Links to selected topics They are creating chronic mental patients who are classified as seriously mentally ill
Improved grievance procedure needed
The judge's decision is a very one-sided one
Family and friends should have the right to file a grievance too
They are creating chronic mental patients who are classified as seriously mentally ill
AHPR: I understand that you are very involved with mental health issues in Alaska. For the benefit of the readers, would you give us a sense of your professional interests with regards to the right of mental health consumers?
Gottstein: I am with the Law Project for Psychiatric Rights, known as PsychRights, and our mission is to mount a strategic litigation campaign against forced psychiatric drugging and electroshock. There is no forced electroshock in Alaska but there is in a lot of the rest of the United States. The basis of it is that there has been a story told that these psychiatric drugs are helpful to people and that they make people safer, both to themselves and others. Neither of those things is true; the same is true with respect to electroshock, but we focus on the drugs.
I do know people that find the drugs helpful, and I think they should have access to them. I think they should be told the truth about them including that there are other approaches that work far better, for many, than the drugs. But because of the drugs' lack of effectiveness for so many and the extreme harm that they cause, I just don't think that people should be forced to take them, and in fact, if the legal standards were followed, people would not be forced to take them.
The drugs are dramatically worsening outcomes for people. There are a couple of ways to look at it. Since the introduction of the so-called miracle drug, Thorazine, in 1954, the disability rate for people diagnosed with mental illness, where the disability is attributed to the person having a mental illness, has gone up six times on a per capita basis. And while not all of that is attributed to the drugs, most of it is. What happens is the drugs knock down the symptoms in the short term but in the long term they dramatically worsen the outcomes.
There is this program in Finland called Open Dialogue Approach that is seeing an 80 percent recovery rate of people who come in with psychosis. They use drugs selectively. They try and avoid using drugs. At the end of five years 80 percent of the people are basically on with their lives. Twenty percent are not, and it turns out that only 20 percent are on the drugs after the five years. I think maybe only 67 percent were ever given the drugs so they have found a way to help people through that without using them. By contrast, in the United States, the recovery rate is about 5 percent. It used to be much better before the drugs.
The other most dramatic piece of it is that people in the public mental health system diagnosed with serious mental illness have a 25-year shorter lifespan than the general population. A hundred years ago that wasn't true; people that were diagnosed with mental illness had normal lifespans. With the introduction of the first generation of neuroleptics like Thorazine in the 50s, the lifespan went down 10 to 15 years, and now it is 25 years. I think that's because people are being given multiple drugs and because the newer neuroleptics like Zyprexa, Risperdal, and Seroquel are actually more harmful to people than the older drugs.
AHPR: What does it mean to recover from mental illness?
Gottstein: There is a lot of discussion and controversy over what that means but to me it just means people are getting on with their lives: they are working, they are in school, they are in relationships, and they are not in the role of a mental patient basically.
AHPR: You also mentioned that the drugs are worsening outcomes. What does that mean?
Gottstein: Basically, they are creating chronic mental patients who are classified as seriously mentally ill. For example, it looks like 80 percent of the people who come in with psychosis -- that would be people diagnosed with schizophrenia or maybe the manic phase of bipolar disorder -- can get better. Instead we are seeing five percent get better. What we are seeing is that somewhere in the neighborhood of five percent of the people who take antidepressants have a manic reaction, and then they get diagnosed with bipolar disorder, and then they get put on the harder drugs, and they are actually told, "We unmasked your bipolar disorder." Then they go down that road to becoming chronic.
The same actually happens with the stimulants used to treat attention deficit hyperactivity disorder; somewhere in the five percent range have a manic reaction. You know, the drugs are speed. And then they get diagnosed with bipolar disorder, and then well, you go down that road. Rather than take people off the drug and see what happens, they just add more drugs. People who would otherwise just get through things are being turned into chronic mental patients and disabled. And that's why the disability rate has gone up six times.
AHPR: How does the medication shorten lifespan? Is increased suicide part of that?
Gottstein: It does increase the suicide rate but in addition to that the medications cause severe physical problems. The newer neuroleptics, especially, cause diabetes and that's a life-shortening disease. There is this idea that these drugs, the neurotransmitters, are focused on the brain but the vast majority of a person's neurotransmitters are in their intestines, and the drugs really mess up your digestive system and people die of intestinal blockages fairly commonly. What happens is they go into the emergency room or whatever, and up comes their psychiatric history, and they say, "Oh, it's all in your head," and off they go and die, and frankly, no one tends to care that much about it. The fact that people's lifespans are 25 years shorter and there is not a public outcry over that just shows how much society as a whole finds that to be an acceptable outcome.
The neuroleptics cause this condition called neuroleptic malignant syndrome or NMS. It basically causes muscle rigidity. And that is often fatal very quickly. The stimulants cause cardiovascular problems; the neuroleptics cause cardiovascular problems. There are physical problems caused by antidepressants also, and so they are all physically very harmful drugs.
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Improved grievance procedure needed
AHPR: Moving on to the current legislative session. How familiar are you with HB 214 Mental Health Patient Rights & Grievances?
Gottstein: I am fairly familiar with it.
AHPR: I am reading from Rep. Higgins' sponsor statement. In it, he says that the bill provides for three critical rights: to file a grievance, to have an advocate, and to get a timely response to that grievance. Do you agree that is basically what the bill is about?
Gottstein: Sure.
AHPR: Are there any preliminary thoughts you want to share before we go any further?
Gottstein: It is very interesting. I went to a hearing and there were a bunch of people testifying in favor of it and Providence and the state were absent from that meeting. And there were a lot of pretty heart-wrenching stories. And then there was another hearing a couple of weeks later where the establishment came in and they all testified against it. I thought that was pretty interesting. But the basic thrust of the opposition is that no one is filing grievances because everybody is happy there, which is just absurd because at API, the Alaska Psychiatric Institute, virtually everybody there is there against their will. The idea that people are happy is ridiculous.
So what happens is that people complain and they just ignore them. There are a lot of abuses that go on at the hospital. One, because they hide behind confidentiality, and so it's really hard for anybody outside to really investigate and find out what is happening, and the other is if someone complains, they are just very easily dismissed by saying, "Oh, that person's crazy and making it up." And so, that's what people are faced with. Sexual abuse is fairly common in these facilities. It is a place where staff can get away with it because they can just say that the patient is delusional. From my perspective, there really needs to be an improved grievance procedure and that's basically what the bill provides.
One of the things that I think should be in the bill is a provision that if someone appeals an adverse ruling, the state cannot go after that person for [its] attorneys' fees if the state wins. It is my experience that the state always tries to get attorneys' fees. These are generally very poverty-stricken people. As a lawyer you are supposed to tell your client that there is that possibility, and it makes people unwilling to pursue their rights because they are faced with the [possibility of having to pay the state's] attorneys' fees. That is one of the ways in which complaints are suppressed. I think that any bill like this really should have a provision that says that that part of the civil rules of procedure does not apply.
The public hadn't really had any knowledge of this until recently when Bella Hammond and Vic Fischer were hit with $1 million in attorneys' fees, and now people are aware of it. But it's been going on for years. I represented someone trying to get out from under a student loan and they went after him for attorneys' fees when we lost and it is my understanding that it is the policy of the attorney general's office to always do that. It's a way to bar the courthouse door from people. That is outrageous, in my mind.
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The judge's decision is a very one-sided one
AHPR: I would like to talk about a particular case, that of Bret Bohn. In preparation for our interview, I went back and I read supporting documents and listened to the audio files of committee meetings about HB 214. I saw that you testified on February 18. In your testimony, you said something to the effect that it was your observation that the Bret Bohn situation is not uncommon. How is the Bret Bohn case related to the provisions in HB 214?
Gottstein: First off, I don't think that HB 214 really deals with Bret's situation at all. Maybe if he was in the psych unit for a short period of time during that period ... but basically, Bret's situation is a guardianship situation. I think there is this almost automatic acceptance by the courts that whatever the state is saying is true and so people aren't really giving it a fair shake. The deck is really stacked against people.
There is this established relationship between Providence, Adult Protective Services, and the Office of Public Advocacy, known as OPA. So if Providence says, "We've got someone that is incompetent to make decisions and they are subject to harm," then Adult Protective Services will automatically come and try and get a guardianship, and then they try to get OPA to be the guardian even though the statute has OPA as the guardian of last resort. I think they are number seven on the list. First on the list is a person that is designated by the person for whom guardianship is sought, if they had made that designation. In Bret's case, he designated his parents, and the judge decided against honoring that. Okay, so you've got them coming in saying that OPA should be the guardian, and then they appoint OPA to be the attorney for Bret, now OPA is on both sides of the case. Then, a court visitor is appointed to supposedly give independent advice to the judge, and that court visitor is paid by OPA. So, just on the surface of it, it is a totally collusive process, and I think that is a big problem.
Then, these cases are confidential, so it is hard for the public to know what is going on. In the United States, we have this tradition of open courts. And that is supposed to be the norm; there is supposed to be a very good reason to close court proceedings. The Guardianship Statute says most everything in the file is supposed to be closed, but it also says the hearing shall be open or closed to the public as the respondent may elect. I am more familiar in the mental health commitment arena that has the same language. The public defender agency, who is appointed to represent the respondents, to my knowledge, never tells their clients that they have the right to have them open.
I think that some people have very good reasons not to want either type of proceeding open because there are potentially embarrassing things that are going to be brought out, and so if someone has a reputation to protect, especially mental health commitments, then okay. Other people want the world to know about it. And it is their right to have it open or closed to the public but they are never told that they have that right.
There is a procedure in the court to request to have a file opened, and I made that request to the court in the Bret Bohn case earlier this week. I have not heard back. I pointed out a number of things that would be really interesting to know about that case. What we know is that Brett was basically fine in October. Then he took Prednisone as prescribed. Prednisone is known to cause insomnia and is known to cause people to become psychotic. Apparently, that is what happened. He took the Prednisone and then he became psychotic, not sleeping for days and days and days. I have some personal experience with that. He went to the hospital and he was prescribed basically two sleeping drugs: Ambien and Ativan, both central nervous system depressants.
I asked a very experienced neurologist about that, and he really questioned that [approach] because that didn't help anything in terms of diagnosing what might be the problem; it was just basically symptomatic treatment. Then they sent him home and he started having seizures. So my sense of things is that, it seems a pretty good likelihood that the Prednisone caused his psychosis, and then the drugs that he was given in the emergency room caused the seizures.
So they go back to the hospital and Bret deteriorates very rapidly. And the parents say, "Hey, wait a minute. We want to stop this, and we have Bret's power of attorney." That is when Providence went to court to get the power of attorney suspended. There is a lot of stuff that goes on in these cases and not very much of it is public. There, the judge issued a decision on February 7 that somehow made its way onto the Internet, and it probably wasn't supposed to be public, and there are a lot of questions about it.
The judge says that Bret's mother said that she would rather Bret be dead than in an institution, that she wished she had shot him when she had the chance, and that kind of stuff, which really doesn't even sound believable, other than maybe a distraught parent saying distraught things that she didn't have any intention of doing. Then this lawyer, who was a family friend that they had hired, got concerned about it and resigned as their attorney, and she [the lawyer] reported these things that Bret's mother said. But the decision is very one-sided against Bret's parents, basically making them out to be crazy.
But a story in the Northern Light -- which is the University of Alaska Anchorage paper -- cites one of his friends, Erik Guzman, and what he reported supports what the parents are saying. And there is nothing in the judge's decision that mentions whether or not Erik Guzman testified. I talked this morning to Bret's mother, and I asked her if Erik Guzman had testified and she said that he did testify. Why isn't that in the court decision? It is all one-sided against the parents and so, I think there are a lot of questions that have been raised about this case and about what has happened to Brett, and I think it raises a lot of questions about the system. This is just the way things happen. The extraordinary thing about this case is that it has gotten any publicity.
The other thing that I find awful about what the judge did is he didn't even let Bret testify as to what he wanted. The doctor said he could not testify, he was unable to, and then the judge said he looked at some videos and said Bret had a flat affect, which basically means emotionless, and it didn't appear that he was exercising independent judgment. The flat affect was very likely caused by the drugs. And independent judgment: if he had brought Bret in and asked him questions, well, Bret either would or would not have been capable of expressing his opinions. Here they are taking away all of his rights from him on the grounds that he is not competent, and the judge did not even let him speak.
AHPR: I have to ask a question. If it is known that Prednisone causes psychosis, why didn't they start by taking him off Prednisone? It's probably too simplistic a question, and I apologize but I just don't understand.
Gottstein: It's actually a very good question. When I took Prednisone, I was supposed to take three pills for two days, and then two pills for two days, and then one pill for two days. They said you are not supposed to stop it abruptly. That is a problem. I don't know where he was on the Prednisone. It might not have been anything like that. I'm not that familiar with Prednisone. I do know, for example, in studies with antidepressants ... somebody is given an antidepressant and they become manic, and then they are taken off of the antidepressant, and the mania goes away, and they are given the antidepressant again and the mania comes back, and they are taken off of it again, and it goes away, that's really good evidence. It is called challenge-dechallenge-rechallenge.
There is this idea that these randomized controlled studies are the "gold standard" of research but they are basically often fraudulent. They are paid for by the drug companies and they are manipulated in all kinds of ways. So they are not necessarily really the best. But this happens a lot: people become manic on these drugs and rather than just take them off, they add drugs. It's really stupid. Prednisone may be different in that you are not just supposed to just stop it. And then I think people can kind of get in a vicious cycle, where psychosis maybe gets triggered and even if you are off the drug, you are kind of in a manic cycle. I don't know if that is what happened in this case.
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Family and friends should have the right to file a grievance too
AHPR: I admit that this interview has gone off in an entirely different direction than I had anticipated. When I read your testimony at the hearing for HB 214 and I read the letter of support for the bill written by Lorraine Lamoreaux I concluded, obviously incorrectly, that HB 214 was more related that it really is to Bret Bohn's situation.
Gottstein: HB 214 is specifically restricted to people in inpatient psychiatric facilities, and so to the extent that that is not true of Bret, then it doesn't apply. Does Bret even have the right to file a grievance when all of his rights have been taken away?
AHPR: That is a good question. What is the answer to that?
Gottstein: I think he probably does. Legally, he probably doesn't but as a practical matter maybe he does. The problem right now is it wouldn't go anywhere, they would ignore it.
AHPR: If HB 214 passed into law, would that give him the right to file a grievance? Or is he not considered in a psychiatric facility?
Gottstein: I don't know what his legal status is. His mother talked about him being on the fifth floor, which I think is the psychiatric unit at Providence. HB 214 refers to an inpatient psychiatric evaluation or treatment facility. So if Bret were in that category, then it would apply. If not, he wouldn't. I think that one of Ms. Lamoreaux's points was that not just a patient should be able to file a grievance but maybe family members or friends.
AHPR: What do you think about the possible outcome of HB 214? Do you think it will pass? Does it face an uphill battle?
Gottstein: Well, Faith Myers and her partner, Dorrance Collins, are very persistent and they have been working on this for a while. Maybe ten years ago now, they were lobbying for a bill that would allow a patient to choose the gender of a staff member to provide intimate care, and I didn't give them a prayer of getting that passed. API was against it. Basically, the whole state was against it. And they got that passed.
I think the sessions are so short now that just the mechanics of getting bills through is very hard. Here we are in the middle of the session and it is in the committee of first referral. My sense of the legislature now is virtually nothing gets done other than the budget because they just don't have the time to do it.
The testimony in the first hearing of HB 214 was really in support of it. But now with the opposition from officialdom, well, that obviously makes it harder.
AHPR: That was very interesting. Thank you for agreeing to participate in this interview.
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