As noted in Anatomy of an Epidemic, the rationale for promoting long-term treatment with neuroleptics for people who have been diagnosed with schizophrenia was based on the results of the relapse studies. In these studies, people who had been treated with neuroleptics during the acute phase of their illness were randomized to continue on either medications or placebo. In most studies, they were then followed for 1-2 years. The relapse rate in the group who was not on medication was much higher.
However, there is more to this story. To summarize the findings of a large meta-analysis (Gilbert, P, et al. Arch Gen Psych. 1995;52:173-188):
16% of individuals relapsed despite being on medications.
47% of people who are not taking medications do not relapse.
Therefore, maintenance medications reduced relapse rate in less than 40% of  people.
In an accompanying commentary, Ross Baldessarini suggested that in some people relapse was due to the abrupt discontinuation of medications and more people would have done well if the dose reduction had been gradual (Arch Gen Psych. 1995; 52:189 – 191). If this is true, the percentage of people who are deriving benefit from remaining on medications is probably even lower. It is difficult, however, to determine who these individuals are.
As I re-consider this problem, I have a clearer recognition of how expectations influence  clinical decision making. The bias for those who have confidence in the overall efficacy of medications is to believe that when someone does well it is the result of the medication and when someone does not do well it is the result of the underlying illness. A patient of mine is extremely distressed by her voices which she hears continuously.   Periodically, she gets so annoyed by them that she shouts out loud in response to their taunting.  I reduced the dose of medications to try to minimize side effects. The next time she had a bad day of shouting at her voices both she and the people who live with her were convinced that it was the dose reduction that had caused this episode. It was the belief that medications are helpful that led this patient and her support system to conclude that it was the dose reduction that had caused the shouting episode even though she had these episodes at regular intervals before the change was made.
Many years ago, I conducted a small study of people who were admitted to a hospital because they had experienced an increase in psychotic symptoms. The people in the study had all been taking neuroleptics prior to the hospital admission. The common practice was to increase the dose of these medications. Most people improved and would be discharged on a higher dose of medication. The assumption was that they got better because of the medication change. In this double-blind study, some people received an increased dose of medications and others remained on the same dose they had been taking prior to admission. We found that at 10 days, most people  felt better regardless of whether or not their dose was increased (Steingard S, et al. Journal of Clinical Psychiatry 1994; 55 :90 470-472.). This small study suggested that the common practice of increasing the dose of medication was not necessary. It also demonstrates how one’s bias can lead one to form an incorrect conclusion.
At the same time, however, I would posit that those who do not believe that medications are of benefit have their biases as well. When they encounter someone who is taking medications and is not doing well, this is assumed to be the result of the medications. When they meet someone who is on medications and doing well, I suspect they tend to believe they are doing well despite their use of medications. My point is that in any given individual it is hard to be sure what the impact of the medication is and we tend to provide explanations that fit our frame of reference.
Although for many years I have practiced with the knowledge that it is important to minimize exposure to neuroleptic medications, I still do not know who among my patients will be most successful in tapering medications. My current plan is to systematically track and record my experiences.  I am hoping that by doing this, I will be less likely to be influenced by the dramatic events that might tend to have a disproportionate impact on my thinking (the person who comes off medications completely and does well or the person who gets much more distressed after having done well for many years). I hope that I can collect enough data to be able to make a contribution to our understanding of neuroleptic taper.
Sandra—Could you explain more about what it means to you for a patient to, “do well” vs. “not do well”. This may seem like a rhetorical question, but experience has shown me that these definitions are neither objective, nor static. What looks like progress to a doctor or family member, might be and feel very harmful to the patient.
With this in mind, it’s important to note two things. First, symptoms can be looked at from many different angles. What is often understood as a symptom that needs a cure can also be understood as a creative expression of internal conflict. Much more could be written about this topic, but for this note, I would just like to introduce the idea that crisis is inherently creative. If the patient is properly supported, with low doses of or no doses of medications, he or she might have an opportunity to emerge with a stronger, more integrated sense of themselves. Patients need time, and the support of people who are willing to suspend disbelief in their experience. We are often labeled too quickly.
Second, it’s difficult to say for sure what recovery actually looks like. In my experience as a patient, peoples’ perceptions of my recovery rarely matched my own. For example, I was medicated for 15 years, during which time, my drowsiness and zombie-like state were noted as improvement, as I was no longer actively harming myself.
So although I wasn’t superficially cutting myself anymore, taking heavy doses of medications every day was very harmful to me. Ultimately these drugs damaged my kidneys and liver, reduced congitive function and my ability to digest vital nutrients, my hair fell out and I lived in a state of extreme fatigue and dissociation, etc. etc. So, although I was no longer consciously opting to cause myself harm (which was superficial to begin with), harm was happening in spades. My body broke down. I think the actualy “benefit” is that people didn’t have to see the harm that these medications did to me. Unlike superficial cuts, most of the damage was done on a very deep level, internally. This is a heavy price to pay for failing to admit the role our own fears play in the mistreatment of mental difference and its manifestations.
Today I am medication free. Coming off of these medictaions took several years. That’s when the healing began! With the help of peer support networks, therapy, yoga and dietary changes, I am accomplishing more than any doctor or I thought would be possible for me.
–Vanessa
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Vanessa – Thank you for your comments. I agree that the term “doing well” is vague and can only be defined in an individual way. This is one of the limitations of the studies where improvement needs to be defined for a group rather than an individual. My role as a physician is to provide my patient with the information I have and then to make a decision with a person based on her personal values. One problem is that the data we have has been distorted by the influence of pharmaceutical advertising (see the posts on the J& J settlement) and it is our obligation to demand that studies are conducted and reported in a more rigorous manner.
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Sandra,
I neither support nor totally reject the use of pharmaceutical drugs. However, I truly believe that literally ANYTHING will work towards your recovery, if you believe it will. It could be that this very resolve overcomes any negative effects of the medication: what doesn’t kill you makes you ctronger, as Nietzche says. I believe in homeostasis: whatever toxic concoction, thetefore, you introduce into the body or brain, it will start attempting to redress the imbalance. Possibly the best analogy is the gaviscon syndrome, though it could equally apply to anti-inflammatories, anti-depressants and antipsychotics.
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Sandra- Thank you for this. I appreciate that, as a health care provider, you are put in the difficult position of having to weed through and interpret inaccurate information about the action and effectiveness of these medications. I am impressed and inspired by your willingness to address this problem in a public forum. Thank you, and I look forward to hearing more from you. –Vanessa
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Thank you for your comments. I am not sure that “medication” is a term that should be restricted to the use for conditions that have a “scientifically proven biological cause”. There are numerous other ailments for which effective treatments have been found in which the pathophysiology remains unknown. For instance many types of head-ache are well controlled with analgesics.
I continue to believe in empiricism and the need to develop a solid foundation for understanding not only if but also why various treatments are or are not effective. Also, as noted in an earlier blog, I view all treatments as essentially both biological and psychological and I believe all treatments require rigorous scrutiny.
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We have many areas of agreement. If you want to read more about why it is not such a great idea to rely on drug reps for training and education, please see Marcia Angell’s “The Truth about the Drug Companies.” It might send you back to your shock and horror phase but it is a very important book.
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I am not following this argument. How am I discounting evidenced based medicine? Also, you seem to be arguing with me on something with which we do not disagree. Perhaps, I am not being clear but I share your outrage over the influence of pharma on the practice of medicine. The point of my blog and my current clinical practice is to try to tease apart what is evidenced based and to try to practice in an ethical manner.
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Dr. David Healy, Psychiatrist, has his own blog and his latest article focues on the fact that ALL so called medications are POISONS though they are not allowed to call them by that name. His point is that all such meds cause side effects with some far more harmful than others. All of psychiatry’s POISONS have been shown to be NOTHING but brain/body destroying poisons that may temporarily suppress unwanted behaviors, but poison the victim while causing worse symptoms in the long run. Thus, the arugument of the mental death profession that the benefits outweigh their deadly effects is evil and self serving.
The only reason they have gotten away with it is because since their evil rise to power with bogus eugenics and other psychopathic “theories,” they hav succeeded in making some groups appear subhuman and deserving of psychiatric/psychopathic control, rape and murder in the guise of medicine which also was handy in eliminating unwanted wives, relatives and political dissidents. Again, psychiatry has nothing to do with mental or other health, but is just an evil ploy to rob those in petend democracies of all their human, civil and other rights.
I’ll bet “Dr.” Steinberg preys on many of her fellow women as is nicely described in Dr. Phyllis Chesler’s WOMAN’S INHUMANITY TO WOMEN and other books that explore the myth of the great liberated sisterhood. Women are also most inclined to bully other women at work and other public arenas as exposed by bully experts like Tim Fields in BULLLYONLINE and Dr. Gary Naime in his books and web site.
Again, Dr. Steinberg can try to delude herself and others that she is “helping” people, but she is only helping herself while destroying anyone who makes the fatal error of seeing her as Dr. Peter Breggin warns in his great book, TOXIC PSYCHIATRY.
I know I sounds extreme, but years of research and personal encounters with the mental death profession with loved ones prove that the only thing that will save it and their victims is to abolish it since “absolute power has corrupted them absolutely!”
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Are you also going to include recent studies that proved electroshock or ECTcauses brain damage, so that it too should be considered as one of the “poisons” rather than “medications” or “cures” typical of the history of mad doctoring as Mr. Whitaker describes in his great book, MAD IN AMERICA as one of many of their barbaric practices still being forced on vulnerable people today.
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