 Good evening! Hi! There's a small enough room that I can yell. My name is Toss Cochran. I'm the director of neuroethics at the Center for Bioethics, and thank you all for coming to the first neuroethics seminar of 2016. We've got a great topic that I can tell is of interest to a lot of people. This is a great turnout for us. The topic is deception in the diagnosis and treatment of psychogenic non-epileptic seizures, or PNES. As always, our format is that we will have our panelists speak for about an hour or less, and then we'll have another half an hour left for audience participation. We also have dinner planned upstairs. It's an informal sort of dinner. We haven't been having people RSVP for it because we've always had plenty of food for the number of people. Tonight might be an exception. Hopefully there won't be fisticuffs, but it might be first come first serve when it comes to the food. Everyone's welcome to stay in the room and continue the conversation, but we might not have enough food for everybody if everybody comes. So, hang around afterwards if you're interested in continuing to talk or to eat with us. We've got three panelists tonight, and I'm just going to briefly introduce them and then let them go, so that we have as much time as possible. Before I do, I want to thank the Center for Bioethics and our funding support. We are supported by the Harvard Brain Initiative and the Harvard MindBrain Behavior Faculty Initiative in terms of arranging these, and the International Neuroethics Society allows us to webcast this live. So, we are on camera, and I know for a fact that we've got at least one European viewer, so we're on around the world. If you're watching this remotely, please feel free to tweet us questions at HMS at HMS Bioethics. I'll be monitoring the Twitter feed during the Q&A session, and if we get a chance and you've got a good question, we'll try and squeeze it in. So, please, I encourage you to do that. So, our first speaker tonight is a colleague and friend of mine, Ben Tolchin, is a senior epilepsy fellow at Brigham and Women's Hospital. He's also currently in the Medical Ethics Fellowship at the Center for Bioethics. He's an active member of our Ethics Consultation Group at the Brigham, and so you can you can see why he's perfectly placed to set up the topic for us tonight. He's also got some funding through the American Academy of Neurology to do some research in an effort to improve the care of patients with psychogenic, non-epoethic seizures. Our second speaker comes to us from the University of Southern Florida. Salim Ben-Badis is a professor of neurology and an epileptologist there, and he is the director of the University of Southern Florida Epilepsy Program, which is a very active program, including performing epilepsy surgeries, and he has written on this topic before, and so we're definitely looking forward to his thoughts. And then finally, Wes Boyd is a colleague of mine at the Center for Bioethics. He teaches in the Medical Ethics and Professionalism course at the Medical School and in our Masters in Bioethics course, as well as at the undergraduate campus. He is a psychiatrist at Cambridge Health Alliance, and we'll give us his thoughts from an ethicist's perspective, but also that of a psychiatrist. So first up, we'll have Ben Tolchin. Thanks. Thanks for coming. So what I'm going to do is introduce the topic of psychogenic, non-epoethic seizures, or PNES. I know I can see there are some very experienced epileptologists in the audience, but also there's some folks from other areas. I'll try to give a little bit of the background to bring everybody up to speed on what this disorder is and how we diagnose it. So psychogenic, non-epoethic seizures are proxiesmal events involving involuntary movements for alterations in consciousness without associated EEG changes. They're caused by psychological factors. I think these are most often strong affect or stress that the patient may or may not be aware of. They're considered a form of conversion disorder, what is now known as functional neurologic symptom disorders in the new DSM-5. The large majority of cases of PNES are fought not to be under the patient's conscious control and not consciously produced, though there are rare cases of malingering and fictitious disorder in which PNES are produced for primary or secondary gay. The incidence of PNES is up to four per hundred thousand per year. The prevalence is up to 33 per hundred thousand. And to put that in perspective, that's about 5% of the prevalence of epilepsy, about a third of the prevalence of multiple sclerosis. The PNES is commonly seen by neurologists, psychiatrists, and emergency physicians. About a third of the admissions to epilepsy monitoring units across the country are ultimately diagnosed with PNES. In the past, the dual diagnosis of PNES and epilepsy was thought to be very common. It's probably been quite overstated. People said that the rates were as high as 50% of patients with PNES also had epilepsy. In fact, more recent studies, more rigorous criteria to suggest that the rates are more like 10% of the patients with PNES also have epilepsy. The disability caused by PNES is very real and very substantial. Disability is rated as highly by patients and by their families as is disability caused by epilepsy. The patients are economically and socially dependent. Most patients cannot drive, cannot work, cannot care for children. They have frequent emergency department visits, hospital admissions, and they have very high medical care costs. Historically long-term outcomes of PNES have been very poor. So about 75% of patients continue to have psychogenic seizures and the associated disability at 5 to 10-year follow-up. There's also a slightly increased rate of premature mortality, which is thought to be mediated primarily by low socioeconomic status. There are also rare cases of iatrogenic mortality in cases of PNES. So the best study form of treatment is cognitive behavioral therapy and similar forms of psychotherapy. Several observational studies and two pilot randomized clinical trials have shown that CBT-based therapy is effective in reducing seizure frequency and improving quality of life in PNES. There are also several observational studies that show improvement in these factors with other forms of psychotherapy, including brief psychodynamic psychotherapy and group therapy. Psychopharmacological interventions like SSRIs are certainly affected in treating psychiatric comorbidities, which are quite common in PNES, but have not been shown to be affected in treating PNES directly. A randomized trial showed that the immediate withdrawal of AEDs or anti-epileptic drugs at the time of diagnosis is more beneficial for patients than gradual taper off medication. So that's sort of the standard of care at this point. PNES is the single most important differential diagnosis for refractory epilepsy. In one study, 78% of patients with PNES had been previously misdiagnosed with epilepsy and had been treated with at least one anti-epileptic drug. Historically, the mean time from symptom onset to diagnosis of PNES has been about seven years, although it's thought that in recent years we're getting better at making that diagnosis more quickly. There are elements of the clinical history that do increase the likelihood of the diagnosis of PNES in terms of a Bayesian analysis. So for instance, adult patients diagnosed with PNES, 75% are female, 80% have a history of abuse or trauma, 70% have psychiatric comorbidities. One study showed that a history of fibromyalgia or chronic pain in a patient presenting the seizures as a 75% positive predictive value for PNES. But of course, no element of the clinical history is sufficient to make a definite diagnosis of PNES and in some cases, particularly pediatric cases, the risk factors are quite different. Seizure semiology also can provide hints, can increase or decrease the pre-test probability of PNES. Seizure semiology is what a seizure looks like and what the patient experiences during the seizure. So for example, eye closing during the seizure or intact recall for events that occurred during ICDOL and responsiveness and very good sensitivity and specificity from PNES. Hip pelvic thrusting or horizontal movements of the head or torso have a poor sensitivity to a very good specificity suggesting PNES. On average, episodes of PNES tend to be longer in duration and more frequent than episodes of epileptic seizures. Nonetheless, when experienced neurologists are shown videos of psychogenic and epileptic seizures and asked to distinguish between the two, their accuracy is only 67-80% when just reviewing the seizure semiology without seeing EEG data. So ultimately, clinical history and semiology in combination with an interictal routine EEG can make a diagnosis of probable PNES. To make a definite diagnosis of PNES requires video EEG capture of all the patient's typical episodes with showing that there's no EEG change during the episodes and ideally showing that there is a normal waking background before, during, and after each typical episode. Important caveats are focal seizures without discognitive effects which was formerly known as simple partial seizures and frontal lobe seizures, both of which can occur without any epileptiform abnormalities on surface EEG. In order to make this diagnosis, what is usually required is an admission to an epilepsy monitoring unit in a tertiary care medical center for prolonged video EEG monitoring over on average four to five days. And what's done there is the seizure medication is drawn and the patient is monitored closely until they have their typical events and then the events are analyzed by experienced epileptologists to evaluate whether there is any EEG change correlated with the events. So a typical event that we'll use to sort of illustrate this process is that of Ms. W, who recently presented to our center in the Superreal case. So Ms. W, she's a 27-year-old lady who has history of depression, anxiety, and severe obesity, starts post a gastric bypass in June of 2015, represented with a year of convulsive episodes. So she was, her events are currently happening about once to twice per week and they consist of a sudden loss of consciousness, from weightfulness, with stiffening and bilateral arm and leg shaking associated with moans and grunts and sometimes with striking of the bilateral arms against her chest and head. There is post signal confusion. The event itself lasts about two minutes and then there will be 15 to 30 minutes of confusion. There is no tongue-biting or urinary incontinence. When, and the patient herself has no memory of these events, in terms of risk factors for epilepsy, she does have a family history. Her mother has multiple sclerosis and did have a seizure when the mother was 13, was treated with a barbitol for a year and then taken off. When asked about stressors, the patient reports that she's been having increasing difficulty maintaining her diet and exercise regimen for her gastric bypass. She was seen by an outside neurologist. She got had a neuroexam that was reportedly normal and MRI of the brain, which was normal, a routine EDG that was normal. And she was started 11 teracetamide anti-seizure medication, which was repeatedly obtitrated for ongoing convulsant episodes. And then she was switched over to an emotrogene, another seizure medication without any improvement in the convulsant episodes. And at that point, she was referred to our epilepsy center. When she came to us, she was quickly brought into the epilepsy monitoring unit and tapered off of the motrogene. After 48 hours in the epilepsy monitoring unit, she had had none of her typical episodes. Her EEG at that point showed no definite abnormalities. She did report that she was having some episodes of bilateral leg paristhesias, but none of the convulsant episodes that she was being evaluated for. And so the question is, it was 48 hours into this long-term evaluation, what is the next step? So we're going to take care of this. So thank you for having me first of all. I need a second time that I speak here. The last time was a year ago, and both times thanks to my colleague Barbara, for a piece of thank you for inviting me. I had a daughter in Boston. So let's take care of Ms. W. As you heard, these were very important points, and I'm going to highlight a few that you already made. This is common. This is disabling, and it can be treated. So those are three arguments why making the diagnosis is so important. You know, in neurology, especially 100 years ago, we had the reputation that we diagnose and then we do nothing. That has changed. And for many things, we can treat. So now the importance of making accurate diagnoses are even more high level. So this discussion is not new. I've had this discussion in writing a few times. This is 2001 with our late colleague John Gates. There's always been a little bit of controversy about whether or not we should use activation protocols. This was again in 2009 with a younger counterpart. And in my view, they lost the argument both times, but of course, I'm biased. And I will show you why there are several recent papers on the topic. There are many. This is a recent one that I like that summarizes the different ways of doing induction. So there's a lot written on the topic. And I will cite some of it. So the diagnosis, as you heard, is typically suspected clinically as in Ms. W, but can only be made confidently and definitely with PG video recording that records the episodes in question. Here's what I meant by the importance of making the diagnosis. We know that the average delay for diagnosis right now is seven to 10 years. This is studies in the US or advanced countries that have the eG video monitoring. It is not an accessibility issue like when you go give a lecture in Mexico or rural Chile. This is in places where we have the equipment we have capability. It's more of a culture and an attitude of physicians that causes the delay. And typically, the delay causes the patients to take multiple medications undergo multiple procedures, go to the ER, not get the right treatment. And we know that the prognosis with treatment is worse if the wrong diagnosis has been perpetuated for longer. So we're talking about induction methods. The basic principles of induction is to trigger an episode when none occurs spontaneously as in Ms. W. If you let her go after 48 hours, which are expensive, by the way, 48 hours of admission, you let her go. You have no diagnosis. She goes home. She continues to take the limotrigin and levator acid after another seven to 10 years. Now you could keep her longer, which we try to do, but insurance calls in our back to because they want the patient discharged. So there is a real economic argument here practical argument to try to make a seizure happen. So we can get the diagnosis. In addition, as I will show you, that's the main reason for doing induction. But there is another reason and I will show you because that one is not often mentioned. It strengthens the diagnosis for patients who need the diagnosis to be a little stronger. It's an added argument for the diagnosis of psychogenic episodes. As I said, there are many ways to do this, some with placebo, some with that. And you've seen this and you've read about it. The classic old one is the IV placebo and we have shied away from this because ethically it is the most problematic. There is something semi invasive about injecting something even if it's normal saline in somebody's vein. And we have also largely and most centers have abandoned other things like patch tuning fork and things that are really crazy looking. And what we do most often now and my understanding is that that is what most centers do is use procedures that we use in a regular EEG, which is hyperventilation, photo-extimulation and a little bit of verbal coaching. There are advantages in using those because the yield is the same as using IV placebo or quirky maneuvers and it doesn't raise suspicions. You don't have to deceive as much because these procedures are done on everybody to induce a seizure. That's the truth. So the deception is minimized when you use hyperventilation, photo-extimulation and verbal suggestion as opposed to IV placebo. So just to drive the point that you heard, these are dramatic. These are severe episodes. I think what you see is you will understand is people can drive a car. This is truly disabling whether it's epileptic or psychogenic. These are disabling. You'll also notice some of this cold-ash patients are having it triggered by flashing lights, not all of them. Sometimes it occurs spontaneously. But this is how we make a diagnosis. This W could have her typical episode like this in the monitoring unit. With good video, good EEG, we can make in nearly certain diagnosis, nearly 100% accurate diagnosis. How often can we say that in neurology or in medicine for that matter? So I would argue that depriving ourselves of a method that helps us get 100% certainty when we make a diagnosis is not good practice. Now, we don't always need to do it as I will show you. It needs to be done in patients and for patients in whom it helps. It adds something. These are patients who did not have an episode spontaneously. Otherwise, we don't do it. If Ms. Dumbo, you had an episode in the first 12 hours and I have a diagnosis, I don't have to do an induction. We don't do it for the fun of it. We do it if it adds to taking care of the patient and getting a proper diagnosis. But I'm showing you this for those of you who don't see this every day that these are severe. These patients cannot function. So getting the right diagnosis so we can get them the right treatment is important. So they are most of the time the diagnosis with EEG video is clear. These are easy cases that I showed you. It's not always like that. I showed you somewhere there wouldn't be much controversy about the diagnosis. It's not always like that. Like everything else, they are patients that are more difficult. Patients who have more than one type of events, for example, you have to be very careful that we can only conclude as to the nature of the episode we recorded. Very important. It's a common cause of error. Theoretically, also remember when we induce an episode or not and we record an episode with EEG video, we can conclude with the absence of any EEG discharge inter-epidemiastically that the episode is not epileptic. Not epileptic does not necessarily mean psychogenic. The reality, as you mentioned, is that most of the time it is. But it's not synonymous. There's another step. So to go to the next step and say it's psychogenic, we need to analyze the phenomenology of the episode. That means the video, the semiology, meaning that it's not a syncope. It's not a TIA. It's not Parkinson's disease. It's not essential tremor. It's not alcalypsy, etc. We have to act as neurologists. And of course, the neuropsychological profile, including suggestibility. This is what I meant when I said the positive induction by itself strengthens the suspicion that this is psychogenic. Not just not epileptic, psychogenic. Other pitfalls of EEG video, you touched on very nicely simple partial seizures. We know what they are. But some seizures do not cause EEG changes. We know what they are. So we are careful. Again, you have to interpret EEG in the context of the video and vice versa. Also, as I will show you, seizures when they are violent can completely obscure the EEG becomes useless. So these, the first two here, are two scenarios in which the EEG part of EEG video is useless. It's worth nothing. And that's when inductions come. Because then it's another argument. I lost EEG, either because it shows no change, because in that type of seizure it doesn't, or it's obscured. The induction, in addition to triggering an episode, gives you a supplementary argument to say that it is psychogenic. So, just to review. The main use of induction is like Ms. W, to induce an episode if she doesn't have one spontaneously. So it increases the yield of EEG video. When no spontaneous events are recorded. What that means is it turns in somebody like Ms. W, it turns an evaluation that would have been useless. Inconclusive, we can only say we didn't record nothing. I don't have a diagnosis. Continue to take your seizure medications. It turns that into a conclusive evaluation. I think that is worth it. That's my argument. Also, it means that we can make diagnosis in patients who have events that are not very frequent. But if they are suggestible, I can obtain a diagnosis by doing a one hour study. A one hour EEG video. No need for 24 hours, 48 hours, three days, four days. Very expensive. Insurance doesn't like it. They don't approve it half the time. One hour. A patient. Done properly if the patient is suggestible. In one hour, I trigger the episode with the caveat we mentioned, including the very important one, that what we just induced is what she is doing at home. You've got to have that discussion with the family. Confirm that. But with that, the yield of this, we can do studies on this, as you can see. It's the same as EEG video. It doesn't matter if the patient is monitored for three days or for two hours if I can record the habitual episode. So this is a very practical. It makes patients that would be otherwise undiagnosable because they have rare events. It makes them now obtain a clear diagnosis. It's also useful for induction. When you have to give extra convincing arguments, some people are difficult to convince that this is psychogenic. Sometimes it's patients, sometimes it's families, sometimes it's attorneys, and sometimes, often, it's psychiatrists. They tend to not believe that very much. But if I can show them that I induce this with a placebo, maybe I can sway a few and make them believe the diagnosis. Many of them still won't. Now, I showed you easy cases. Here are some difficult ones. Is this psychogenic or is this a simple partial seizure, simple partial motor seizure? And the reason I show this and the reason this is difficult is if this is a simple partial motor seizure, focal motor seizure, oftentimes this type of seizure is the type that does not produce changes on the EEG, equally. So if I record this with the most beautiful EEG and the EEG shows nothing, I cannot, based on that, alone conclude that it is psychogenic. I have lost the EEG. It's one of the scenarios I mentioned earlier where you lose the EEG. The EEG is useless. If she's thrashing on both sides and has normal EEG, we can all conclude. But if she has minor heat, such as heat, minor shaking of one limb like that or like this one, unilateral, limited physically, the normal EEG by itself does not help us say that it is psychogenic. On the other hand, if I tell you that I induced five of these consistently with photo-extimulation or IV placebo, I think most of us would agree it suggests that they are psychogenic. So that's what I mean when I said in addition to increasing the yield of the patient who doesn't have a spontaneous event. It brings an additional argument. Again, often we don't need that additional argument and then I recommend that we don't use induction. But sometimes in addition to increasing the yield, it increases our diagnostic ability. Here's another one. And after having monitored these many times, I still don't know what he has. Sometimes it's difficult. I do not think these are epileptic based on multiple monitoring of this. But I cannot go beyond. I say these are not epileptic. I don't know if they are psychogenic or if they are organic as in a movement disorder, dystonia, other movement disorders. If I told you it didn't happen, but if I told you that I induced these with IV saline six times, that would be helpful. It didn't happen with it. So I still don't know. But that's a scenario where it would, the placebo response by itself is an additional diagnostic argument. This is what I mean by obscurity EG. So sometimes EG looks like this. Again, I have lost half of my test of the EG video. The video is invaluable. Wonderful to have those videos. But I don't have the EG. So if the diagnosis is easy, good. I don't need anything else. If the diagnosis is difficult, I submit to you that induction will give me another means of obtaining a right diagnosis. So I say the advantages are that it increases the yield and that it's very highly specific. If I can induce an episode, preferably the habitual episode, with a placebo, whether it's IV saline tuning fork, which we don't like, as I said, or simply hyperventilation for assimilation. If I can induce it with that, it's a strong argument to say that it's psychogenic. Contrary to what psychiatrists sometimes think and right, there is no false positives. But you might induce an epileptic seizure. So what? If I do, I know the patient has epilepsy. So it's helpful. So this false positive fallacy does not cut it. So the psychogenicity, if you will, the inducibility will help differentiate the non-epileptic event between psychogenic, non-epileptic, or organic non-epileptic, which we see also. Those comments are syncope, PTIA, movement disorders, or sleep disorders, for example. So sometimes in those scenarios, as I showed you example, the response to placebo or to induction, I should say, is the strongest diagnostic argument because EEG is useless, the simple partial motor seizure or the EEG obscured. So are there disadvantages? Do people who oppose inductions have a point? Maybe. Is there an ethical concern? Yes, a little. There is non-disclosure. No question there is non-disclosure, at least initially. But the whole school of thoughts that we shouldn't do this is because, oh, it might damage the doctor relationship and the trust, and these patients have been abused in the past, and as I've written before, and I will say it again, I think this is a nice discussion for philosophy classes, but I worked in the real world with real patients, as you heard, this is a third of what we monitor in patients with difficult seizures, and you are not going to take away a tool that helps me make a right diagnosis. It is much worse, the deception is much worse with the placebo, which is why we have shyed away, as I said, from my V placebo. We hardly ever use those anymore, but when we do routine regular EEG procedures, everybody that gets an EEG gets hyperventilation, foot stimulation, and a little encouragement. So when we do that, we are being honest, we are trying to trigger a seizure of some kind. The false positive argument, which is, well, you might trigger an episode simply because the patient is suggestible, which many people are, it doesn't mean her episode is psychogenic. The cure to that is to spend 15 minutes after the fact, discussing with the patient and the family, was this the habitual event? Yes or no? If you induce something different, you do have to be careful because that's a reason for errors. Is it harmful? So this is what I mentioned earlier. The argument that is harmful is that the damaging to the doctor-patient relationship and they've been abused before. I don't like it. Maybe, that's all maybe, and it's theoretical. What I'm telling you about the practicality that's every day. Those are facts. This is philosophy. Maybe they have a slight point. And by the way, there are two studies that I showed you here where patients were specifically asked after the activation. One was with verbal and the other one not. If they felt that it was harmful and in both studies they didn't. And that's my experience also. It is worth it when you consider everything else that we have discussed. Seven to ten year delay taking three anti-epileptic drugs. This poor MSW is taking two of them. These medications aren't benign. So yes, there is some deception but it's not harmful in a practical way. Theoretically, yes. Psychiatrists like philosophy. Perpetuating a wrong diagnosis of epilepsy has a lot of consequences. And they are listed here. These patients go from ER to again another ER. Some of them end up in ICU intubated. They take multiple anti-epileptic drugs. This is very costly to society. And we know that the prognosis is worse over time. And again, with regular EDG procedures, not IV plus C, but there is a way to do that ethically. So it absolutely can be done ethically. We use it only when necessary. As I said, MSW has two episodes in the first two days. I have a diagnosis. We're happy with this. She doesn't need an induction. We don't do it for the fun of it. As Orin DeWinsky mentioned in one of his papers that I referenced, you tell the truth, the whole truth, and nothing about the truth. Even after the fact, you debrief if they ask and you tell the truth. Which is where it becomes a lot easier if you didn't use IV saline. Because with IV saline, there really is deception. And that's why most centers don't use it anymore. But I have no problem saying that we do activation procedure, hyperventilation, foot assimilation, and verbal suggestion, because it induces some type of procedure that we want to see. So is it ethical? I think you know my position by now. Yes, I think it is very ethical. And those are the four principles that you all are very familiar with. It does promote the best interest of the patient. It absolutely does no harm. The only alleged harm is theoretical, not practical. Whereas the side effects of the perpetuating diagnosis, those are real. Medications, ICU, there is a case or two of death in ICU, because they receive propochol and adiabat and berset and all kinds of it. The lack of trust in the doctor-patient relationship doesn't kill anybody to my mind. It acts fairly with respect to different individuals. This is an interesting one. This has to do with the cost. We waste so much money. Get another MRI. Monitor her for another six days. So much money. When we could have done, be done with this and get a diagnosis. The only slight point, again, I will grant them that, that the objection people have. Yes, it does violate the autonomy a little. For a few minutes, yes, we violate the other. I am so sorry. But I'm say sparing you ten more years of dilantane and fegrator. So yes, there is some deception, but I think in my view it is well worth it and the advantages far outweigh the benefits. Far outweigh the disadvantages. So just to conclude and to put it in perspective, I think this is ethical. Let me tell you what it is unethical that we see it. We do have things that are ethical. And I saw one on TV recently. So first, I'll repeat it again, perpetuating the wrong diagnosis for obvious reasons we discussed is unethical. Secondly, the assumption that psychogenic means faking, which I'm sure in this audience is not there. But if you practice in the real world, not the world in which psychiatrists and philosophers live, in the real world, people mistake psychogenic for faking. And in fact, I was watching TV last week and I happened to stumble on the untold stories of the ER and they had a case of a pseudo-seizure. I don't know if they were lucky enough to see it. They induced with saline, by the way. Allegedly that was accidental. The doctor didn't know. They gave him a saline syringe by mistake. That was the story. But anyway, in retrospect, he said, well that's helpful. There was a mistake, but it's helpful. That means that these are pseudo-seizures and I'm going to explain it to the patient. He goes to the patient and he explains to them that you are faking your seizures. This is on the TV show, which I assume this doctor represents the authority. This is the guy who nailed it. Good doctor. Even he thinks that meant faking. So that's that kind of misunderstanding and basically an accusation, which is what faking is, is unethical. Now I'll give you my favorite unethical thing in the world of epilepsy and that is the fact that the mental health professionals are not helpful. This is a psychiatric disease. It's part of conversion disorder or now called something else, somatic symptom disorder or functional disorder. I don't love that term. Regardless of what it's called, it's in the DSM and I didn't put it in there. It's there because it's a psychiatric disease. It's not dermatology and it's not gynecology. It is psychiatry. And the problem is that the psychiatry and psychology community are showing very little interest in this. And I presented this many times at BAPA. But I went to many meetings looking for research at the American Psychiatric Association. A huge organization, very powerful. They have a national meeting with thousands of psychiatrists running around and look at the proportion of research they have on this topic. Now that is unethical. By the way, the American Psychological Association. No, this is another BAPA meeting. So these are several samples. This is the most recent I went to. Then I stopped because they were not improving. 2012. Same thing. There is zero nothing. Look at the proportion. 300 pages, 509 abstracts. These are the number of abstracts. Research on this broad topic of somatic symptom or functional disorder. That's the research part. Here's the patient education part. This is from the AAPA. This is the last time I checked. Please go check tomorrow and prove me wrong. And now they have patient information on this. But I doubt it. This is the American Psychiatric Association. Patient information. Look at the topics. You find me something remotely related to somatization, somatophore, conversion, somatophore disorder, etc. There is nothing. This is the American Psychological Association and they are no better. So how the AAPAs can hide from this and let us neurologists who are not trained to deal with this patient for treatment. We can diagnose all right. But I can't do psychotherapy. I don't want to do psychotherapy. That is much more ethical than doing induction. And that is my view which you can read more in these articles that I think are supplied already. So I think there is deception but it is minimal and the benefits far outweigh the ethical objections which in my view are largely theoretical. Whereas the downsides of not getting a diagnosis are not theoretical. Those are very real and we see them everyday. Thank you very much. Hopefully I didn't go over quite inspiring and glad to know that you have a definite point of view. There were just a couple of places there I was wondering if you were actually going to say what you thought. I'll be back. Yes you will, I'm sure. And I have to say that the my undergraduate education, I was announced as a psychiatrist as you all know, but my undergraduate and master's degrees were in philosophy. So I attended a lot of philosophy classes. But will not ever identify very much with the APA. So you can swing away at the APA all you want. I have many of my own objections with both the American Psychiatric and the American Psychological. First getting into this I want to say thanks to Taz for asking me to participate. I'm delighted to be here. My wife today said why are you speaking on a topic, a neurology topic, although I understand treatment should be focused in psychiatry. And I said I'm not exactly sure, truthfully. I think I'm supposed to be like the color commentator. And she said, this is a quote, don't say anything outrageous. She said you just got the job. That would be with Christine and my what that's and the checks are clearing. Don't mess it up like you often do. So that's what she said. And also by way of confession, I'll say that until Taz asked me to participate in this panel, I have thought very little about psychogenic seizures, truthfully. I have one patient right now who I'm seeing psychiatrically because there's a multitude of problems, certainly some of which contribute to her psychogenic seizures. But I had not really given thought probably since medical school about how to make the diagnosis, distinguish the diagnosis and so on. So I say that as a confession that I have just come into thinking about this recently. The role of deception and other issues, even making diagnosis. And also, starting over the last week, I actually started doing a lot of reading about psychogenic seizures, deception, diagnosis, and so on. The reason it really started about a week ago is that's when the last class I taught in January ended and I was teaching 11 hours a week in class. Some of the students are here and can vouch for that. And so, as we're walking out of bioethics last Thursday, one of the other ethics teachers, Steve Brown, a radiologist at Children's Hospital, and I were walking out and he said, hey, I saw you on that poster, you know, how are you going to come down? What do you think? And I'm like, I don't, I don't know. He goes, come on. You know, you know what you're going to say, don't you? And I said, no, I honestly don't know. And so that, you know, as of a week ago, I didn't know where I was going to come down. I've since done a lot of reading on the topic. As I said, I have to give a shout out to Babu Kreeshlamurti, student last semester colleague at HMS, otherwise, for talking me off the ledge. We were on the phone and she didn't realize that I actually was standing on a window ledge thinking, if I just jump, I won't have to be here today. Somehow she got me right off that ledge. She's a neurologist, not a psychologist. I was not on a ledge for the record. And I also realized this is somewhat of a controversy in neurology. It's not as big as I had thought. I sort of ran by, you know, the extent of this controversy in neurology. Certainly, it sounds like it's a fairly debated issue for epileptologists and those working in the field otherwise. And so what I'm about to say, and I'll actually get to the substantive comments around now, I will offer these comments as a starting point for a dialogue. I actually philosophically believe, I mean, I'm not saying anything about philosophy, but one of my philosophical convictions is that there's any approaching truth on any particular issue. It has to come through dialogue as opposed to monologue. So I'll offer these as a starting thought about engaging in dialogue. The long story short is the more I read about deception and making diagnoses and thinking about my work with my own patients and I see a ton of patients, all adults for the most part, across the socioeconomic spectrum. I don't think that I can stand by and justify deception, even if it is a brief deception for, you know, that's going to be revealed in a pretty short order in this context. And even if there's debriefing and so on. Several general points. Absolutely, we would all agree, I think, that if we could get to an accurate diagnosis as quickly as possible of your psychogenic seizures or epileptic seizures, we would all agree that the quicker we get to that diagnosis, the better. I think that's just sort of a straight, probably a statement of fact. I hope it is. All other things being equal. Also, we heard the figure 78% of individuals with PNES receive anti-seizure medications at some point over the course of their treatment. That also very much scares me. I am exceedingly leery of pharmaceutical industry generally. I prescribe meds all of the time. I do it with trepidation and fear and respect for potential side effects. So the fact that people with PNES are receiving medications, presumably and possibly for long periods of time, I think that's a very bad thing. And anything we can reasonably do to decrease that would be also something good. But, and this gets to some of the comments just before. I feel like psychic pain is real and it has to be respected. And I don't think that to say that if someone is experiencing pain or feeling let down or feeling angry as a result of having been deceived. And again, deceived for a good reason. I don't want anyone to take any remark I make to say the deception is entirely unjustified or it's all about, you know, abusing the patient. It's nothing like that. I mean it's a difference of opinion, I think, about what is in the patient's best interest. But I just have to put out there as a psychiatrist that psychic pain is real. It's got to be respected. And if you want to put dollars and cents on it, major depression is probably one of the most expensive illnesses in this country in terms of not just its treatment but the indirect downstream costs. Miswork, doctors visits, you name it. So the cost of the medical system are actually quite huge for a lot of psychic medical illness. And the other thing is just for those of us who have sat with patients in, you know, great distress and pain, I've heard it more than once that psychiatric patients have said, you know, I don't have any outward sign of my psychiatric illness. Sometimes I just wish I could wear like an ace bandage around my head so that people would know something was wrong with me. People get a broken arm or they get they get to wear a cast. You know, there's nothing like that for us. So there's a lot of distress and it really, I think what that sentiment among some of my patients says is that it hurts when the psychiatric component is not recognized. I'll leave it at that. In the reading I did, and again I come into this quite recently, I have a couple of questions about the efficacy of the provocative techniques with or without the use of deception to state what I think is pretty straightforward. There is an overlap of patients who both have psychogenic seizures and epileptic seizures. The figure we heard was about 10 percent. And so if provocative techniques, again whether or not you're using deception, if provocative techniques actually cause seizure activity physically but there are no EEG findings, that certainly generally would confirm a diagnosis of psychogenic seizures. But confirming that diagnosis does not in any way rule out the possibility that the same individual might also have epileptic seizures. And so nailing one part of a diagnosis would be very important if we knew it were the only part. But if this is one of those individuals where they're having both types of seizure activity, honing in on one diagnosis is not enough in and of itself. The other thing is if provocative techniques do not produce convulsions in any single individual, then this obviously does not rule out that they might not have PNES. So in any provocative technique without saline injections and so on, if someone does have PNES they are not necessarily going to respond to the provocative techniques. One study I saw quoted and I have all the references buried because I thought if I'm sitting in front of a bunch of neurologists and I'm new to the topic, very new in fact, I'm going to make sure I've got references to support at least any statistical things I say. One study in 2006 found that of individuals known to have psychogenic seizures, 32% had no response when infused with saline. 32% no response. And so if we didn't know that they had already had already were diagnosed with psychogenic seizures, we might think that they don't have them, which would be false. Another study found that 40% of those with psychogenic seizures had no response to saline infusion. Some of the numbers I see quoted are lower than those, but regardless the point remains that the non-response rates can be high and in fact certainly complicate matters. And then the other thing is the high false positive rate. I'll say this. One study found 23% of those with psychogenic seizures had responses unlike their usual events. And if it's unlike the usual events you can't necessarily chalk it up to psychogenic seizure. Another researcher, this is a quote, the number of false positives in our group was too high. And yet another researcher said that because of the high false positive rates of these provocative techniques, a psychological evaluation might be more readily used to identify psychogenic seizures. In other words, let's drop the provocative techniques and go more along the psychiatric end of things to render the diagnosis. And then finally, I saw this study quoted at least once if not twice, I could not pull the original paper. So this is second hand up first hand. I tried several times. Google Scholar, the Harvard Libraries, I couldn't get it. But in a 1996 study, they said the most common reason for not employing provocative techniques in trying to make these determinations and diagnoses was not ethical concerns. It was lack of test reliability. So that was what they said was the biggest reason, at least in that survey in 1996, that provocative techniques were not being used. So that this I think speaks to efficacy and the ability to hone in on a diagnosis of several diagnoses. And in fact, I did see in one place that, you know, some individuals who had been deceived and receiving these technical provocative techniques, some had said, yes, it was okay once they were debriefed. But a couple of other studies said that the most common side effects of provocative techniques were dizziness, anger, and difficulty accepting the diagnosis. Along those, and you can, I think dizziness might be, they didn't, I don't recall if they said these were people who got saline infusions, but certainly people can get queasy when they see an ID line going in. Anger, I think, is probably pretty straightforward. A lot of people would be angry understandably if they feel like they had been deceived in some way. And also I think that the same idea follows with the difficulty accepting procedures. I would say, and actually I go a little further, I would say that if a particular study found that most patients are okay after the fact with having been deceived, that I would at least wonder about the study design. I would wonder about the questions that were asked, and I would wonder about the motivation of the authors of that study, because we all know that study design, the questions we ask, and our own motivations can certainly influence the findings that we get. And so that's just something I keep in mind when I would see anything that says, oh yes, most patients found it fine, or the conquerors. And then finally, the other thing I would say is, even if patients did in fact say, after the fact, yes, I'm fine that I was deceived, my feeling is that does not make it ethically or morally acceptable. I say this, I mean I could give about a thousand analogies, but a very obvious one is, I would wager you could ask women around the world in oppressive, either religious or political environments where they essentially are deprived of rights, and ask a lot of those women, are you okay, do you feel okay that your status is what it is, and you're not able to address in certain ways, leave the house at certain times, have jobs, get education, etc. And I would wager that a lot of women, I wouldn't say majority, I've never done the study, I wouldn't be surprised if a lot of women said, oh yeah, I'm fine with that. And I would have to come back and say in fact I think that's not quite right. So sometimes we're wrong about our own motivations and thoughts. I think one very reasonable aspect of Dr. Mimbaati's position is the inherent question that you're asking in the work, which is have we gone too far in trying to respect autonomy. In other words, should we have informed consent and autonomy be the most precious values, sort of, and utilitarian arguments be secondary, and I think your very strong position is, no, the utility of using these techniques is such that it outweighs, and it should outweigh, and it's in fact ethically advisable to have it outweigh concerns about patient autonomy. I'll just leave that out there right now, but I think that's one of the underlying difficulties, or at least the underlying differences that some might have if they're putting patient autonomy first, as opposed to what works and that, and if it works, obviously that also is in the patient's interest, but I'll just put that out there. I also can't help but think about patients, and patients who are coming in with psychogenic seizures, as in many many instances our patients are dramatically disempowered. There is a power dynamic at the moment. I would say any time a patient and a doctor are meeting, I think the doctors, you know, have the power, patients are somewhat disempowered. I even feel disempowered, believe it or not, I've been around these parts for a while. If I go to my primary care doctor, soon as I check in, they say sit in the waiting area, I'm at their mercy to an extent. I mean that's just to get him to see the doctor, much less what might happen when I go into the room. And if I'm feeling disempowered, I can imagine that a lot of our patients feel a lot of discrepancy between where they see themselves along these lines versus their doctors. Also many patients with psychogenic seizures have lots and lots of doctors appointments and just imagine, you know, one appointment after another, after another, where you are feeling like the doctors up here and I'm down there. And additionally, just as appears to be the case in psychiatry, there is a lot of stigma for patients with seizure disorders and or with psychogenic seizures. And it seems that a lot of patients can come to define themselves through their illness. And that's an added level of difficulty for patients. Given all these difficulties, they're being disempowered. I think adding deception on top of a treatment regimen is a little bit like piling on in football in the sense that, you know, these people are down. They definitely need our help. I know people want to offer help by getting the right diagnosis as quickly as possible. I just happen to think right now this isn't going to do it. And then the other thing is that a lot of the patients, and we got a little glimpse of this before, a lot of patients with pseudogenic seizures have trauma histories. They're predominantly female. Many of them were sexually abused when they were young. Often by someone they were likely supposed to be able to trust a family member, an adult neighbor, something like that. And additionally, most of my patients, one of my standard teaching lines is most of my patients have been told that they neither count nor matter. That's what the world has told them from the time they were born. And my response to that, an effort to counteract it to whatever small degree that might be possible, is to treat them with respect and actually, you know, sit across from them and be engaged with them and want to hear what they have to say. So, with that said, if we're thinking about a saline infusion, and I'm glad to hear they're not, they're definitely on the wane, let's say, but if you're talking about a saline infusion and the provocative technique in order to render a diagnosis, MD is going to be at least initially lying to the patient, or heavily obfuscated. The patient is, I mean, the doctor's going to be inserting a foreign object under the skin of the patient, and then after that, infusing a liquid. You don't have to be a Sigmund Freud or a heavy psychoanalytic type therapist to hear that in some ways that is recapitulating the trauma. And then if you, if once all of that is removed, and then you say, oh, yeah, by the way, I was, you know, for good reason, for your health, I was deceiving you, I don't see that. I think the more metaphorical implications can cause actual real trauma, not sort of philosophical trauma, not high in the sky trauma, but people who are dejected and may have difficulty engaging further with medical care. And even if there's no saline to the pain and suffering of the loss of the psychiatrist, or I'm sorry, the loss of the trust and the physician, I think also could be pretty large. So in terms of possible harms, I've said some. I think one harm for patients is the sense of, the further sense that he or she does not matter, because look, you know, I'm not even about being lied to by physicians, and they're the ones who are supposed to be telling me the truth. Anger and betrayal, traumatizing or retrauming, traumatizing the patient, the patient coming to not trust physicians. I think there's also a potential downstream effect, and the public not trusting physicians. If the public starts hearing, oh yeah, I go to a doctor's office and may or may not do these things to me, where they're deceiving me, where, you know, are you deceiving me when you tell me that one milligram of adamant is going to make me a little calmer when I give this talk, you know, or something like that. And then I think for physicians also, if we engage in deception, I think there's a certain amount of strain on us anytime we engage in lies, and there have been several times in my life, in my life, where I have engaged in sustained deception, and I'm not going into the details, but that that, and this isn't sustained, I understand it's short-lived, but it, being a deceiver is costly, it is difficult, and it exacts a toll on us, I'll just leave it that. And then finally, how would you even operationalize the position that it is okay to deceive patients? As a teacher, both of medical students and residents, one of my policies that I realized as I was, you know, thinking about this over last week is, is I say out loud to anyone who listens, including patients, my policy is not to lie to patients, and I've gotten there partly for their benefit, and partly for my benefit, but it's taken me years to actually start saying that out loud, and I've probably violated that twice, I'd say in the last decade, I don't remember the particulars, I think it was psychotic patients in emergency settings, where there's a little bit of danger involved, but that's about it. I'm going to finish in probably 90 seconds. I'll say this about certainty. Physicians in general, healthcare professionals in general, we really like certainty. Our teachers do not like it if we say we don't have the answer, and so we are really pushed hard to get the right answer. I actually wrote a paper, my first published paper in the medical peer reviewed literatures in 1991, runner up student paper in the pharaohs about certainty and medicine. I have reprints, so I know you're going to be burning down to ask for this, but it talked about the extent to which medicine really strives for certainty, and the fact is we often can't get it. Even when we think we have a diagnosis for certainty, there can be issues around the edges. This may not be one of them, but I want to put out here that we like certainty, and we also, as we heard, we like efficiency, but sometimes respecting patients' rights needs to be prioritized over those two things. So in conclusion, apart from practical concerns about both the need for and the efficacy of deception and the use of placebo, deceiving patients is wrong. It violates their autonomy and sets a bad precedent for physicians themselves and for medicine in general, and I'll stop there. Can I respond please? Okay, well I want to get the audience involved as much as we possibly can, but at least if you want to take the first one. I'm not a psychiatrist, I spoke to you about 12 seconds. So I will respond only to two points, the anger and the efficacy. The anger is a good point, but irrelevant, because they are equally angered with the diagnosis of psychogenic seizures without an induction, and every one of us who takes care of these patients all the time noticed. So the induction might add 5 percent of anger. So the anger is there with the diagnosis, not so much with induction. It might add a little bit, I'll bring you that. And then the issue about the efficacy, let's go back to your patient, Ms. W. Okay, it's been two days, I don't have a diagnosis. If I do an activation induction, not saline, your points are all valid for the saline. We both agree on that, but they're also completely invalid if you eliminate the saline, if we just do HIV and foot assimilation, and most of your arguments don't hold. Anyway, going back to Ms. W. I do an activation, we have a ventilation, foot assimilation, verbal suggestion. There are three possible outcomes, none of which to me are harmful. So to say that 30 percent of the time it doesn't work, that is true, we know that. So we do an activation and it reduces nothing. What have we lost? You did hyperventilation, foot assimilation, a little bit of verbal coaching, what's the side effect? Okay, it's a negative. We know the sensitivity isn't good, what is good is the specificity. If it induces an episode of this acquisition, go closer. So, now you can open the discussion. Who would do the induction on Ms. W? So, I'm going to try and capture a tweet that we got from Paul Ford at the Cleveland Clinic, who thinks about these issues a lot as well. But this is partly a question of my own, which is, I'm going to describe a potential way of inducing psychogenic seizures without deception, or if there is deception involved, we'll call it authorized deception. So it's not clear to me why one couldn't discuss the admission for epilepsy monitoring ahead of time, and talk in a very open way about the possibility of psychogenic seizures and epileptic seizures, and tell patients that one of the things that we're going to try and do is figure out whether these are psychogenic or not. And in order to do that, I'm going to give you various maneuvers, and maybe even medications, and maybe even IV infusions. And you're not always going to know which they are, and is that okay with you? I think doing it like that, if that worked, would at least reduce and maybe eliminate most of the concerns about deception. But first I'm curious about whether people's intuition is that that would work or not work. Would removing, you know, would be eliminating too much of the suggestion that this is going to work by authorizing deception? Barbara, I'd like to comment on that, because I was back in the day when we did, you know, when placebo injections were done, and I worked for Ed Rockville, and he felt it was deceptive, he'd never do it, and they worked much better, and nowadays we do, still do them, rarely. I do explain before they come in, I think that you have psychogenic seizures, this is the thing, I do it like you say it, and it really, I have to say, I don't think it works nearly as well, so I'm not getting that read, because I don't, when did you see, Ben, have you seen our rate of inducing a typical event using our hyperventilation? It's not nearly as good. I'm nearly out of literature says, and we're more, I'm very direct and honest, I tell our patients I'm going to tell you the truth, so I don't feel that deceptive feeling, I think we haven't done it that often, but, you know, your points, I listen to both of your points in life, right, isn't it? I don't think we should be accepted the patients because the one time I remember, it stands out in my mind, it's probably over 10 years ago, that I was able to get a typical event with an induction, and it may have been hyperventilation. The patient was upset afterwards, and she said, well, that was, you know, you, I've never had one reduced before, that's not my typical typical event, even though the family agreed it was a typical event. So it's interesting, I think that we're not as successful when we're completely open. But you went a little further than you mentioned, because you said the word psychogenic is from the get-go, what you're proposing, which I totally agree with, is that you say we go with an open mind, I don't know what your spells are, we're going to do some activation procedures to try to trigger something with an open, whereas you're right, if you suggest that this may be psychogenic, then the yield might go down, I don't know that for a time, but Susan, you do this. Yeah, so my problem with this is just going in this with the idea that this is deceptive, and I challenge anyone in this room to say that you can say with a hundred percent certainty that you know what the diagnosis is before you record the spells, and so if we do go into this with an open mind that you don't know, why would you be doing the MIDI or EG monitoring if we know what the patient already had? So yes, sometimes we highly suspect that the episodes are psychogenic, but even in those patients we may be surprised that they also have epileptic seizures, and so if we truly go into this with an open mind that we are going to take a fresh look, your comments about these patients having been abused not just by their trauma in the past, but by the medical profession in many cases, they're often treated very poorly, and their complaints are minimized, they come and you open, you know, you start to say I'm going to take a fresh look, and I tell the patients in the clinic before I do bring them to the hospital there are a bunch of things that can look like seizures, and I don't know which one of them you have, but they're certainly not responding to seizure medications, let's bring you in, we're going to do this, this, and this, we have protocols that are set up that patients you know get hyperventilation, get phonics stimulation if they haven't had them then by a specific time, and so the idea that you're, and that's all patients, whether you think they have epilepsy or non-epileptic events, everyone gets the same induction, and it's not like you walk in the room and you say all right in this five minute period I'm going to do something and expect you to have an event, you make rounds and you say okay today's hyperventilation day, you feel up for that? good you were sleep deprived last night you're much more likely to have an episode today, and then you leave and the tech comes in and they do the hyperventilation, I don't see that as deceptive, I do that for my epilepsy patients and my non-epilepsy patients or patients who I suspect to have epilepsy versus non-epileptic events, so going into this with the idea that we're deceiving, pretty supposed is that we already know what they have, which is a big issue or that we're morally compelled to say everything we're thinking at the moment and you can keep me thinking it, you're not sure, tell them when you can know that but you do agree that with IV there is deception absolutely, and I would never think that's pretty much a consensus so I'm very curious in anybody in the room, so I think a lot of epileptologists, and I'm curious if you would agree with this, are comfortable with hyperventilation and podic stimulation and sleep deprivation, the reason that I think we're comfortable with those maneuvers is that, you know, these are things that in theory provoke both epileptic seizures and psychogenic non-epileptic seizures, and when we present them, we present them in that way, we say, you know, these maneuvers that we're doing are known to trigger both epileptic seizures and psychogenic non-epileptic seizures, and we're going to try it with you and see what it produces and I don't find that deceptive given that all three of those modalities can bring about seizures, I have no problem with that at all and so that's a running attack well I don't think it's totally simple because I think oftentimes we go into those maneuvers with a suspicion of what it is and I think we're maybe, we might do them a little more aggressively, we might put a little more flair into our performance when we suspect PNES and I mean I don't think that's nothing I think there is a little bit of deceptiveness but I think most epileptologists certainly I feel comfortable with that level of minimal deception and I'm curious if it sounds like you don't really, I don't hear deception Oh, but maybe we can take another question. Actually can I ask everybody to speak very loudly because the people watching by a web stream have had to hear through that mic? Psychogenic non-epileptic seizures aren't one of a variety of paroxysmal movement disorders with or without dissociational loss of consciousness. Now is whatever you're describing which you know doing vortex simulation or hyperventilation right I mean there are certain seizures that are triggered by coated stimulation if you were to say this can trigger various different seizure types then you would be saying what you're doing you know because then you can open Pandora's box is anything you're doing in the clinic then therefore deception when you're listing a functional side entrainment of a tremor, resolution something else with distraction, a Hoover's maneuver using a tuning fork to test for midline splitting sensory loss is that not a deception and then you know and you know there are even more radical ways you could say wait a minute this clearly is a deception where you know from what you're describing that's not really a placebo response that's a bit of suggestion that some types of seizures can do this but there are other people who would advocate and it's in their literature for instance using very low dose Botox in the setting of functional dystonia and some some patients with a placebo response have complete resolution of a fixed dystonia I mean if you're talking about deception that really is deception because you're using a non-therapeutic dose of Botox for you know you know as a for a true start seeing if that will resolve what you think is a is a functional fixed dystonia but in non-therapeutic disease I don't really you know it brings into the whole question in terms of the whole diagnosis process of any functional disorder if you're saying that that that is deception because that's inherent in the way you diagnose them great somebody somebody did make that point I think it was wrong less than many years ago and it is similar to not that different from Hoover Mcnover and tuning forward and the black mirror for Diplopia Hi I'm a neurologist but when I went into the army they decided they needed psychiatrist so I was a psychiatrist with one year one month's medical school behind me I was assigned to a locked unit this is before lithium before just thorazine just came out and we had two tryptolines and there I am in this war and with full of really disturbed people and what to do guess what I did I got some paint Russians and I had the patients paint the war then it was seasonal so I had them plant the garden and then they started their own newspaper it was instinctive to me that I had to enhance their sense of their own self-worth no matter what was wrong with them and that was my first introduction to psychiatry at a point and almost changed fields but by then I had four children couldn't afford it so I have four children and can't afford it but the checks are clearing I have probably I have so much experience with functional disorders so I'm in the emergency room at metro west and I'm feeling hey I really know all this stuff I've been through the army and all that and there's just not me having obvious conversion and seizure and I stupidly said if this doesn't stop within the next few minutes we're going to have to do one of these painful spinal gaps then the guy stops easy jumped up and shoved it don't bastard you don't believe me any rare afternoon that's stopped the seizure you know this is before I had any idea about ethics I mean that was that was really very bad thing to do but I was naive and full of unreasonable confidence so I so I one day a I've got a call there's a there's a there's a woman who is in coma and I recognize her name and I knew it was pseudocoma I was pretty sure it turned out it was and here's a woman that was suspected of having quote temporal obscenes and went to the point of somebody found something wrong in an MRI and they did a brain operation and then unnecessary part of the temporal lobe and she wound up having epileptic seizures fast forward she comes she comes to see me and she has she's got a left hemiplegia she went into a motor vehicle accident and the ER doc says you're going to feel worse before you feel better so she wasn't moving her left arm for the longest time and I and she was she deteriorated she was in the hospital and I was asked to see her and I by that time had learned how to stroke a conversion symptom without sodium amatol we used to use sodium amatol all the time one day I said I don't need any of this all I have to do is get myself in the frame of mind that this person will recover no doubt and you know I could get over most of the symptoms one day I did it and make a long story short person killed themselves because I hadn't thought through the significance of a relief of a symptom that they needed in their life they needed this symptom you know this is acknowledging errors you know 40, 50 years ago so there's this woman in the unit and I know that it can be wrong to relieve what do I do I couldn't convince any psychiatry department in Boston everything I call every place will you take this lady I know this guy this woman has a conversion problem can you see a way to helping her nobody nobody would take her and and I'm frustrated I went into the unit closed the door and 15 minutes later her left hemiparous is cleared with suggestion and then I said please don't discharge her now that she's recovered she could look hard to herself make this judge her anyway I saw her later she was okay so there's danger in relieving symptoms is the reason why these people have symptoms and in the real world psychiatrists understandably don't want to take the responsibility neurologists don't want to take the responsibility what you need is to find people who are trained and certified or at least trained in both fields to take the responsibility and take and take charge of these patients whenever possible you know I'm comfortable in that because I have the experience but most people wouldn't be and that's what I wanted to say thank you sure yeah this isn't working I'm not a psychiatrist I'm not a neurologist so I want to say I admired Dr. Ben Bass's saying listen we need there are some situations that we would be able to much better diagnosis if we use deception in the extreme form of giving salient injection I admire you being able to say that publicly I also admire that you're in the trenches and you're in the real world but what I feel is that you're asking for dispensation that you feel is very legitimate and I can understand your argument but actually physicians are using that dispensation all over the place and we give you the dispensation to lie to patients we're endorsing the dispens- we know for example a 2008 survey published in BMJ Tilber first author that in the United States 50- it's a national randomized survey of 1,000 physicians or internists and half rheumatologists were asked do you ever give anything to the patient that you suggest is actually an active medication that you give for psychological purposes and the answer was 50% of those patients of those physicians were giving placebo most not not necessarily saline or sugar pills but actually medications that were sub that those that had no effect on their on their on their patients symptom pathology complaints the thing about the dispensation that you're saying to me is I really understand your anguish to help your patients I really feel it I know those things are incredible but the whole profession isn't at stake here and frankly too many physicians want dispensation to lie we know the medical doesn't have a great history around this and I think the idea of transparency and respect for person trumps beneficence in every situation if using the placebo effect which is very real from deception I mean if you look at the treatment and the mic I'm an epileptologist but if you look at the treatment and migraine the active treatments for you don't do any better than placebo so placebo is a very real effect and I don't see how it's deceiving to give someone something that you think is working by placebo effect as opposed to a by an active biological effect in fact I'd like to ask if you think any of you think it's ethical to stop a one of those seizures by giving IV saline for that patient's live would get IV at a van anyway is there really anything wrong with giving IV saline first to see if that stops the seizure to help confirm the diagnosis of pseudo-seizure so Dr. Benjamin you have a slide that I mentioned stopping it it was mentioned would actually ask the same question about it it was mentioned briefly I see a rare instance in which we will use IV saline and that is to relieve the patient when the pseudo-seizure is so convulsive psychogenic seizures when they go on for 20-30 minutes an hour and it becomes necessary to stop them to relieve the patient but also the nursing staff it becomes increasingly agitated so we will use it in that setting and that touches a little bit on what you said because now it becomes a treatment so this is one of the rare few cases where we will research to IV let's see why yes I don't love it but and again as I said before not only does it stop the thing if it does and if it doesn't there is no harm but if it does it adds in diagnostic argument once again in the diagnosis can be difficult yeah going back to your point and I'm glad you mentioned Mexico because I'm originally trained there in Mexico so first I wouldn't call placebo induction it would be a no-cevo induction because we would perform something that we don't reckon we do a lot of placebo treatment later and especially in those long serials that will actually assure us that the diagnosis and especially in a public hospital where we don't have too much access to the video monitor units because we give priorities and then we move to the utilitarian philosophical point of view and it actually can work here we have the luxury that we can worry about philosophical concerns and it's true but in another place where you can't do eG video sometimes that's your best diagnostic methods including for non-seizure symptoms movement disorders you mentioned or other psychogenic symptoms sometimes the placebo maneuver no, no, cibo as you correctly going out is your best diagnosis method they don't have eG video here in America we can worry about fibromyalgia and a philosophical problem in other parts of the world thank you so what one of the I have a question please does PDS ever occur while a patient is sleeping and if it does does it have any similarity to other psychiatric conditions which might occur during the sleeping state so it occurs from parent sleep where the patient looks asleep to a casual observer but not from eG sleep so one of the things you're doing EMU and the emotional monitoring unit is you're looking to see but then do begin during the parent sleep are the patient actually asleep or are you having a slow wave of sleep or are you not asleep seizure begins or are they actually waking up and then producing so to make another comment I was surprised that you didn't talk at all about utility of this and engaging patients in therapy and so I will often if somebody has an event that is brought on by some type of a suggestion that I will say clearly there's something that's in control of this it's not you this isn't you're not thinking it but there is the ability to influence this from external factors and so if we can identify what those factors are in your day to day life that may actually help to get control of this because it's very very hard to get patients to actually go and seek out the psychiatric care it's even harder to find it once they agree but to get the patients to be willing to engage in CBT or whatever psychotherapy your psychiatrist or psychotherapist works with so is that something that you find useful or you admire you for doing this I think you are playing psychiatrist and I don't want to play psychiatrist because I want psychiatrists to do their job but are you referring to psychiatric care or not doing psychiatric care but you're initiating the therapy you're venturing on psychiatric territory in Shaanis because I think one of the biggest problems I mean in you frail point specifically against a psychiatrist I would argue that we fail as neurologists because we make the diagnosis and we say Eric well like go see your psychiatrist and you know good luck don't bother making and I think that having a degree of overlap where we hand the patients over make sure that they're in good hands and give the patients a way to kind of fall back on the person who made the original diagnosis is incredibly important and I don't think we do a good enough job of that I'll say in my practice it came to chop the lions I work very closely with primary care docs and that's the one who referred the most recent case woman with PNPS to me I work closely with them I also work work closely with neurologists so much so that I have at least two of their cell phone numbers in my cell phone and you know we collaborate closely I agree but I still would like people to tell me to answer this very simple question that I don't have is the hiding of the mental health professions an oversight of a deliberate avoidance or am I wrong and it's neither but please enlighten me why are there no patient information material of the website why do they not do research on somatophore somatization and all this is how much money is there in researching PNPS as far as I'm concerned money drives the ADA and research to a very large extent what about the vision education that doesn't cost money as always we are just getting going we have some someone from that side well we so the people that are here have the opportunity to continue the discussion upstairs with food but is there beer there is no beer we you know we go past this and we can somehow arrange to find it I need a beer and so we do have to turn loose our people watching us by a webcast and we will be convening in room 447 upstairs excellent