This week we launch Mad In America Continuing Education. It is an enormous privilege to be a part of this project and to proudly announce that the first course offering is a series of lectures by me on neuroleptic drugs. I review the history of the development of these drugs as well as their short and long term effects. I discuss what conclusions I have drawn from the data; I recommend that we need to work harder to keep people off these drugs or – if we use them – to minimize the dose and stop them as soon as possible.
But there remain other pressing concerns for those individuals who are currently taking these drugs. There is almost no guidance on how to implement what should not be a controversial statement – it is better to be on as small a dose as possible. We are caught between competing models of practice and vast territories of the unknown. If someone is started on a dose of medication in a hospital over the course of a short stay, we do not know if that dose is the minimally effective dose.
There seems to be no escaping the conclusion that – at least over the first two years – the relapse rate will be higher when the drugs are stopped. Our current system of care prioritizes preventing relapse over other concerns – metabolic syndrome, tardive dyskinesia, brain atrophy, impaired functional outcomes. Since these drugs have been with us for 60 years and for at least 30 years it has been axiomatic that everyone should be advised to remain on the drugs indefinitely, there are many people who have been taking them for many years. If one begins to question current treatment guidelines, it is unclear how one can safely reverse course or even if it makes sense do this.
I came to the conclusion that the principle of informed consent obligated me to share these questions – proactively, not just when individuals were complaining – with the people I see. As I have done this, I invited people to try – slowly – to reduce their doses and I have been tracking my experience as some people choose to taper their dose and others choose to leave things alone.
The group I will describe in this post are those with whom I had this conversation over a year – May 2011 through May 2012. I have been tracking them since and in this blog I will report on their status as of May 2014. When people wanted to reduce, I suggested that we reduce by ~20% of the initial dose not more frequently than every 3- 6 months. Since this was not a study, just a recommendation, what people chose to do varied. Some who initially wanted to reduce, changed their minds. Some who initially did not want to change, eventually decided to try it. This makes it harder to summarize but it is the way things work in clinical practice. The decisions were very much driven by the person taking the drug and first and foremost I respected those decisions. At the same time, I had some people who chose – against my advice – to abruptly stop taking the drugs. Almost all of these individuals had done this before. Their outcomes were so different that I decided to track those as well and compare them to the other groups.
If you look at the past posts on this project (here and here), you will notice that the numbers have changed. That is because in the second year, I combined my data with that of a colleague who was doing something similar in her clinic. However, she was not able to continue this tracking so for year three, I am just reporting on my own experience following 80 individuals.
The following chart includes demographic information. “All Tapers” refers to all of the individuals who at the initial point indicated an interest in tapering. Similarly “No Change” refers to those who at the outset, did not want to reduce the dose, and “Abrupt” refers to those who abruptly stopped taking the drug. People changed from one group to another over time and I will discuss this below.
The next table includes the average dose of drug for each group. Since people were treated with many different types of drugs, I converted them into risperidone equivalents using the table found here. While I am not sure this conversion is valid in the sense that we are not sure that these drugs at these doses work in equivalent ways, this conversion helps to measure the percent reduction. Therefore, I use this more as a guide to measure the changes in dose rather than as way to evaluate the absolute dose.
The first two columns provide information on those who, at the outset chose to taper or not, respectively. Since people changed status over the course of the three years, I also calculated the total dose reduction for those individuals who were tapering their dose at the end of the third year. This includes the 17 individuals who from the outset indicated a desire to taper and stuck with this over three years, 1 individual who abruptly stopped and did not do well eventually stabilized and then began to slowly reduce the dose, and 7 who initially did not want to taper but then changed their minds and began to do reduce the dose of the drug. While the reductions in the initial taper group are modest – 27%, they are substantial among those 25 individuals who continued to taper over three years – 76%.
The most pressing question concerns what happened to these individuals. Since the biggest worry for some is that people will become psychotic and require hospitalization and since admission to hospital is easy to track, I include that information in the following chart. There were three individuals who died during this three year span and although in my opinion and that of others it was unrelated to the taper, I report on that here. I was also able to track who was working at the end of the third year. And finally, to give some sense of peoples’ attitude about this process, I include information regarding who changed their status over the three years. The categories- Taper, Abrupt, No change – in this chart refer to the person’s initial status.
I also looked more carefully at the work status. Of those who remained with the taper over the full three years – the group who was able to reduce dose by 76% – 8 of the 25 (32%) are working. Among those who never tapered or started and stopped the taper – this includes 43 individuals in total, only 6 (14%) are working at year three. This also compares to an employment rate of ~ 17% in the program in which all of these individuals are enrolled.
I am hesitant to make too much of this. This is, after all, a chart review and the numbers are small. Also, even if this trend were to hold up with larger numbers and in a more rigorous trial, correlation is not the same as causation; I can not say that the dose reduction was the reason why people returned to work. However, it is interesting since one of the main reasons to try this – to accept the risk of a recurrence or worsening of psychosis – is the data suggesting that the drugs negatively impact functional recovery. These results go in that direction.
I would add that knowing these individuals, I can think of other reasons why work may have increased. It may not be a direct drug effect – although at the very least, less sedation would certainly help a person feel more like getting a job. But the conversation itself is a recovery-oriented conversation. When we talk about reducing dose, we are talking about ways of thinking about the problem that counter the notion that there is a fixed problem with a fixed treatment – drugs for life.
The conversation includes the uncertainties involved in the decisions but in doing so, it empowers the person to be active in the decision making about his treatment and his life. I say to a person, I am not sure what is the best option for you, it is your life and I need you to make this decision with me. It embodies the notion that what happened to a person at one point in his life, may not dictate how he lives his life indefinitely. It is certainly possible that those conversations contributed to the increased interest in getting a job, the increased confidence in being able to work, the notion a person may have about himself, that he can be a person who has a job.
I started this tracking because I thought this information would help me and those who consult with me. They know I am doing this and I share – anonymously – my experiences with them. However, I knew I would remember and be influenced by the worst outcomes. This is true. These days, my memory sometimes fails me but I can tell you about every person who was in the hospital. And while almost all of these individuals are doing OK now, it has been wrenching in some instances.
I have been surprised; I am humbled once again by what I do not know and can not predict. With some, the alliance I thought I had and hoped to keep through the process was lost. This has been integrated into the narrative I tell people as we make these decisions together. I think this has been and will remain a challenge for psychiatric practice. The gains are important – in my opinion vital – but one experiences them in a more subtle and less dramatic way. If I had not kept track of this, I think I would have a good estimate of how many people were hospitalized. I would not have a clue that 32% of those who tapered were now working as compared to 14% in the other group.