Sunday, July 27, 2008

It's Not Supposed To Work This Way



Okay, so pick your psychiatric diagnosis-- only don't pick Adjustment Disorder, or Major Depression, single episode. Pick a psychiatric diagnosis where we Know that it recurs and where long-term treatment is indicated. Let's say schizophrenia, or bipolar disorder, or recurrent major depression with a bunch of episodes. Let's say the episodes are bad and the patient gets lots of symptoms and life gets ugly.

So pick your medicine to treat Illness X. The patient takes the medicine and most of the symptoms get much better, the patient feels better, everyone takes a deep breath, the side effects are minimal or non-existent. Life is good, though the patient still has some problems (ah, don't we all....) and lives a bit on the edge in a way that leaves us wondering-- is there a personality disorder here? A developmental issue? A social issue? Or are there perhaps some residual symptoms? Maybe this is just one of those people who will never fit neatly into a boxed corporate-climbing life, or for whom meds and therapy won't be complete answers.

We're moving along okay, nothing scary is happening, the patient is mostly well, the medicine is tolerated, life is looking up. And then an episode hits---this is not "supposed" to happen. But we all know that the medicines decrease the likelihood of a recurrence of illness, while they are no guarantee.

So we take our ill patient and we do what one might do: raise the dose, assess symptoms, increase the frequency of sessions, get thee to a lab: check levels, look for other things that could account for the sudden symptom exacerbation, think about drug interactions and what's that thyroid doing anyway?

The patient returns. Ah, much better, the symptoms have abated, the patient feels better than ever. The obvious signs of illness are gone. For the sake of clarification, in psychiatry "signs" are thinks we can see-- psychomotor slowing or activation, abnormal movements, changes in the rate of speech, disordered thoughts, conversations with non-existent people...fill in the blanks. The patient is eating and sleeping better, functioning better, less irritable, less chaotic.

One little thing, Doctor: "I stopped the medicine."

Oy. So the patient stopped taking the medicine that treats the illness and gets much better. Maybe the problem wasn't a breakthrough of symptoms, maybe it was that the patient was having unrecognized side effects from the medicine and feels better without it? Nope, the symptoms were classic illness symptoms, not side effects. Why would they get "better" from the psychiatric symptoms when the med stops? I have no idea. And yes, I promise you, the patient had the symptoms before any psychotropic medication was ever started-- this isn't simply an adverse reaction to the medication. The best I can do is that the episode was self-limited and happened to end as the medication stopped, but that feels a little lame even to me.

So now what? The patient had numerous episodes of the illness before getting diagnosed and treated. But, really, you can't say to a patient: This is the gold standard of treatment for your illness, take the medicine even though you feel much better since you stopped it. Oh, I guess you could say it, but no patient will listen.

It's hard to prophylax well patients. We could try another medication on the theory that it may protect against future episodes, but if someone is feeling well, there is very little immediate up-side to prophylaxis: You feel well now and you may get side effects (oh, and you'll have to get labs and EKGs and maybe the new medicine will give you lovely adverse effects). We could do nothing and wait: it's pretty clear that it's just a matter of time and the "well" patient is a time bomb.

It's not supposed to work this way.

21 comments:

Disillusioned said...

Hmmmm - you could be writing about me here. really. That's quite scary. FWIW, I have gone back on my meds - not sure it has any discernable effect, but heck, I'll give everything my best shot cos the alternatives (being ill) are grim. I wish mental illness could be put in similar boxes to, say, a broken leg - this is the treatment and it works nearly every time and we can see it is working. But as we know, it isn't like that, it's much much messier. Add in to the mix the fact that when I am mentally unwell all the judgements about my wellness that I might have are also skewed - well, it doesn't make things any easier. So thanks for posting this, because it shows the treatment in all its messy uncertainties, and helps me to understand why sometimes I just want to give up on the meds.

Anonymous said...

Hi Dinah,

You said:

(We could do nothing and wait: it's pretty clear that it's just a matter of time and the "well" patient is a time bomb.)

Says who? With all due respect, I really think that mental health professionals are extremely wrong about this. So many people like myself who were essentially told that they needed to be on meds for life are totally blowing up that theory.

Pat Deegan, a psychologist, who was hospitalized with schizophrenia 8 times is one of them:

http://www.patdeegan.com

This link shows how people with schizophrenia without meds recovered alot faster:

http://www.moshersoteria.com/soteri.htm

The WHO first launched a study to compare outcomes in different countries in 1969, a research effort that lasted 8 years. The results were mind-boggling. At both two-year and five-year follow-ups, patients in three poor countries–India, Nigeria, and Colombia–were doing dramatically better than patients in the United States and four other developed countries. They were much more likely to be fully recovered and faring well in society–"an exceptionally good social outcome characterized these patients," the WHO researchers wrote–and only a small minority had become chronically sick. At five years, about 64 percent of the patients in poor countries were asymptomatic and functioning well. Another 12 percent were doing okay, neither fully recovered nor chronically ill, and the final 24 percent were still doing poorly. In contrast, only 18 percent of the patients in the rich countries were asymptomatic and doing well, 17 percent were in the so-so category, and nearly 65 percent had poor outcomes….the WHO researchers concluded that living in a developed nation was a "strong predictor" that a schizophrenic patient would never fully recover…..….The notion that "cultural" factors might be the reason for the difference has an obvious flaw. The poor countries in the WHO studies–India, Nigeria, and Colombia–are not culturally similar….The obvious place to look for a distinguishing variable, then, is the medical care that was provided. And here there was a clear difference. Doctors in poor countries did not keep their mad patients on neuroleptics, while doctors in rich countries did. In the poor countries only 16 percent were maintained on neuroleptics. In rich countries 61 percent were kept on such drugs.

Regarding having multiple episodes of depression which is what I had, why is everything reduced to a brain issue instead of teaching people effective coping techniques? Please understand I am not saying that everyone can come off medication but my guess is that it is alot more people than you think it is.

Also, the purpose of antidepressants was initially to not use them for more than a year at a time. Yet, somehow, depression got turned into a lifetime illness due to what I feel is a very faulty chemical imbalance theory.

Dinah, I challenge you and other mental health professionals in the field to study people like us who are blowing up your theory to pieces about needing to stay on meds. We are out there but do you have the courage to do it and go against the "norms" of your profession?

AA

Anonymous said...

Disillusioned; thanks for your input.
AA: You're right, we can't KNOW, and the patient remains off meds for the moment, but when the recent past has included a number of hospitalizations and suicide attempts, it feels like a risk to leave it all to "let's wait and see." I've had a few patients have very rough times when either they've stopped the meds or I have, falsely believing enough time had passed and it was "safe"....then again, I don't have a crystal ball.
I think with other countries the issues are more complex than medical care. Perhaps they include tolerance or even reverence of what we in the USA would deem pathology-- I really don't know enough to discuss this.

Roy said...

Sorry, Dinah, but I also have to distance myself from the "time bomb" comment. I've seen many people who do well off meds and many who do not. It is hard to know which is which. Overall, many placebo-controlled trials show an advantage (albeit, not an overwhelming advantage) to med vs no med, so most gamblers will opt for the med, but that approach only looks at the odds, not the individual.

Anonymous said...

I am glad to see Roy's comment and glad it came from a shrink and not one of us time bombs. Who can say with certainty who is not a time bomb anyway? And, who can tell me what other bombs are ticking inside of me that the drugs are responsible for setting off? Perhaps that is over and above what Roy meant but there are people like me, who prefer to think that their shrinks do not see them as time bombs and who appreciate the fact that under the right circumatances pretty much anyone can "blow". There are a lot of people who will say that they will never go off their meds and I say fine, you know what is best for yourself and if you have found that balance between symptoms and side effects or whatever your reasons may be, great i have nothing against medications in principle. I don't understand why the medical profession has such difficulty understanding why people go off meds and why it is termed non compliance. I don't want anyone to prophylax me for life and for that matter, I never knew it was a verb. On top of which, nothing I have ever taken has failed to cause wacky often scary sometimes dangerous side effects and then there is the little matter of breakthrough episodes anyhow.I take the medications, that I can tolerate to manage certain symptoms and I know that I will have to go back on the heavy duty stuff when I relapse and all I really find is that the heavy stuff, if I take it all the time, reduces the time to relapse but doesn't mean I will not have another episode so it seems a high price to pay, this constant ingestion of heavy duty drugs just to end up in the same place a little less often. The major and key thing is that I have people in place including a shrink who can see the turn in the road coming and the heavy duty stuff can be put into place pretty quickly because the alternative if I wait out the course is the hospital and, been there done that so if they catch that I am ticking then I do not necessarily have to go off. This means that I have to agree to all that but somehow knowing that everyone is saying it is only for the interim and getting it while I am still pretty rational makes it easier. I suppose fewer episodes are best but so are fewer drugs and there is a lot to be said for how episodes are managed and the type of care one receives. If the system beleives that drugs are the answer, end of story, then I guess that you would say it's not supposed to work this way but why shouldn't it work this way? It only works this way because the system pours all of its money on chemicals and psychiatrists as dipsensing units and much less on treating the patient as a whole person not just a drug ingestion unit.

phoebe said...

I guess you are thinking very pessimistically!

There was this article on cnn about 112 year old man who paints and is having his first show.He apparently has schizophrenia and is in hospitals since 1950s
I was so excited about the article that i blogged about it but my husband put a dampner by saying that somebody on antipsychotics for so many years can not be that creative!
Well, he can be pessimistic if we wants, but it is a true story!

Anonymous said...

Dinah,

Fair points but I hope you will consider this:

In my opinion and alot of people who are in similar situations regarding tapering off of meds, most psychiatrists provide a way too fast tapering schedule. As a result, withdrawal symptoms are confused as a return of the illness. People can be fine for several weeks and then get hit severely due to withdrawal symptoms.

On the Paxil Progress boards, which is run by an RN who almost lost her son due to Paxil tapering schedule that was way too fast, the recommendation is 10% of the current dose every 3 to 6 weeks for antidepressants. I am assuming for neuroleptics and anticonvulsants, the rate would be slower.

I realize this is completely foreign to the way most psychiatrists are used to doing things but I think it is something you need to evaluate.

If I had tapered my current med the way my psychiatrist wanted to, there is no doubt in my mind that I would have been back on the med. By doing it slowly, the withdrawal symptoms haven't been as bad.

Finally, I am not going to jump on you too hard for the "time bomb" remark because your previously blog entries have been very reasonable. But let's just say it wasn't the wisest choice of words. It is not all bad because language like that motivates me even more to stay med free even though I already have plenty of motivation such as not wanting to deal with horrific side effects.

AA

Anonymous said...

Okay, so I think I didn't do very well communicating this. I'm going to make up a scenario (a confabulated patient, so to speak) as a better example.

My confabulated patient came to treatment on no medications. She was hearing voices and believed she was being monitored by the neighbors. She threatened their lives and built a small explosive device. Family brought her to the hospital, but she talked her way out-- said she wasn't hearing voices anymore, denied all symptoms, would say very little but that she was under a lot of stress at work, a recent death, things were hard. She swore she would not injure a flea and she was released from the ER, no meds, a suggestion for follow-up, but she got home and refused to see a psychiatrist. The symptoms continued. Months now, voices, accusations, the neighbors got frightened, a squirrel died in a device the patient had concocted. The patient is brought again to the ER and this time is admitted psychiatrically and medications are begun. The voices stop, the neighbors are no longer conspirators, the patient feels badly about the squirrel and goes home, very much relieved to be rid of the voices and the symptoms.

She goes to treatment, she has therapy, she takes the medicines. The voices return, quieter than before, a little suspicious of the neighbors, but promises no explosives. The doc is nervous-- she's not certifiable, he raises the medication dose, orders some tests, alerts the family.

The patient returns the next week. On her own, without medical guidance, instead of raising the medicine, she has abruptly stopped it. The voices have stopped. She is calm, and reasonable. The psychiatrist is perplexed but given that she is feeling much better, he does not say "You must resume the medicine."

Why is she a "time bomb?" Well, we know that prior to taking the medications, she had multiple, severe, distressing and dangerous episodes of illness. Unless there is something we don't know about going on, she likely has a psychotic disorder and given that she was only stable for a few weeks to months (no one was talking Years here and no one was talking about a pros and cons/ risk/ benefit discussion of taking versus not taking medications.

Is there something else? Well, maybe the "episodes" were all precipitated by illegal hallucinogenic drugs-- (oh, but the ER doc did order a drug screen, so this actually isn't the case). But if that was the case, and the patient stopped using those drugs that precipitated the psychosis, then she's not a time bomb for recurrence.

Given the repeated episodes and the short period of time being well, my hunch is this patient will sooner or later have another episode of psychosis. It may not be as dangerous an episode, the psychosis may take a different form.

I'm not saying the patient has to go back on the meds immediately, or that I can predict the future, I'm just saying that some scenarios feel explosive and make me watch a little more closely.

Sorry if I confused anyone...

Anonymous said...

everyone you know is a time bomb. that is the way life does work. therefore, why use that language to stigmatize patients in particular?no one else is confused.

Roy said...

Oy. More damage control (he said with a wincing smirk). For me, the issue that I find objectionable is the, umm, dehumanization that comes with equating someone with a time bomb. Maybe I'm picking a nit here, but it comes down to the difference between a simile and a metaphor.

Simile: "She was a ticking time bomb."
Metaphor: "She was like a ticking time bomb."

It may seem like a small point, but if you are the subject of such a discussion, it is very important. I don't want to be called a "dispensing machine"; it takes away my humanity. When we psychiatrists do this to people with mental illness ("the schizophrenic", "the addict", whatever), it takes away the individuality and gives the illness more control.

Is this just Roy-gone-PC? No, we all make these comments, myself included. But I try not to. I work at being sensitive to what it is like to walk in someone else's shoes. I'm not saying Dinah does not, as I know she does (as AA pointed out).

But hidden somewhere in this discussion is the notion that the psychiatrist is somehow responsible (in a medicolegal way) for the consequences of someone's mental illness, via its management or lack thereof. Our society has often placed us in this role, and it is not one I enjoy or desire.

Anonymous said...

So I'm going to plead ignorant here and apologize. I didn't realize that it was stigmatizing to refer to a person who might become dangerous or explosive due to their illness as a ticking bomb. Yes, in a way, everyone is a ticking bomb, but as Roy pointed out, I don't actually feel I have a role in 'anyone's' behavior. I do feel some responsibility here: if I don't encourage this patient to resume A medication and something awful happens during an episode, I will feel badly, and others will say "How could you have not seen that coming?"

It's a term that's used for many things, not specifically for those with mental illness (eg, people who repeatedly become violent when they lose their temper are often thought of as ticking bombs with no particular association to mental illness).

Since I don't associate the term particularly with mental illness (as opposed to something like crazy or lunatic), I didn't realize it would be found offensive.
D

Alison Cummins said...

Simile: "She was a ticking time bomb."
Metaphor: "She was like a ticking time bomb."

Almost right, except exactly the opposite.

http://en.wikipedia.org/wiki/Stylistic_device

Anonymous said...

Yeah, I hate that whole life thing where things don't work how I presume they're supposed to.

Roy said...

Oops, I switched them. Thanks, Allison.

Midwife with a Knife said...

Personally, I think some people took this a little too personally....

But anyway, I think that the obvious approach is simply a frank conversation between the psychiatrist and the patient about the risk/benefit ratio of the medicine, emphasizing the risk to the patient, her relationships, and potentially her life-trajectory of untreated/uncontrolled mental illness.

This is a situation where "evidenced based medicine" completely breaks down though, because all evidence based medicine gives us is statistics. A 50% reduction in relapse rate or whatever... but people are not statistics. The patient will either have an improvement in her symptoms/reduction of relapse/ side effects, or she will not. We don't treat statistics, we treat people, who are all genetically and biochemically unique. We're still in the "if the only tool you have is a hammer..." era of medicine.

Doc said...

"But hidden somewhere in this discussion is the notion that the psychiatrist is somehow responsible (in a medicolegal way) for the consequences of someone's mental illness, via its management or lack thereof. Our society has often placed us in this role, and it is not one I enjoy or desire."

Amen, Roy. While there are many external medicolegal forces and societal expectations to blame, I think we are also guilty of placing ourselves in that position at times, and that is one reason why we worry about "time bombs." Our quest for perfect outcomes creates a win vs. lose mentality, with very little middle ground, and thus very little comfort for patients like Ms. Confabulated.

Therapy Patient said...

I am also in the group of folks who used to be on anti-psychotics but no longer am. I do NOT take the posting especially personally, but think I have some insight that those who have not taken the meds do not have.

Thank GOD my current psychiatrist encouraged me to go off the medications 2+ years ago. There were some physical side effects while on, but the WORST effect was the feeling that I had lost what makes me HUMAN. I was emotionless, non-creative, and had little sense of humor. Life was a flat line. It was like being Dr. Spock but without the weird ears. I was able to put in a good day's work doing non-creative things, keep house, interact, but I was without soul, without joy. It was hollow, empty. My 10-minute-prescribing psychiatrist said I would have to be on meds for life. The psychologist I went to refused to discuss anything with me except "accepting my diagnosis" and "accepting a life in which I would need to not stress myself", and to work part time only.

What a difference to go to a psychiatrist who listened to me (about all my issues which neither of the other 2 would), encouraged me to go off meds (which I did VERY VERY slowly...slower than what was printed online as taper schedule). My doc is still convinced that my hospitalization was a one time episode brought on by extraordinary events. He encouraged me to get back into life, do what I love to do, and not be afraid of another breakdown. So far he's been right and I think he IS right.

The other thing I know is that Abilify works in my body in less that 1/2 hour. If I am agitated I can take it and within 15 minutes I feel calm (though the side effect of a day or 2 on Abilify is a week+ without feelings). As my doc says "No need to have the medicine any closer to my body than the medicine cabinet", because it is so fast acting.

I can empathize with how perplexed you must be by what happened with your patient. Perhaps some day more will be known about these drugs and what they do to people.

Therapy Patient said...

Forgot one important point:

Anti-psychotics also made me "stupid". When I was in 4th grade the city of Buffalo assembled a single class of the most gifted students so that we could have a 4 year enriched program and I was one of those students. I did not learn "good study habits" until graduate school because I was able to get A's and B's with a quick last-minute cram of my notes.

Being on anti-psychotics dropped my IQ significantly. My husband kidded me that finally I would understand what it is like to have "normal intelligence". I also lost one of my brain's greatest strengths which is the ability to connect many different pieces of data from all different areas to come up with something new. I have wondered exactly what aspect of my brain was altered, and think that perhaps 2 areas of cognition were affected: short term memory, and something that must be the equivalent of "ram" on a computer - working memory. One of the things that makes me unique is my ability to hold a lot on working memory and that was gone.

I would rather have another psychotic break than to live with such a diminished life. Thank heavens I found such an amazing psychiatrist.

Encefalus said...

A very interesting article. It's good to see a psychiatrist commenting on the proper use of meds, instead of just supporting them. I have written a few things myself (and I linked to your page) if you wish to see at http://encefalus.com/sociopolitical/psychiatry-antipsychiatry-history-mental-disease/

Anonymous said...

Like AA & the confabulated patient I went off all medication and got better. I was told I would have to take meds for the rest of my life which really just made me feel more hopeless & depressed. I've been off all meds (successfully) for 6 years - something I was told was not possible.

Anonymous said...

Roy Said:

"I don't want to be called a "dispensing machine"; it takes away my humanity."

Psychiatrists are not human, they are underdogs, the scum of earth.

So it's perfectly okay for you to remove your patient's humanity by calling them "mentally defunct" and abusing their human rights.

But we should not call you dispensing machines ?

A machine would be more respectable than you.

You are monsters, you are not human. Incapable of caring and concerned only with controlling others and using force if necessary.