’s other functions – indicating treatment, carrying out research and so on – will be fundamentally undermined. In the words of Peter Breggin (1993), psychiatry would then become ‘something that is very hard to justify or defend – a medical specialty that does not treat medical illnesses.’ And, of course, numerous other personal, professional and business interests depend on the system as it is.

It is not hard to see why the debate about DSM is so heated. It is also not hard to see how fragile the foundations of psychiatric classification are. The disorders are, in effect, voted into existence, and the entire system only survives because a consensus of sufficient numbers of people is prepared to support it. As soon as we reach a tipping point where enough professionals and professional organisations are willing to join service users/survivors in admitting that the emperor has no clothes, it is at risk of collapsing in a heap.

‘Diagnosing’ someone with a devastating label such as ‘schizophrenia’ or ‘personality disorder’ is one of the most damaging things one human being can do to another. Re-defining someone’s reality for them is the most insidious and the most devastating form of power we can use. It may be done with the best of intentions, but it is wrong – scientifically, professionally, and ethically. The DSM debate presents us with a unique opportunity to put some of this right, by working with service users towards a more helpful understanding of how and why they come to experience extreme forms of emotional distress.

We already have a situation where the strongest defence of DSM is: ‘We know it’s flawed, but it’s the best we have – what could we do instead?’ The simple answer is, ‘Stop diagnosing people.’ This would at a stroke render redundant all the well-meaning but (as research shows) ineffective campaigns to reduce the stigma of ‘mental illness’.

>>

I'd like to know what psychiatrists here would say to all of this.

Athena said...

In response to Plain Anon:

"if he'd taken agency in his recovery"

Seriously?
Way to blame the patient. Here's a scenario that's not hypothetical. Mental disorders are THE leading cause of disability in the U.S. and Canada according to the NIMH. THAT's how well treatment can be expected to "help."

I agree with Suzanne. It's past time to shift the paradigm. The North American style of treatment for "severe mental illness" appears to be a dismal failure, when you look at the aggregate.

Suzanne Beachy said...

Dr. Frances just posted this blog on Psychology Today.

Joel Hassman, MD said...

Good luck telling us all that schizophrenia is a false diagnosis.

Some people are thankful, unfortunately after several attempts to accept care interventions, that somehow they, or others that care for them, persisted in finding the right combination of medication, psychological supports, community programs, and the strongest element of all, invested family and others to give such patients hope and faith their experiences in the end are just in their heads.

Frankly Ms Senerchia, the more you write here, the more you reinforce my opinion of your agenda.

It's like the antiabortion lobby, make people who are struggling commit to choices that really do not fit their real needs because others who have no real interest in the long term process tell those struggling otherwise.

Oh, but what happens after the acute time has past. "You're on your own, you have served our agenda well, sucker!" That IS what extremists and zealotry really are saying at the end of the day.

Well, I are not with those who think mental health care is useless and only damaging. Enjoy your road, I will point out the on-ramp willingly and easily!!!

Plain Anon said...

In response to Athena:

You view people as victims that are being tortured by psychiatrists. I believe that everyone has some agency, even if their choices are harmful to themselves.

And the CDC says that arthritis, back or spine problems and heart trouble are the most common disabilities in the United States. The NIMH report is in regards to Social Security claims. There is another discussion that can be had about Social Security claims.

And if you were to look at only the "aggregate", psychiatry is wildly successful.

Athena said...

"And if you were to look at only the "aggregate", psychiatry is wildly successful."

How so? By what measure?

Susannah Senerchia said...

Oh, Joel, for goodness sake. I'll work on a response to you tomorrow. In the meantime, you should work on reading comprehension and on not jumping to conclusions about people that YOU know nothing about. Good luck.

Joel Hassman, MD said...

Ms Senerchia:

You'd think after my repeated referring to you as above shows that I am not interested in dialogue like we are well known to each other, so trying to be disarming in referring to me by first name, well, just shows how the internet dumbs down the social process.

Anyway, while a trivial point, it does show to me in your repeated writings that you are not interested in real dialogue anyway, but just to ram down your opinion as basic gospel. So, referring to someone's book who echoes your point of view as pure validation, as a psychiatrist you asked to say something to what you repeat in this book, so what?

Sites like this may depend on the number of hits/comments to gain validation or justify ad time, but, it is interesting I don't get these kind of comments referred to my blog. I guess moderation up front does dissuade the antipsychiatry crowd from thinking they can get a shot in before delayed moderation can kick in. And that is what is the basis to extremism and zealotry, tell a lie or exaggerated interpretation, then repeat it ad nausea until readers who don't know better believe it, especially if not refuted strongly as soon as the misstatement is made, and then find some little mistake by the alleged protagonist and shine 1000 watt light on it to allegedly validate the erroneous premise.

Give me a break. I'll read your Saturday retort by Sunday night, but I am finished my involvement in this thread. Here's a thought to you and other dissatisfied psychiatric patients: You have some valid issues to rail on, but you don't offer anything of real substance as an alternative except eliminate psychiatry as a profession, if not all of mental health as an intervention.

Here's a couple of ideas to pursue if of interest: encourage all involved with DSM5 to not support it, be it providers not buy it, patients not allow providers to use codes for billing for treatments, even by PCPs/other nonpsychiatrists; then, patients implore your PCPs and other referral sources to psychiatrists to not refer to docs who just sell the meds only model, and especially those who do 30 minute evals/ 15 minute or less med checks, and engage with patients per template interactions; last, as a start, come into care accepting you are seeking it because you have pervasive disruptions in function and are not as healthy and interactive per others' feedback as you know you should show.

Some ideas as motivation to make mental health care better for all involved. Won't get rid of the pill seekers, but, they can end up with the pill pushers, and all involved will be happy.

For today!

Good luck readers looking for answers, not just rhetoric and personal gain!

Anonymous said...

I take two things from the discussion. First, there is so little real science in psychiatry that nothing can be resolved about Jake's story: was there overdiagnosis, underdiagnosis, too rapid treatment, too much, too little? Do any of the diagnoses have real meaning? Did his treatment help him, harm him, or neither? That lack of science is a shame, because it means that the profession can't identify and learn from its failures.

Second, while there is found here some modest cluck-clucking about Jake's treatment, it really is modest. Is anyone willing to say, stop, just stop, these broken bone-diabetes lectures to patients? Please. Even with minimal science, you can do better for your patients, with some uncertainty, some humility, greater honesty, and with less medicalization.

Anonymous said...

I agree with Anon's plea to "stop with the broken bone-diabetes lectures to patients." and his/her statement, "Even with minimal science, you can do better for your patients, with some uncertainty, some humility, greater honesty, and with less medicalization."

Yes, thank you for saying that. My first psychiatrist said that kind of crap all of the time. He would look at me sadly and say, "You have a disease just like diabetes. You will have to take medication the rest of your life. You have a chemical imbalance." He would tell me how ill I was and he basically just made everything a lot worse. He looked at me sadly and told me I was so sick that the only thing left for me was ECT. I felt completely hopeless under his care, and not surprisingly I did live up to his dire conclusions about how ill I was as he ended up hospitalizing me on multiple occasions. I don't agree with Plain Anon's assertion that we have the agency to leave. I didn't have the agency. I was drooling from being over medicated, sometimes I had fever and vomiting from being over medicated, I was so doped up I had know idea if I was coming or going so to sit and thoughtfully think, this is making me worse was impossible. It took family members who knew me to get me out from under that psychiatrist's care. I wish I could have seen what was going on, but I was young and didn't have the knowledge I have now, I was depressed, and I was medicated out of my gourd. Also, most folks don't go into a doctor's office thinking I bet this guy is going to pull one over on me, I bet he will over medicate me, and feed me a bunch of bullshit. I was a trusting person, maybe too trusting.

But, I do agree with Dr. Francis that there is good in psychiatry. I was in the I hate psychiatry camp for many years and it's only been in the past couple of years that I have softened and have been able to see that not everyone practices the way my former psychiatrist practices. My therapist, who clearly has the patience of a saint, was finally able to convince me to see another one. This psychiatrist is very straightforward. He doesn't feed me a bunch of bullshit or talk in cliches. He simply says, "I think this will help. Will you try it?" Then he talks to me about potential side effects and tells me to call him if I have any issues. None of the bullshit. None of the comparisons to diabetes. If I don't want to take something, he doesn't feed me a bunch of bull crap to try to get me to do it. He might inquire as to why, and then we talk about it. There is no arm twisting, no dire predictions, no focus on diagnosis. None of that.

I also think not everyone responds the same way to diagnosis. Plain anon wasn't bothered by the diagnosis of bipolar disorder. I would have been bothered by it and felt hopeless, because it would have affected my ability to work in the occupation I have now. We're not all the same, and it's important that psychiatrists are astute enough to recognize that. If anyone ever told me I had schizophrenia I would have ended my life. I have grown up around a family member with that diagnosis and I would given up. So, psychiatrists have to be very careful about diagnosis because not everyone can handle it, and the goal should be to help the patient not to make things worse for them.

Anonymous said...

Really? You are drooling for years and worried a dx of bipolar will affect your occupation? What exactly do you have? So sick of everyone denying their diagnosis on this thread and then bashing those that have them as hopeless. There are many thriving, successful bipolar people all around you, going for their 15 minute med checks. Of course this is after getting through the initial crisis.

Anonymous said...

I didn't say I was drooling for years. I said I was drooling from being over medicated. What do you care what diagnosis I have? What matters is that I am functional now, I'm on a whole lot less medication, and I don't have a diagnosis that keeps me from working in the occupation I am in. Not sure why you are so hostile toward my experience. It's fine if you are okay with that diagnosis, but it wouldn't be fine for me because I wouldn't be allowed to work in the occupation I work in.

Anonymous said...

Also, I never said that people with bipolar disorder couldn't be successful. I never once said that. I was telling "my" experience, and what certain diagnoses would mean to me. Just as there are people who are okay with certain diagnoses and wouldn't feel worse because of it, there are also those who would. I am in the second category.

Anonymous said...

I would be courteous to know what occupation I can't be in, please enlighten. Your description of drug trials with your doc leads me to believe you do have something more then adjustment disorder so what is it? Lets get rid of the stigm and realize that tons of people w major dx have great productive lives. If someone is ok w dx of bp and someone else is not should doc lie? What if you are actually bipolar but you doc knows not to call you that? Does that make you feel better?

Anonymous said...

I apologize if you felt that I was criticizing people with bipolar disorder. I was not. I'm not making any judgments about you. I'm simply talking about my experience and what worked and what didn't work for me. That's all.

Dinah said...


To quote Dr. Frances: Diagnosis most often helps, but sometimes hurts.

He is not anti-diagnosis. I believe, if I can speak for him, that he is anti-premature diagnosis/wrong diagnosis/poorly-delivered diagnosis.

Should I turn on our comment moderation? I don't like to close the comments off or to leave anyone feeling unheard, and unmoderated comments seem to take away from the sense that we only allow our own point of view, but I have turned on comment moderation a couple of times (in nearly 7 years of Shrink Rap) when commenters start insulting each other.

Someone asked us many comments ago to specifically address something that we have addressed many times before. Please do see the other 1,800 blog posts.

Happy Easter, everyone!

Anonymous said...

I agree, I didn't read into it that Dr. Francis was anti-diagnosis. My first experience was right in line with what he and Ms. Beachy were talking about - premature and incorrect diagnosis which lead to the wrong treatment, and over treatment, etc. I also identified with what Ms. Beachy talked about in the video about how this can suck the hope out of people. It does.

It also made me think about an experience Elyn Saks talked about where she was basically told the same thing Jake, and I, and others have been told which is to lower our expectations. A psychiatrist cannot predict what a patient will be able to accomplish in his or her life. They don't have that kind of predictive power. They should offer hope to a patient not suck it out of them.

I wish Jake's experience could have been the experience I had the second time around. The second time around I didn't get a psychiatrist who beat me about the head to accept a diagnosis, he didn't make any dire predictions about the trajectory of my life, none of that. My second psychiatrist is kind, curious, he listens, he offers help without cramming it down my throat, and is supportive in helping me achieve my goals. It makes me sad that Jake was treated the way he was treated. It's so wrong and unnecessary.