Editor’s note: The following is prepared notes for testimony provided by Sandra Steingard, MD, to the Vermont State Senate on February 17, 2016. Dr Steingard’s testimony begins at 6 minutes, with questions and answers that are not in these notes, but well worth seeing.
Vermont is a wonderful state and I am privileged to call it my home. We are known for our progressive ways, and this extends to our mental health care system. However, there are intense disagreements here – as there are everywhere – and I have learned in recent years about how changes that seem positive can have unexpected consequences.
In 2011, our state hospital closed suddenly over the course of a 24 hour period when it was flooded during Hurricane Irene. A battle that had been raging for decades – do we need a state hospital? – required an immediate answer. The Governor and legislature agreed to build a new hospital but with a maximum of 25 beds as compared to the 54 beds contained in the old one. To replace this, we developed several innovative recovery programs. But we also started admitting people to our community hospitals who would have, once upon a time, only been accepted at our state hospital. The idea was that this would allow people to remain closer to their homes.
This is where is gets complicated. The laws and procedures for forcing people to take drugs against their will had been fairly stringent in Vermont. While there are many here on MIA who think that any law that allows this to happen sets the bar too low, it has been my experience that Vermont has much better protection of due process than other states where I have worked (Massachusetts and Pennsylvania). The legal process would typically take weeks to months. But when the community hospitals became involved, they brought their considerable power to the discussion. Many of the community hospital psychiatrists – including the majority of the faculty at the academic hospital in Vermont – objected strenuously to the many due process protections embedded in Vermont law.
Health care reform factors into this because with the many changes underway, the community hospitals and especially the academic medical center have enormous power and influence in the state. In 2013, the legislature reviewed the procedures for forced drugs and changed them by allowing for this process to accelerate in some circumstances.
But this was not good enough for some parties, and in an unusual move, Governor Shumlin added a change into his budget bill that would have sped the process up even more. He argued that this change would save the state $5,000,000 because people would get started on drugs faster and get discharged faster.
The House Human Services Committee was one of several committees who review the budget and they held hearings on this issue. I was asked to testify and what follows are my comments.
When I came to Vermont from Pennsylvania 23 years ago, I was shocked at the legal process. In Pennsylvania, it would take up to one week to give a person drugs against his will. This happened after a rather perfunctory hearing and a request to a colleague to render a second opinion approving the use of drugs. In Vermont it took months and involved long legal proceedings. I thought at the time that this was a waste of limited resources. I did not understand why Vermont was so suspicious of my good intentions and medical knowledge.
But over time, I have come to believe that caution is warranted.
I will try to make four main points today:
- Our diagnostic systems are not refined enough to allow us to know who will respond to which kind of treatment.
- It has been axiomatic in psychiatry that antipsychotic drugs are essential in the treatment of psychosis, and I believe there is adequate data to allow us to challenge that proposition.
- The antipsychotic drugs are not quite the miracle drugs they are often purported to be.
- There are increasing concerns about the effects of antipsychotic drugs over the long term, and this may be having more of an impact on who is spending long periods of time in our hospitals than the refusal to take these drugs.
- There are non-pharmacologic ways of helping people who are psychotic. Because we have had such a drug-centric approach to treatment, non-pharmacologic approaches are not adequately employed.
Our ability to arrive at a psychiatric diagnosis has not advanced much in the course of my career. Our understanding of the underlying nature of these problems has mostly resulted in deepening our appreciation of the complexity of neural function. A recent study that was heralded in the press as showing a big breakthrough in the understanding of schizophrenia found that multiple gene sites involved in what is called “pruning” increased one’s risk of being diagnosed with schizophrenia. While fascinating, what did not receive attention is that this new finding accounted for only a 4% increased risk of developing psychosis. These reports tend to suggest that it is best to understand schizophrenia solely as something that happens inside the brain, independent of life experiences. Perhaps this is true for some but we now have an increasing understanding of the ways in which traumatic life experiences – such as poverty, social isolation, bullying, violence, and other forms of abuse – can result in many of the neurological changes in the brain described as explaining psychosis.
We have tended to think of those conditions that are “brain problems” as most amendable – and maybe only amendable – to drug treatment. We tend to think of those problems that we consider as “psychological” or “environmental” as most amenable to non-pharmacologic treatments. But these are false distinctions. We are in constant interaction with our environment. It is almost impossible to tease this apart and get to root causes of the problems we encounter in clinical practice. The vulnerability to environmental stress makes us all vulnerable to the many problems that beset humans but it also brings us hope since the environment can change and the brain can recover.
What are antipsychotic drugs? When they were first introduced, they were called major tranquilizers. The French physician who introduced them to the psychiatric hospitals did so after he noticed that they caused indifference. As recently as 2009, a major US psychiatry textbook notes that normal volunteers who take these drugs experience “feelings of dysphoria, paralysis of volition, and fatigue.” (unhappiness, lack of drive) These drugs can cause tremors, muscle spasms, involuntary motor movements, weight gain, diabetes. There are good reasons why people would be reluctant to take them.
Yet, for most of my career, I thought that drugs were essential and delay in treatment was not at all helpful. This notion came from the following sources:
Efficacy of the drugs: When the antipsychotic drugs were first used, it seemed to be helpful for many people who took them. However, if you look at current meta-analysis on efficacy they still all favor antipsychotic drugs. However, the effect size of recent studies is much lower than is generally acknowledged.
Other recent studies show only modest reductions of symptoms in people who take the drug as compared to those who take placebo. One study of people over 40 who were followed for two years, found no effect of drugs on any outcome measure.
On a pragmatic level, I would argue that many people who are in hospitals for extended stays are there because the drugs are not effective in reducing symptoms. In some instances they once were, and the declining effect of the drugs over years – while not entirely relevant to this hearing – has been a strong focus of my interest over the past few years. I reviewed the 8 Howard Center clients who are currently in hospital on Emergency Exam (involuntary status) or court ordered observation. Two are refusing drugs that I believe were helpful in the past. Five, however, are on drugs and were on them at admission but experience limited benefit from them. (One was off drugs but started them after admission.)
Duration of untreated psychosis: There has been a hypothesis in the field for over 20 years that delaying the use of antipsychotic drugs results in worse outcome. Researchers had noted that in the early studies, the group that was put on placebo did not catch up to the group that had been given active drugs, even after the study ended. Richard Wyatt, an influential psychiatrist, wrote a paper on this in 1993 and looked at other studies that he thought suggested that delaying drug treatment was harmful. This idea – a hypothesis – quickly became part of the accepted wisdom of our field. I have reviewed this literature and taken into account more recent studies. I do not think this hypothesis has been supported by ongoing research. While early intervention seems to be helpful, this intervention does not need to include drugs.
I have come to have many concerns about the anti-psychotic drugs. There is growing evidence that taking them continuously over many years may not maximize recovery. There are many studies that support this conclusion. In one important and recent study published in JAMA Psychiatry in 2013, over 100 individuals with first episode psychosis, after 6 month stabilization period with drugs were randomized to either take the drugs continuously or only when symptoms were recurrent. At 7 years the group on intermittent drugs had a 40% recovery rate, as compared to a 17% recovery rate in those who were maintained on drugs continuously.
As I have had increasing concerns about our current drug-centered system of care, I have studied non-pharmacologic treatments.
The International Hearing Voices movement, in which voice hearers help each other to make sense of and live with their voices and to understand the ways in which the voices are an experience to be understood as opposed to eradicated, is just one piece of evidence that for some non-pharmacologic interventions are helpful. We have begun to implement this approach in some of the DA’s and we have an intensive training planned for next month.
Another approach is Open Dialogue from Northern Finland. This is a paradigm of care that involves the individual and his family. They do not consider drugs an essential element of care and they try to avoid using them. In other ways, however, they share many of the values we hold dear in VT and they embody many principles of recovery:
- Flexibility of services
- Families included in an open and respectful way.
- Peer involvement (now being piloted here and in the UK)
In 5-year outcome studies of people experiencing a first episode of psychosis, only about 20% of people are on drugs and only about 30% have even been exposed to drugs. Yet, only 19% of their group is on disability. This is dramatically different from even the best first-episode program in the US.
There is another reason to mention Open Dialogue. It appeals to people with lived experience in the mental health system, to family members, and to those clinicians who have had some exposure to this way of working. You have all had enough experience of the many battles in this field to know that a treatment approach with such wide appeal is uncommon.
I have personally witnessed dramatic improvement in people who have taken these drugs – even under force. I work with people where I have come to the conclusion after many years that I have no way to be of help other than to offer these drugs – even under force. However, I also witness less positive outcomes. This is such a serious and intrusive act on a person. When this topic comes up, brave people who have been on the sharp end of the needle come forward. They are angry. They are not so sanguine about leaving the decision up to the well-intentioned psychiatrists. I know folks like this, too. Some people come out of this experience angry, frightened, and alienated, and I have – in the past at least – taken some comfort in knowing that we had a vigorous legal process in place. Their stories are as true as the stories from psychiatrists who talk about people who ask – after the fact – “Why did you take so long?” People who are labeled with psychiatric conditions are often poor and less well-educated than the doctors, lawyers and judges who hold power in the system. One thing I did not appreciate when I was a young psychiatrist – who was baffled by VT’s legal system – is how much power, even with the best laws, is given to those with economic and educational privilege. Gov. Shumlin mentioned in an interview that it was cruel to withhold treatment. I think it is cruel to deprive people – who often have so little – of their rights to a fair hearing.
A final note: This plan is supposed to save us $5,000,000. If it goes forward, can we invest $1,000,000 in Open Dialogue? There is a group in VT who is already piloting this. We would like to go further. We believe VT could be on the forefront of implementing a progressive, humane, and respectful treatment for our citizens and we believe we might ultimately save the system money by diverting people from a life of long-term disability.