Simon Wessely: ‘ECT is in my own advance directive’

Inara said:
Why should I trust any papers produced by psychologists/psychiatrists, knowing they cheat at least 90% of the time (at least in this area)? The PACE trial is a very prominent example. It showed no effect of CBT/GET. But they let it look like CBT/GET are wonderful, and they still promote that. Why is ECT different?
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Because there are objective measures of dosage difference and area of brain difference involved so that studies can be blinded. That makes them completely different from PACE.

There have also been sham controls.

I also think it very unlikely that psychiatrists have any vested interest in using ECT. It is very time intensive and expensive because of the expertise in anaesthesia needed. It does not prove anybody's theory. It does not make money for drug companies.

The psychiatry profession is divided into two sorts of people. There are those who like to carry on what Freud did - taking nonsense and patronising patients with 'psychotherapy', which is mostly a desire to force your personality on someone else. The there are those who use whatever means they can to restore seriously ill people to normality and work on the basis of evidence. These two groups can be seen arguing with each other throughout the psychiatric literature. In my experience they are pretty easy to tell apart. The first lot bullshit. The second lot are humble and empathetic.
 
I don't know if Coyne mentioned this study?
Electroconvulsive therapy treatment in patients with somatic symptom and related disorders
Abstract
Objective
Medically unexplained somatic complaints are highly prevalent, and lead to significant impairment and disability. The number of effective treatment modalities for somatic symptom and related disorders (SSDs) or somatoform disorders (SDs) remains limited. To date, there is no formal indication for electroconvulsive therapy (ECT) in SSD or SD. We report on the largest case series to date regarding the effectiveness of ECT in patients with SSD and SD.

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Methods
A retrospective chart review of all patients treated with an index course of ECT at the Neuropsychiatric Program at the University of British Columbia Hospital from 2000 to 2010 was conducted. The primary outcomes consisted of changes in pseudoneurologic symptoms, pain symptoms, cardiopulmonary symptoms, and gastrointestinal symptoms. Complaints were examined pre- and post-ECT.

Results
Twenty-eight participants were included in this study. Twenty-one participants received right unilateral ECT. Six received bifrontal ECT. One received bitemporal ECT. Eighteen of 21 participants reported improvement in pseudoneurologic symptoms; eleven of 14 participants reported improvement in pain symptoms; one participant reported improvement in cardiopulmonary symptoms; and one of two participants reported improvement in gastrointestinal symptoms. This paper discusses the putative mechanism of action of ECT in the treatment of SD/SSD.

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Conclusion
This retrospective study suggests that ECT could be included as part of the existing treatment for refractory SSD and SD, particularly in refractory cases with comorbid mood disorders.
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I wonder if it will end up being a treatment for MUS(?)
 
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There seems to be several things being mixed together in this thread. You cannot compare ECT as a final resort with CBT given as a first line treatment.

I have known people with varying levels of depression but only one who was treated with ECT. It was not offered to those who were still functioning even if it was very bad.

My friend was hospitalised with depression and was very low functioning. ECT was used as a last resort and it brought her back to life. twenty years later she had got on with her life and was very grateful for it.

I am severely affected by ME but not bedbound. I think it would have to be someone very severe before they tried ECT.

(Just a thought on another thing, but I always thought severe trauma caused problems because it changed the biochemical makeup of the brain, like severe sustained fear meaning the startle response being reset so chemicals are produced at a much lower level than before)
 
Sly Saint said:
slight irony; this article from 2006
The Camelford Hysteria: A Lesson for ECT?
http://www.psychiatrictimes.com/somatoform-disorder/camelford-hysteria-lesson-ect
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That is pretty weird. 'Complaints of persistent memory loss in otherwise well-functioning individuals after recovery from a psychiatric illness through ECT are best viewed as a conversion reaction or a somatoform disorder.'

That was certainly not what I was told when informed of the risks. After ECT my wife had quite extensive memory loss, both episodic and procedural. Both have mostly returned to normal but only after a period of years. In the months following ECT she asked me, for instance, how you use a tin opener to open a tin (she was 57). She had very little idea where anything was in her kitchen until she went around finding things anew. She lost memories of many past events such as holidays. We found various tricks for bringing them back - photos, linked incidents etc. and quite often after a few hours the memory would pop back if we had talked about it earlier. She still cannot remember quite a lot of episodes. If we discussed them at length they might come back but they are not there for her otherwise.

And she isn't the slightest bit bothered by any of this because she is glad to be well again. She took early retirement because her job as a radiologist required a vast encyclopedia of memory of different patterns on x-rays used for diagnosis. It was not that she did not want to work. We just thought it we would never be sure it would be safe for the patients.

From my perspective the excessive emotional objections to ECT have nothing to do with the sort of suggestibility that gets called hysteria. They are fed by popular prejudice and the media. The author of this piece seems to be risking adding to the popular view that all psychiatrists are liars!
 
Jonathan Edwards said:
From my perspective the excessive emotional objections to ECT have nothing to do with the sort of suggestibility that gets called hysteria
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Do you refer to objections here? Or which emotional objections do you mean? The authors of the Camelbak article?
 
Jonathan Edwards said:
Because there are objective measures of dosage difference and area of brain difference involved so that studies can be blinded. That makes them completely different from PACE.

There have also been sham controls.

...

The psychiatry profession is divided into two sorts of people. There are those who like to carry on what Freud did - taking nonsense and patronising patients with 'psychotherapy', which is mostly a desire to force your personality on someone else. The there are those who use whatever means they can to restore seriously ill people to normality and work on the basis of evidence. These two groups can be seen arguing with each other throughout the psychiatric literature. In my experience they are pretty easy to tell apart. The first lot bullshit. The second lot are humble and empathetic.
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Very encouraging to hear of the good ones. Sounds like there are psychiatrists who actually do understand and do good science. I wonder what they think of trials like PACE, and if they are even aware of it. And yes, I do appreciate we already have some of the good ones on board already.
 
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Jonathan Edwards said:
I was referring to people expressing the view that ECT is barbaric just because it sounds barbaric.
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Ok. Who was doing that? The authors in the articles I read I think didn't do it, did they? And people here neither. At least that was my impression. Or was it a general statement? I.e. you mean if people view ECT as barbaric because it sounds barbaric, that's what you call emotional?
 
Inara said:
Ok. Who was doing that? The authors in the articles I read I think didn't do it, did they? And people here neither. At least that was my impression. Or was it a general statement? I.e. you mean if people view ECT as barbaric because it sounds barbaric, that's what you call emotional?
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The guy writing the article about Camelford was complaining about people being anti-ECT so that ECT had a bad name. He suggested that it was due to people thinking they had lost memory when they hadn't. It seems to me much more to do with the sort of implication running through the Mental health Today piece - which seems to be imply that it is not something we would want psychiatrists to be able to give without patient permission. There certainly seem to be people here on the forum who have pretty strong views about how barbaric ECT is!

Lets' face it, amputation of an arm for a cancer is barbaric in a sense, so is mastectomy. We accept these treatments because they can save lives. ECT saves lives. But it is extremely common to hear people say it is a barbaric obsolete procedure that should not be allowed.
 
So, if ECT are effective, why aren't they applied more often? Why are people so cautious? What does the efficacy say about underlying pathological mechanisms? And how can we understand what ECT does in detail?
 
Jonathan Edwards said:
Lets' face it, amputation of an arm for a cancer is barbaric in a sense, so is mastectomy. We accept these treatments because they can save lives.
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People decide for themselves if they want such treatments, and this contributes to acceptance I think. For some people, just being alive is not everything, but having a life. Sadly, this is being dissolved slowly, at least in Germany, where certain laws make it possible in certain situations to force treatments upon people, like amputation, cancer therapy etc. We have to accept if people decide for or against certain treatments. I don't understand why that is a problem.

I really think ECT is difficult. If you decide to have an amputation, you make an active choice. You accept living without an arm for example. If someone makes this decision for you because you are in a terrible mental state (and you don't have a patient directive) - no matter why - even if the decision is done with the best intents, and you wake up, cured in the sense that this terrible mental state is gone, but you can't remember anything e.g., and you realize this isn't a state you can live with, this is a problem. This wasn't your choice.

It's really difficult, and I realize I have to think about it thoroughly, and I'll probably have to change my patient directive.
 
Jonathan Edwards said:
The psychiatry profession is divided into two sorts of people. There are those who like to carry on what Freud did - taking nonsense and patronising patients with 'psychotherapy', which is mostly a desire to force your personality on someone else. The there are those who use whatever means they can to restore seriously ill people to normality and work on the basis of evidence. These two groups can be seen arguing with each other throughout the psychiatric literature. In my experience they are pretty easy to tell apart. The first lot bullshit. The second lot are humble and empathetic.
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I think the reason why this gets emotionally loaded quickly is because we all have a lot of experience with those Freudian guys and would not want them to be in charge of anything serious ever.
The problem for patients is that it is impossible to tell which kind of person you will be dealing with before you interact with them, and even after that it is difficult to tell for a layperson (esp. with brainfog) whether or not treatment recommendations are appropriate.
When I first got sick my GP referred me to a psychiatrist who, as it turned out, wanted to prove to me that I do not have problems with concentration by treating me with an amphetamine-based drug used in ADHD patients. He initially lied about his intentions and let the cat out of the bag when I had a horrible reaction, laughed at me and said 'see, if you had problems with your concentration this would have helped you' (ignoring the possibility that the initial dosage may have been incorrect etc., I do not know how relevant this was but it is my understanding that stimulant dosages often have to be fine-tuned a bit - and also the possibility that I might actually be sick in absolutely any way at all since he did not do anything useful in terms of proper anamnesis or testing iirc). I shudder at the thought that this guy probably has the credentials necessary to get a job in one of those units where it is decided whether or not ECT is an appropriate treatment in any given circumstance, and this specific person isn't even in the bottom half of my bad experiences with people from his profession.

It seems to me to be completely on point to say that the emotional objections to (modern!) ECT are prejudice, but after all we (as patients) have been put through even by well-meaning medical professionals I feel that it is not wrong to doubt that we can trust the people working in psychiatry to only administer it when it is actually a good idea to do so.


Inara said:
People decide for themselves if they want such treatments, and this contributes to acceptance I think. For some people, just being alive is not everything, but having a life. Sadly, this is being dissolved slowly, at least in Germany, where certain laws make it possible in certain situations to force treatments upon people, like amputation, cancer therapy etc. We have to accept if people decide for or against certain treatments. I don't understand why that is a problem.

I really think ECT is difficult. If you decide to have an amputation, you make an active choice. You accept living without an arm for example. If someone makes this decision for you because you are in a terrible mental state (and you don't have a patient directive) - no matter why - even if the decision is done with the best intents, and you wake up, cured in the sense that this terrible mental state is gone, but you can't remember anything e.g., and you realize this isn't a state you can live with, this is a problem.
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The point here is that the patient in question will be incapable of making any decision for himself. The part about 'being alive is not as important as having a life' is exactly the point in favour of forcing ECT on someone who cannot make an informed decision anymore.

It is somewhat common practice to do what you think is best if you are operating on someone and it does happen that a doctor has to make decisions on what he thinks is best for the patient if waiting until the patient wakes up and rescheduling for another surgery looks to be more damaging than just making a call. When you cut people open you are sometimes surprised by what you find (I am told). Having an amputation is often enough not an active decision at all!

I do fully agree with you though that if someone does not want to go through with a specific treatment and makes this decision as a responsible adult it should not be forced upon them btw, the interesting parts here mostly arise when life forces you into a situation where that is simply not possible!


So I guess my larger point would be that it is important that the medical field is made up largely of people who are competent enough to do their jobs in a responsible and sensible manner. Sorry if I went off on a bit of a tangent, brain is not fully functional right now.
 
Jonathan Edwards said:
I have explained my experience of this in detail, @Inara.It was not in any way difficult. My wife no longer existed as a person. Maybe you have to experience that situation to understand.
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Here I was not critisizing you, @Jonathan Edwards. Please don't understand it like that.

I just wanted to say that this topic needs thinking from my side so that I can make my personal decision now, where I can make it. I also don't want to lay this burden on someone else, like my partner, because I know it would be difficult for him. I didn't know electroshocks still were used, therefore, maybe, it was not in my thoughts before. Personally, I don't think it's simple, but that is my personal view after this thread.

By the way, this also holds for other treatments like amputations, certain cancer therapies etc. But these are things I already thought about.
 
Philipp said:
I think the reason why this gets emotionally loaded
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I cannot agree the discussion here was emotionally loaded - that was not my impression. If this doesn't refer to people here - but @Jonathan Edwards already said it does in part - why is it said? If it is referred to people here, it suggests that people with a different opinion are emotional, which is problematic for obvious reasons.
 
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Philipp said:
the interesting parts here mostly arise when life forces you into a situation where that is simply not possible!
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I agree widely with your post @Philipp. And what say here is the problem. Therefore I have a patient directive. I have thought about what I think I can bear and what not, and my will is pretty clear, so it shouldn't be difficult to make a spontaneous decision for or against a certain treatment.

With the exception of ECT. There will be lots of thinking.

Philipp said:
So I guess my larger point would be that it is important that the medical field is made up largely of people who are competent enough to do their jobs in a responsible and sensible manner. Sorry if I went off on a bit of a tangent, brain is not fully functional right now.
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Yes, I agree, but how can you achieve this practically?
 
Inara said:
I cannot agree the discussion here was emotionally loaded - that was not my impression. If this doesn't refer to people here - but @Jonathan Edwards already said it does in part - why is it said? If it is referred to people here, it suggests that people with a different opinion are emotional, which is problematic for obvious reasons.
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I did not necessarily refer to the discussion in this thread with my 'emotionally loaded'-comment, but the reaction to ECT in general. This is brought up repeatedly because it is hard to see why else you would be against using it when it is actually the appropriate (and usually, only available) treatment.
I personally don't get why you wouldn't want your circuits fried if you would likely be a vegetable for the rest of your days anyways if you didn't try that. Unless you are operating from a different information base (which you are always welcome to present!) I do not see how you can form a different opinion here, so your objections do seem to be driven either by emotion or a set of values that are different from mine.
That doesn't infer you are not being rational because your opinion is different from mine, it just means I really cannot see how you would rationally be able to form a different opinion and therefore you need to explain your thought process to me so I can decide whether to agree or disagree with it!
 
Inara said:
I just wanted to say that this topic needs thinking from my side so that I can make my personal decision now, where I can make it. I also don't want to lay this burden on someone else, like my partner, because I know it would be difficult for him. I didn't know electroshocks still were used, therefore, maybe, it was not in my thoughts before. Personally, I don't think it's simple, but that is my personal view after this thread.
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This is not aimed at you specifically @Inara. I'm using the word you in a general sense here.

Of course one of the problems in deciding things like this in advance is that:

1) by the time you needed it (if you ever did) that the process might have been further refined and honed to give optimum benefit vs side effect.

2) you don't necessarily know what it would feel like as a patient, if you haven't had any experience of such mental states before. Is it distressing for you? For your loved ones? Would it literally be better, in some cases, to die rather than try it?

3) how distressing might it be for loved ones to be held to a directive that prohibits a more refined treatment, when it means that the patient might have to spend significant amounts of their time, if not the rest of their life, on a psych ward?
 
Another thing that strikes me from some of the links posted is that some people voluntarily have more ECT, as a maintenance dose.

Now, I'm sure that even if they were incapable of making the decisions for themselves the first time around, they presumably are giving conscious and informed consent to the maintenance treatment.

So, presumably, they felt so awful that the relief brought by the treatment makes it worth it.

Or the treatment wasn't as traumatic as our gut reaction assumes it must be.

Or a combination of both.
 
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