I was invited to present a work shop with Dan Fisher, MD PhD at the NAMI-VT annual meeting. These are my comments. They reflect my long term beliefs integrated with my reappraisal of practice in the past year.
First and foremost, we should be careful and judicious in how we use these drugs. They have serious side effects and they are not as effective as is commonly thought. There are people who seem to do better without them and we do not yet fully understand their long term impacts.
At the same time, they can be extremely helpful for people who are in acute distress and in some cases their benefits are dramatic and life saving.
Through my contacts with Robert Whitaker, I have connected to a number of people who have recovered after an experience of psychosis and have either never used medications or stopped using them. I have found that it is very important to listen to them and to hear their stories. The more I know of these stories the more I can talk to someone with a genuine spirit and hope about recovery.
This experience has led me to conclude that it is not helpful to people to focus on brain abnormalities but to talk about the brain in distress (I have been influenced by Dan Fisher, Corrina West, among others).
At the same time, I think it is important to avoid blame. We all need to be humble about our understanding of psychosis and I believe it is probably different for different people. There seems to be a tendency to judge others when treatment outcome is not good : and this can go in all directions – the medications cause the problem or the lack of medications cause the problem, the doctor was bad, the family environment was bad, there was poverty, trauma. I do not think we have enough data to do this and I don’t think the focus on blame is helpful. One thing that attracts me to the study of Open Dialogue is that it seems to be about understanding the current experience without assigning blame or cause.
Be wary of how our personal biases lead us to interpret what we observe:
People relapse when they are on or off medications. In any given individual it is hard to know what actually caused the relapse and there may be social factors that get overlooked when the greatest emphasis is on medication compliance.
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.
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.
As with anything in medicine, the basic tenant when recommending treatment is informed consent. I believe I need to have an honest and make a decision with each person about the best approach to treatment.
- It is not controversial to say that these drugs can cause tardive dyskinesia, weight gain diabetes, hypertension.
- We need to include a discussion of possible brain loss and worse or at least unclear outcomes for those who remain on these drugs over many years.
I have tracked my practice for the past year. I hope 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.
My best guess is that, as with many other treatments, there is a variability of response that reflects the variability of what we are treating. In our current first episode study, I am struck by the extent to which psychosis occurs in the context of substance use and social dysfunction. We have individuals who do well when we are successful in persuading them to stop using substances and when we get them housed.
We need to offer people choice. This is such a values laden discussion that I find it hard to make group recommendations. Relapse for one person may not be as hazardous as relapse for another. Therefore the way a person evaluates the various risks and benefits of treatment will be different. We treat an individual not a risk and in only exceptional circumstances should someone other than the individual choose which risk she wants in her life.
We need to talk about a multitude of ways to improve health –
- Eating well, exercising, getting adequate sleep.
- Cannabis, alcohol, and other drugs can be destructive to a person’s well being; we need to encourage abstinence and give a person the tools to remain abstinent.
- Various forms of psychotherapy are often helpful and they need to be available, recommended, and encouraged.
- Vocational program and peer recovery involvement is helpful.
- We need to help people who are homeless get off the street and into safe housing.
It has always been clear to me that my role as the person who prescribes medications is and should remain a small part of a person’s treatment and recovery and this belief has not changed.