I have spent 30 years as a psychiatrist treating people who are psychotic. Almost every day I meet with individuals who hear voices that no one else hears, are sure the TV or radio is talking to them or have such confused thinking that it is hard to understand what they are trying to tell me.
Sometimes these patients lead quiet lives. But not uncommonly these voices get them into trouble. I have had patients who call the police repeatedly, demanding that they stop bugging their phone. And others who stay up all night talking back at the voices. Some accuse family members of being involved in the torment.
In many cases, this is a frightening experience — for the people I see and those who love them. And the labels we use — “schizophrenia”, “bipolar disorder”, “psychosis” — only crudely capture these experiences.
About 60 years ago, a group of drugs was discovered that appeared to quiet the voices, improve the clarity of thought and lessen the preoccupation with delusion beliefs. Originally called major tranquillisers and later renamed antipsychotic drugs, these have been considered essential for the treatment of people with schizophrenia.
Once it was clear that these drugs were helpful in the short term, questions arose over how long people should remain on them. Studies done in the 1970s and 1980s looked at people who were stabilised after being treated with antipsychotic drugs for several months and then followed them for up to two years. Some continued on the drugs, while others stopped taking them. The relapse rate was much higher in the group that stopped the medications. Based on these studies, treatment guidelines now state that people should stay on anti-psychotics indefinitely.
The problem with “indefinitely” is that antipsychotic drugs have many troubling side-effects. They can cause muscle stiffness, tremor and something called tardive dyskinesia, where muscles in the face or limbs move uncontrollably. But the belief — my belief — was that this was the unfortunate price paid to help people who were suffering.
Many people do not want to take these drugs because of the side-effects or because they do not think of themselves as ill. After all, if the government is using telemetry to transmit messages into your brain, the solution is to turn off the source of the transmission, not to take a pill. I considered myself a successful psychiatrist when I was able to use my powers of persuasion to convince a reluctant patient to stay on the drugs.
Yet, over the past 15 years, my attitude has shifted. I have become deeply disturbed by the marketing practices that many pharmaceutical companies began to use in the 1990s to push their new medications.
Like many of my colleagues, I awaited the new drugs with enthusiasm, hoping that they would have fewer terrible side-effects. Leading psychiatrists who had worked on the development of the drugs also said that they not only were less likely to cause neurological problems but also were more effective.
Quickly, though, I started to think that their benefits were being inflated and their side-effects minimised. With one drug in particular, it was clear after a year that my patients were gaining weight at alarming rates: 20 (9 kilograms), 30 (14 kilograms), even 100 pounds (45 kilograms) in a matter of months, a real threat to their health.
Researchers test such new drugs on people for years before they reached the market, but little attention was focused on this issue and only then in the context of a product war — ie, whether one drug caused more weight gain than others. Only a decade after they were released to the market was it widely acknowledged that severe weight gain was common with many of the newer anti-psychotics, increasing the risk of diabetes. Given that people may take these drugs for decades, the health consequences are serious.
Yet until two and a half years ago, I still thought that prescribing antipsychotic drugs was necessary. After all, a good number of my patients ended up in the hospital or, worse, the police station, when they stopped taking their medications. I did not think I had any other option than to continue to employ my now well-honed powers of persuasion to convince them to stay on their drugs.
And then I read Robert Whitaker’s “Anatomy of an Epidemic”, in which he wondered why, if these new drugs were so great, we were seeing increasing numbers of people on disability for psychiatric conditions. He looked at the studies of long-term outcomes, and what he found surprised me and many of my colleagues: Although it is very hard to do a definitive study that follows people for many years, the research suggested that, over time, the people who remain on these drugs do worse than those who stop using them.
Those who remained on the drug were less likely to return to work or develop meaningful relationships. Of equal concern, it appeared that brain shrinkage — thought initially to be due to the illness itself — was in fact caused by the drugs. Even when monkeys took these drugs for a period of months, their brains shrank.
If Whitaker was right, everything I had been doing for 20 years was wrong. Many psychiatrists have accused him of cherry-picking the data or distorting the findings of the studies. I have spent much of my time rereading the articles and studies he cites, looking for others, talking to colleagues and reading as much criticism of his work as I can find.
And what I concluded is that Whitaker is probably right.
This created a dilemma for me: If the drugs that are helpful in the short run may be harmful over time, what do I do for the person who is unable to have a conversation because the voices in his head are so loud?
If the medications stop the voices, do I suggest he come off the drugs and risk relapse? Or do I suggest he stay on them and reduce his chances for a full recovery? If I suggest that he stop the drugs and then something bad happens, I may be blamed for his relapse, while I am unlikely to be blamed 30 years from now when he has diabetes.
Doctors are held to a standard of “accepted community practice”. What if my own research has led me to a conclusion that is at odds with accepted community practice? What if accepted community practice is so distorted by pharmaceutical advertising in favour of these drugs that it is suspect and unreliable?
Two years ago, I decided to invite my patients into this conversation. I explain to them what I have read and what conclusions I have drawn, as well as the conflicting views of other psychiatrists.
I have been monitoring those who have chosen to wean themselves from the antipsychotic drugs they have been taking, in some cases for 20 years or more. What has been most striking is that my patients make careful and deliberate decisions. Many psychiatrists fear that having this conversation will lead to massive dropping of the drugs, but this has not been my experience. Some do — most often, the ones who have stopped them multiple times in the past — but most are cautious. Of the 64 people I have tracked, 40 decided to try a dose reduction, 22 chose not to alter their dose and only four abruptly stopped taking their medications.
Some might think my approach is cavalier. When we read about Aaron Alexis, who heard voices and shot 12 people before being killed at the Washington Navy Yard, it raises our fears. However, it is important to keep in mind that the problems I describe are common and that the vast majority of people who experience psychosis are not likely to be violent towards others. One study found an increased risk of violence only among those with mental illness who also abuse drugs or are young men. Such risk factors and an individual’s history would, of course, be a part of any decision about whether to wean someone off medication.
In this context, a blog post by Thomas Insel, the director of the National Institute of Mental Health, received much attention last year. Insel described a Dutch study involving 103 people treated for schizophrenia and related disorders. The participants were randomly assigned to one of two groups: Half remained on drugs continuously; the others stopped taking drugs when they became well but restarted them if symptoms emerged. After seven years, the researchers found that those who were not continuously on drugs had a much greater likelihood of getting a job and resuming their regular life activities than those who remained on medications. Remember that people who stop drugs have a higher rate of relapse? It turns out that over the seven years, those who remained on the drugs relapsed as often as the others.
“For some people, remaining on medication long-term might impede a full return to wellness,” Insel wrote. “For others, discontinuing medication can be disastrous.”
The problem is that we do not know who is in which group.
A man I have known for many years has had some serious bouts with psychosis. He has been hospitalised multiple times, and his thoughts have put him — though not others — at personal risk. However, the medications have also put him at risk. He is now overweight and has diabetes and his kidneys are not working well. He spends a good part of his day sleeping and the rest watching TV.
We have tried in the past to reduce his dose, but these efforts have never gone well. Within days he would be hallucinating and delusional. However, recently we found that with a very slight reduction in dose, he would relapse for about a month but then improve. Perhaps it was his age or greater experience, but he was able to get through the bad days without getting into trouble, and once things quieted down in his mind he felt better. We have agreed to slowly proceed.
His family supports his choice. We all understand the risk of dose reduction, but we see it in the context of all of the risks. Maintaining his present dose is not without consequence. I have known him for a long time, but the problems of schizophrenia tend to start early and he is still a young man. Even if it takes five years to get him on a significantly lower dose, we have the opportunity to improve the long-term quality of his life.
The Dutch study shifted the focus away from the belief that we need to eradicate all symptoms of schizophrenia to a focus on improving the quality of patients’ lives and health, the relationships they have, the work they do. Some people can learn to live with voices. Some people find that the voices have a significant meaning for them and that communicating with them is what is most important. Some people can learn to talk themselves down from delusional thoughts. And some people might choose hearing voices over being 30 pounds (15 kilograms) overweight and tired all of the time. The point is that this is not a choice I should be making for my patients; it is a choice I need to make with them.
Sandra Steingard is medical director for mental health and substance abuse of the HowardCenter in Burlington, Vermont, and an associate professor of psychiatry at the University of Vermont College of Medicine.