Since I spoke at NAMI’s national convention last month, the writer Pete Earley has invited people who listened to my talk to send him their reports of the event. Earley wrote a book titled Crazy, which was both about his son’s struggles with mental illness and the criminalization of the mentally ill, and in his book and other writings, he has told of his frustration with laws that prevented his son from being forcibly medicated. Yesterday, on his website, he published a letter from a mom who attended my talk with her adult son, and she told of how, after returning from the meeting, her son apparently abruptly stopped taking his medication and has now gone missing.
In her letter to Earley, she blamed both me and NAMI (for inviting me) for this bad turn in her son’s life. “In my heart, I wish I could hold [Whitaker] and NAMI legally responsible for what is happening. They gave an alcoholic a bottle of whiskey for Christmas and asked him to join in a toast . . . I damn them (NAMI and me) and if my son ends up dead, I believe his blood should be on their hands.”
Earley then put this headline on her letter: “Mother Condemns NAMI and Whitaker: Blood on Their Hands.”
That is quite the letter and quite the headline. To accuse someone of having “blood on their hands” is to accuse them of something akin to murder. It is a headline asserting that I now bear culpability for whatever bad may happen to this unnamed son. This is now my fault, and NAMI’s. Many readers wrote in to express their support for the mother, and how irresponsible it was for NAMI to have invited me.
I, of course, can only hope and pray that harm does not come to this mother’s adult son. But, as I thought about this letter today, and Mr. Earley’s headline, I saw this reason to publicly respond: Who has really failed her son?
Here is the framework for thinking about that question. Should we, as a society, discuss what science tells us about psychiatric medications, or should we, for some reason, keep that discussion from public view? That may seem like a rhetorical question, but, in fact, much of the science that would lead society to question the merits of antipsychotics has in fact been kept from society in the past, and in essence, Earley, with this headline, is urging that to remain the case. The general idea is that discussing such information, particularly in the presence of people who take antipsychotics, is dangerous, because it can lead people to decide to stop taking the drugs, which in turn can lead to a bad outcome.
But here is the other side of this “culpability” question: If we, as a society, had discussed such information in the past, would we now have treatment protocols that provided this man—if he had wanted to stop taking medication—support for doing so in a gradual manner, with his reactions to that tapering program carefully monitored? If that is the case, then what is irresponsible is to avoid discussing the science in the first place, because we then fail to provide an opportunity for someone who wants to taper from the medications to do so in a manner that minimizes the risk and maximizes the likelihood of a good outcome. The lack of discussion leaves the individual isolated and alone as he/she tries to think about what to do.
My presentation at NAMI was titled “A Case for Selective Use of Antipsychotics.” You can see in the title the point of my presentation: It is stating that science is telling us that the best use of these drugs would involve using them in a selective manner (i.e. in a way that sorts out who benefits from them and who can do okay without them.) It is an argument for amending our current drug-use protocols, which emphasize continual drug maintenance for all patients with a diagnosis for a psychotic disorder. Instead, we would use them in a way that science tells us could markedly improve recovery rates.
You can see my NAMI slides here. Readers can see that basically what I do in the presentation is this: I review the extensive evidence, stretching across fifty years of research, that supports two conclusions. The first is that there is a significant percentage of first-episode patients who, if they were provided with psychosocial care (and possibly made use of benzodiazepines for sleep purposes), could recover from a psychotic episode without being exposed to antipsychotics, and that this group could then be expected to have favorable long-term outcomes. The second is that there is a significant percentage of patients who, after being stabilized on antipsychotics, could then successfully withdraw from the drugs and do fairly well off them long term. However, that still leaves a place for prescribing the drugs: They could be used to help some patients recover from an initial episode, and they could be continually prescribed to those patients who can’t seem to do well off them.
As readers can see from the slides, I didn’t speak about the many adverse effects of antipsychotics, or how they have been found to cause a reduction in brain volumes over time. I focused instead on the abundant evidence that a selective-use protocol could lead to better overall outcomes, and higher recovery rates.
Now it is noteworthy that shortly after I spoke at NAMI, Lex Wunderink published his study showing that at the end of seven years, first-episode patients who had been stabilized on antipsychotics and were then randomized to a treatment arm that involved “guided discontinuation/reduction” of antipsychotics had much higher recovery rates at the end of seven years than those maintained on antipsychotics at a standard dose. Wunderink’s article in JAMA Psychiatry was accompanied by an editorial, written by Patrick McGorry, stating that it was time for psychiatry to rethink its use of psychiatric medications, with the expectation that they would be used more selectively, “now that we are armed with stronger evidence to counter poor practice.”
In essence, the editorial endorsed the very conclusion I made in my presentation at NAMI.
The public is often surprised to hear of research that tells of people diagnosed with a psychotic disorder who are doing well without medication, and there is a reason for that. Such information has been kept from the public (and to a large degree, out of psychiatric textbooks.) When Martin Harrow published his findings that schizophrenia patients who had stopped taking antipsychotic medication had much higher recovery rates over the long term than those who stayed on antipsychotics, the American Psychiatric Association didn’t publicize his results and neither did the NIMH. As a result, no newspaper reported on this startling outcome, even though we can be sure that if the results had been the reverse, the APA, the NIMH, and the manufacturers of antipsychotics would have trumpeted this finding to the media.
I should also note that NAMI, having invited me to speak, arranged for a followup session where people who used the medications could talk about what they had heard, and my understanding is that many at that meeting spoke of how they felt that antipsychotics helped them. So NAMI, having invited me to speak, provided people with a way to think about such information, without seeing it as a prescription for guiding anyone’s individual care. I don’t see how the organization could have handled my appearance in a more responsible manner.
I am now thinking about the mother’s adult son. I do believe that we, as a society, failed him. And I say that—that as a society we failed him—because psychiatry is an institution that is part of our society, and for the past 50 years, psychiatry has not communicated research results that question the merits of psychiatric drugs freely to the public. Furthermore, the public has not insisted that psychiatry freely discuss such information. You can see that impulse to suppress such information on display here: Pete Earley, with this headline, is saying that it was grossly irresponsible of me to have presented such research findings in that forum. I have “blood on my hands.”
What has been the result of that suppression of information? We, as a society, have not developed a system of care that provides support to someone who might want to taper from his medications, and help that person try to do so in a safe manner, even though we know that it can lead to a good outcome for many. And the absence of such support may put a person—such as this mother’s adult son—into a perilous place when they do, in fact, learn of such information.
In 1976, Jonathan Cole, who had been the head of the NIMH’s Psychopharmacology Service Center for many years, and who had personally conducted some of the early seminal research on antipsychotics, co-authored an article titled: “Maintenance antipsychotic therapy: is the cure worse than the disease?” He then made this plea:
“The major principle we wish to stress is that every chronic schizophrenic outpatient maintained on antipsychotic medications should have the benefits of an adequate trial without drugs.” Cole concluded, after his review of the scientific literature, that “the proportion of such patients” that could do okay without antipsychotics “may be as high as 50%.”
His voice was not heard then. And now here we are, 37 years later, and still we, as a society, are still struggling to hear such thoughts.
Update: In a post on Tuesday, July 23, Pete Earley reported that the woman’s son had gone to a homeless shelter, and agreed to be hospitalized. Earley also wrote that, writing as a journalist, he believed there should be discussion of research results.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.