The recent study by Sohler and colleagues, “Weighing the Evidence for Harm from Long-Term Treatment with Antipsychotic Medications,” was met with much fanfare on MIA. I shared with others an appreciation that researchers had approached one of the key questions raised by Robert Whitaker in Anatomy of an Epidemic in a serious and thoughtful manner. Over the past five years, I have tried to engage with colleagues to discuss the implications of this book and many of them responded by dismissing the ideas of Anatomy out of hand, accusing Whitaker of “cherry-picking.” I was left wondering, if he picked the cherries, can someone point me towards the branches and the tree?
This study is an attempt to review the data in a comprehensive way. The authors conducted a rigorous literature search for studies that would allow them to address this hypothesis: “Long-term treatment with antipsychotic medications is less beneficial than no antipsychotic medication treatment for patients with schizophrenia.”
They set out a plan to search for studies with pre-specified inclusion criteria that the authors determined would allow a test of this hypothesis and they established a priori a rubric for evaluating the results. They assigned each member of the team to review a portion of the 239 abstracts that they found on their initial broad literature search. They identified 40 studies that met the initial criteria and a different reviewer was then assigned to determine if the outcome measures and comparison groups in each study allowed for inclusion in the final group. They ended up with 18 studies that were the basis for the paper. Of these, four of them had been included in Anatomy of an Epidemic.
The MIA reports emphasized that the authors conceded that their data “failed to determine whether long-term antipsychotic medication treatment results in greater benefits than harm.” However, this was not the main objective of the study. The authors were looking for evidence that long-term exposure is worse than no drug at all. The authors conclude that there is not sufficient evidence to draw this conclusion. Basically, the data is just not definitive due to poor study design. What the authors suggest is that the field was so convinced that long-term medications were necessary that studies comparing long-term drug vs. no drug were deemed unethical.
Many commenters on this site wondered if this would be the final blow to one of the strongest clinical recommendations in psychiatry. Whitaker’s own headline (“Timberrr”) suggested this was long overdue. I remain skeptical that profound change is underway.
One can read this study to fit in to one’s own narrative. Just as many on MIA focused on the lack of data supporting long-term use of the drugs, those who accused Whitaker of cherry-picking might see confirmation of their position given that a number of studies were cited that were not included in Anatomy and, in the authors’ opinion, do not support his hypothesis. A cursory reading of the article could lend support to both the pro- and anti- Whitaker camps.
I will address one of my concerns with this study and then offer my own reflections on why the recommendation for long-term use of neuroleptic drugs continues to have a strong foothold in psychiatric practice.
In this report, they determined that 11 of the 18 studies had either mixed results or were supportive of Whitaker’s hypothesis (rated “mixed” or “yes” in their paper). I am not familiar with all of the 7 studies whose results were found to not support the hypothesis (rated “no” in the paper) but I do know one of them and I was surprised to see it listed this way. This was the Northwick Park study. The researchers in that study identified 120 people experiencing a first episode of psychosis that was “not equivocally affective” (meaning not clearly meeting the diagnostic criteria for either mania or depression – a distinction thought to be important in psychiatric circles). They were admitted into the study when clinically stable (anywhere from 2-72 weeks after hospital admission and initiation of drug) and then continued on an anti-psychotic drug for another 30 days. In a double-blind randomized fashion, one group continued on drug while the other had their dose reduced by 50% for 4 weeks at which point the drug was discontinued. They were then followed for two more years.
The researchers published two papers. The first, published in 1986 and cited in Sohler’s paper, points to the higher rate of relapse in the group who stopped the drug. However, they published a second paper in 1990 which was not included in the recent report. In this study, they evaluated occupational outcomes and they found that among those who had come into treatment within a year of developing psychosis, the occupational outcome was much better in the group who had been assigned to placebo. This was despite the fact that the placebo group experienced a higher rate of relapse. The authors wrote, “It suggests the disquieting conclusion that the benefits of active neuroleptics in reducing relapse may exact a price in occupational terms.” [Note: I am using “psychosis” as a term to encompass what is also referred to as “extreme states” or “altered states.” I am not implying anything about etiology. It is just a label. I am speaking from the perspective of a psychiatrist so I am choosing to use the psychiatric lexicon.]
In my view, this paper would be at the very least in the mixed category shifting the count to 12 mixed/yes (supporting Whitaker) and 6 no. I do not read this as a significant blow to Whitaker’s hypothesis. I always read it as just that – a hypothesis. A call to question the accepted orthodoxy of our field. But while I celebrate the recognition that someone I respect is receiving with this paper, I continue to struggle with implementing the implications of Whitaker’s hypothesis into my daily work.
It has been hard for me to fully grasp – and I doubt I am alone in this — that reduction of relapse is not synonymous with optimal outcome. The notion that people may overall fare better in their lives despite having one or multiple encounters with psychosis would never have been self-evident to me. It is an odd thing that in many places I doubt I would ever be asked to explain this statement. But at MIA, it requires elaboration.
This brings me to another tough topic (again, on MIA but not elsewhere) and that is the difficulty a person can have in navigating the world in a psychotic state and—to be blunt—how difficult it can be for those around him. This is my biggest challenge as a clinician. I am trying to incorporate into my working life the many ideas I have learned here and from cherished colleagues around the world who are promoting different paradigms of understanding. But in my world, it seems that psychosis is tough. It is not infrequently scary. I can not speak from the perspective of those of you with lived experience. I am speaking from the perspective of one on the outside. One who tries to engage. One who answers the phone to speak to worried, frightened, demoralized, exhausted parents and loved ones. One who hears from friends who feel that they have been completely shut out of their friend’s life for no apparent reason. One who meets with the police and a confused person who has created a disturbance in the community. One who meets with individuals tormented by their experiences who are hoping for some sort of relief.
I have had the great privilege of learning about different ways of “being with.” Soteria, Open Dialogue, Intentional Peer Support while all being extremely valuable are not helpful for everyone. To some extent, every so-called alternative program of which I am aware is self-selective to some degree. By this I mean that those who are involved in these programs admit to having their own limits. Some of them by design only work with people who come to them. Others chose carefully who can participate. This is not intended as a form of denigration. I find much value in these programs. But one of the biggest challenges I continue to encounter are the individuals who are struggling in profound ways but who do not want anything from any of us, be it alternative or mainstream. While my failure to find ways to engage collaboratively with some of these individuals is undoubtedly due to my limited resources as a clinician and human being, I am not alone in these limitations.
While we might point to the power and influence of the pharmaceutical industry in pushing the drugs-forever narrative (and it does!), I continue to think there is more to it. The fear of psychosis, the exhaustion it can bring to everyone, the worry that a loved one’s life might get derailed in a way that is often destructive – these concerns also drive the narrative. In many instances, it is this fear, as much as any meta-analysis on the long-term risks of relapse, that leads to treatment recommendations.
I find that in my more traditional circles, there is often a lack of tolerance for people’s self-determination, especially when a person is following a less traveled and understood path. But in the MIA circle, I sometimes find a lack of tolerance for people who express these fears and worries. I have this notion – perhaps naive – that if both sides could acknowledge the validity of each others concerns, we might be able to move forward. Maybe if we could do this, then when trees fall in that forest, more than a few us us will be able to hear them.
