Please don’t worry. This is not going to be some kind of dumb rant against pills or the pharmaceutical industry. I just want to show you how what was considered normal in psychiatric health care 50 years ago, is seen a very different light by us today.
And by implication, how what we now think is normal, may be considered weird 50 years from now.
50 years ago, a popular tranquilizer was the drug Nembutal. It is based on pentobarbital, which as a barbiturate is rather dangerous. It’s not only addictive, easily creating drug-dependency. An actual overdose will simply be lethal. It has long remained in use as a strong tranquilizer, for example to reduce anxiety. But in modern psychiatry it has largely been replaced by other, hopefully less dangerous drugs. It is now mainly being used by veterinarians: for euthanizing animals.
In the USA, it has recently also been used as a simple way to carry out executions, replacing more complex mixtures of lethal drugs. In March 2011, Ohio prison inmate Johnnie Baston was the first to be executed by a single-drug dose of pentobarbital (see this Washington Post article). In July 2011, when already 18 people had been executed in this way, the Danish pentobarbital producer Lundbeck announced that it would no longer accept the use of its drug for execution purposes (see this Guardian article).
Flashback to 50 years ago. Here is an old advertisement that shows how back then, this same drug was promoted (and used) for psychiatric treatment of children:
For us today, this advertisement looks just weird. Not just because it presents the use of Nembutal to tranquilize children as something normal. It also looks weird by itself.
It shows a friendly slogan “when gentleness is important”. But this strangely conflicts with the crude, caricatural, in modern eyes almost disrespectful and disturbing way the child is depicted in the image. The kid looks like a little Frankenstein, a little monster. One look at him and we’re supposed to understand immediately why, yes of course, this boy does need a gentle Nembutal treatment, real quick, before he… (fill in your darkest Dracula fantasies here).
I’ll happily leave all other interpretations of this weird advertisement to you.
Now, instead of flashing back 50 years, flash forward, to 50 years from now. To 2062. How will people then look back to today’s practices of easily diagnosing unruly, not-concentrated children as “ADHD” and sedating them with medication, instead of taking adequate educational steps?
Frankly – Frankensteinly – I think those people in the future will find this way of treating children just as unbelievable and weird, as we find this old Nembutal advertisement.
We can repeat this same time-travel thought experiment for many other primitive practices within psychiatry, such as the still far too easy and liberal use of electroshocks. What will people in 2062 think of the fact that I, a depression patient, got electroshocks even after I got a heart failure during one of those treatments?
There are many more examples of still-existing psychiatric primitiveness: again, I’ll leave this little bit of thinking to you.
The point is: if we can clearly guess how 50 years from now people will find us weird, then why should we wait those 50 more years before making some simple, obvious improvements in psychiatry? Let’s be a little more critical about what we’re doing today! Let’s work a little harder! Let that future begin now!
• note: OK. I admit, maybe this whole demonstration here was a little on the demagogic side. But in essence, I don’t think it’s untrue.
Maybe I’m just too impatient? And now I come to think of that, would this impatience be one more cause of depression?
This portrait here is not Emily Autumn, who is filling the rest of this post.
First, here is my daughter Sophie (portrayed by my friend Frans-the-painter). She is a nearly-graduated expert on medieval literature and manuscripts. She also writes, she makes beautiful drawings, she moderates a sci-fi/fantasy role playing game, she sings in a choir that brings everything from Yiddishe folk songs to Haydn church masses, she worked in a leather shop, she’s into custom-built computers, she cooks great meals, and she is a keen follower of alternative music and culture.
Don’t tell me I should be proud of my daughter: she does it all on her own power.
She’s the one who told me about Emily Autumn.
Emily Autumn is a unique, very flamboyant, punky-style American singer who has many dedicated followers. Having bipolar depression, she was hospitalized after a suicide attempt some years ago, and one of the recurring themes in her music is psychiatry, or maybe I should say anti-psychiatry. You can find Emily Autumn’s website here: The Asylum.
Last month Sophie was at one of Emily Autumn’s live concerts, and she was very impressed by its atmosphere, Autumn’s performance, the crazily dressed fans and the music itself. One of the songs Sophie told me about was Take the Pill, a kind of anti-psychiatric pamphlet translated into a bitter, sarcastic song. After listening to it, I felt compelled to comment on the actual text Autumn is singing here.
As you know my own stance is not rigidly anti-psychiatry, but not pro-psychiatry either: I would describe myself as “a fair critic”. I will never state that all psychiatry is by definition Evil: in some cases, professional therapy (including pills) can perhaps do some good, or even be needed – temporarily – to prevent a disaster. But I also do know very well that psychiatry is way too much commercialized, pushing extreme solutions onto people who might do better without, often resulting in a kind of counter-productive overkill.
I am convinced that in today’s situation, let’s say 80% of all habitual antidepressant users would do better without. The remaining 20% might benefit from them.
In my own past, pills and electroshocks may have helped me incidentally (perhaps preventing more suicide attempts than the two I survived). But they never helped me in a structural way. Against the advice of some psychiatrists, I stopped having electroshocks five years ago, and last year stopped taking pills altogether. On the whole, I feel better for it. But I know that what applies to me, is not necessarily true for anyone else: we’re all different.
I will use my own experiences here as a base for commenting on Emily Autumn’s Take the Pill song: giving you the complete lyrics, mixed with my own comments where I see fit. But first, here is my unique patented Depression Music Player so you can listen to Emily herself. Click the “Play” button to hear her singing Take the Pill:
take the pill that makes you weaker
take the pill that makes you sick
comment: Taken literally, this is sometimes true. Nasty side effects can hit some of us. But there also are people who don’t really notice any side effects.
…take the pill or you’ll be sorry
comment: Yes, this is what psychiatrists often suggest. What they mean is (if you’re in very bad shape at least, if you are suicidal) that if you don’t take medication you may not live to regret your decision to refuse them.
Maybe some psychiatrists do indeed use this suggestion as a kind of threat, to persuade you with force. But the same suggestion can of course also mean they are genuinely worried about you.
…take this bloody pill and make it quick
take the pill that kills your sex drive
comment: Yes, this is one of the most frequent side effects, experienced by many of us. Losing sexual urges and satisfaction affects not only yourself but also your relations with others; this can make your depression much worse.
Somehow, psychiatrists tend to grossly underestimate the importance of this. They keep prescribing medication that has this effect even when there are alternative pills that do not have this effect.
One other thing: in some cases, it’s not the medication that killed the sex. Sometimes, it’s the depression itself that has this effect.
…take the pill that makes you cry
take the pill that burns your insides
take the pill that makes you want to die
comment: Yes, there are known cases of antidepressants generating suicidal impulses instead of reducing them. This does not happen often, but it is a potential danger. This is one of the many reasons why you should never take those pills without regular checks with a qualified psychiatrist, for as long as you use them.
…be careful what you say
today could be your day
you no longer rule your body
comment: Yes, sometimes this is how it feels: medication-induced numbness resulting in the feeling you no longer have control over yourself. For example, you are moving but it does not feel like you are moving: more like a zombie.
This does not happen to all of us but it does happen fairly often: and equally often, you will become fully aware of this effect only after you’ve stopped taking antidepressants.
…you no longer own those rights
you will wake up when we say so
you will sleep when we shut out the lights
enjoy your stay
‘cause you can’t run away
comment: I’ve been hospitalized in a locked ward a few times myself, and of course this is certainly not a pleasant experience. But I want to add a few footnotes here.
It’s obvious that personnel in such a ward want to sleep you regularly, in their own practical interest, and so you won’t disturb other patients, and also because regular sleep can give you more energy to fight your own depression. But I myself have never encountered a regimen of brutally enforced sleep.
In fact, some of the most nice and personal conversations I ever had with psychiatric nurses did occur when I got wandering through the ward in the middle of the night, ran into a night-shift nurse who had little to do at that time, and got into a long talk with her before going back to my bed.
The interesting background dilemma of using locked psychiatric wards is of course that two things conflict here: the patient’s right of freedom, and the patient’s right to be protected against his own self-destructive urges. These two things have to balanced against each other somehow.
I’ll admit that this balancing may not always happen properly or with enough care. On the other hand, if psychiatrists think there’s a serious risk you will run off and impulsively jump from a bridge, can you always blame them for temporarily locking you up rather than taking the risk?
As for the constant supervision, the control and lack of privacy in some institutions: my first suicide attempt was by hanging myself while hospitalized. If they hadn’t discovered me in time, I wouldn’t have been around now. Yes yes, I know, you don’t need to tell me you wouldn’t have missed me, either… ;-)
…get back in line, get back in line, get back in line
get back in line, get back in line, get back in line
comment: I’m not sure what exactly Emily means here. If “get back in line” means that people try to force psychiatric patients into some predefined mold, in standard “normal” behavior patterns, that is indeed wrong. To a slight extent, I’ve sometimes experienced that myself: when it happens, it’s usually because psychiatrists and nurses (out of lack-of-time, laziness or lack-of-involvement) try to go the quick and easy way. When your behavior in some way is just irritating to them.
But I must say I’ve also found often enough that people tried to accept and respect my own peculiarities. And believe me, I sometimes can be a little strange or oversensitive…
On the other hand if “get back in line” simply means making your behavior a little more social again, then I would say there’s little wrong with that. For example, if ward personnel try to involve you in some activities with fellow patients again, then in the long run that might make you feel better.
…you’ll be just fine
take the pill that keeps you quiet
take the pill that keeps you blind
comment: Yes. Sure. Blind. I really must agree here. The first time I was able to fully, candidly, clearly overview and analyze my own situation and my depression, was after I quit taking antidepressants. Not during the years I took them.
…take the pill that wipes your memory
comment: I agree again. And this is even more true when it comes to electroshocks: in my case, they wiped out and destroyed important parts of the hard disk within my head. I can, for example, since those shocks not remember a thing about the difficult birth of my daughter Sophie. And with those parts of my memory, parts of my life, parts of my former personality were also wiped out forever.
This is another very important side effect that may not happen to everyone, but once again an effect that when it happens has a huge impact, and that psychiatrists tend to grossly underestimate.
…take the pill that’s f*cking with your mind
that’s all you have to lose
best that you’re not procreating
best that you don’t multiply
better still, let’s sterilize you
comment: Come on Emily. Are you serious? This is something that only the Nazis did, back in the 1930s and 1940s. As far as I know, no one in psychiatry advocates or tries to sterilize psychiatric patients today. Maybe I’m naive, but I just can not believe this. Please correct me if I’m wrong. If this really happens somewhere, there’s reason for worldwide action and protest.
…take this pill, the doctor’s standing by
pull up your skirt
and yes, it’s going to hurt
comment: Taken literally: yes. Sometimes. A needle, for instance. That can be very unpleasant, but it does not always mean it is just bad. Last year I had to have a gall bladder operation; that did hurt more than anything psychiatrists ever did to me – more than electroshocks.
But the other side is, after a few months I had overcome the feverish and painful side effects of my gall bladder operation. After five years, the nasty side effects of the electroshocks are still bothering me: that damage will probably last forever.
…get back in line, get back in line, get back in line
get back in line, get back in line, get back in line
you’ll be just fine
don’t you wanna be sedated
don’t you want to ease this pain
if the pills are not effective
then we will electroshock your brain
comment: I’ve had about 110 electroshocks. Really. In the beginning I was so exceptionally depressive and suicidal that maybe, I’m not sure but maybe, the first few shocks actually helped saving my life. I don’t know. In my case, the problem was that therapists went on shocking me with regular intervals, for about three years, even when probably it wasn’t necessary anymore. A treatment-on-autopilot. That’s plainly dangerous and wrong.
In general, electroshock treatments are so radical that they should be given only as the very last resort option, and only with the patient’s express content, after giving ample information and discussing it with him in an open, honest way. If there still are places where people get shocked against their will, that practice should be stopped. Right now.
…we are not happy with your progress
you’re not yet considered sane
if these pills are not effective
we’ll electroshock your brain
don’t even think of spitting out
we know your tricks, we’re on to you
we will check underneath your tongue
comment: In principle, forced medication is just as bad as forced electroshocks. In practice, maybe we can imagine a few cases where psychiatrists might find arguments to defend such a practice, saying that it’s no big deal and – as a kind of short-term safety measure –in the patient’s own interest.
But I still would find it very dubious, something that ought not to happen. Personally: as far as I can remember, I myself was never forced to take pills. Lucky me?
…we know exactly what you’ll do
your accusations are a joke
your credibility is shot
just keep your eyes down and your mouth shut
that’s the only choice you’ve got
so you’re a doctor and i am just a crazy little girl
who would you believe?
comment: Yes, some psychiatrists, especially in institutions, tend to assume a paternalistic we-know-best attitude, not taking the patient seriously. That’s not just wrong: it also is counterproductive. It will make the patient only suspicious, and sometimes with good reason. It will get in the way of a positive therapy, hampering instead of helping. All therapies should be based in the first place on open and informative communication between therapist and patient: the latter should be listened to (and answered to) seriously.
I suspect in this respect I may have been a little lucky because of my background: even when I was totally immobilized and almost incommunicable by my depression, psychiatrists possibly recognized I was a PhD with a university research job: in other words, to some extent one of their own kind. I’ve often had the nagging feeling that just because of that, they took me a little more seriously than many other patients, even when I tried to interfere on behalf of some fellow patient. But everyone deserves to be taken equally seriously!
…well he’s a doctor and you are just a crazy f*cking bitch
who would you believe?
we’ve filled your prescription, you’ll never run out again
we’ve filled your prescription, the drugs are your only friend
comment: Hmm… I don’t know. When suicidal I sometimes had the feeling that death was my only friend, but I’ve never had the feeling that pills were my only friend. Nor do I remember therapists actually suggesting something like that to me.
But don’t worry Emily, I do get your meaning, just like everyone else will. Psychiatrists sometimes like to suggest too easily that pills will solve everything. They won’t.
…we’ve filled your prescription, you’ll never run out again
we’ve filled your prescription, the drugs are your only friend
now, take the pill, take the pill, take the pill, take the pill
take the pill, take the pill, take the pill, take the pill
take the pill, take the pill, take the pill, take the pill
take the pill, take the pill, take the pill, take the pill
take it, take it, take it, take it
take it, take it, take it, take it
swallow, swallow, swallow, swallow
swallow, swallow, swallow, swallow
Emily Autumn is an artist, and artists exaggerate. They have to. Without exaggeration and sometimes even a little distortion, there would be no art. It’s exactly this that makes art stand out from plain, dull reality. It’s exactly this that makes art effective, impressing, and beautiful.
Art does not always have a message, but Emily’s art does have one. Apart from the necessary exaggeration, basically she has a true and important message. Your own interpretation may be different from mine, but I feel it boils down to this:
Psychiatry should respect people’s individuality and human dignity. Not, as still happens too often, ignore, overrule, or even destroy it.
• note to blog followers: Sorry for the double (automatic) post notification. By mistake I posted an unfinished draft here first, so I had to trash that and then post the right version. That’s why you got it mailed twice.
Since its introduction a year ago, the StayOnTop Mobile Electro-Shock Device has quickly become a tremendous success. Even our most optimistic business plan had not predicted that the “Mobishock” (as people nicknamed it) would become this popular! Mass-produced for us by Wanquan Fengkuang Inc. in Guangzhou, China, nearly half a million Mobishocks have been sold by now. ;-)
Wherever you look, in city buses, pubs, churches, college classrooms, on the street, everywhere you can now see severely depressed people pulling a Mobishock from their bag, attaching it, and quickly shocking themselves back to life. Within a minute, they’re sparkling, shining, and smiling again.
The Mobishock will certainly remain successful for years to come. It works absolutely great. But there were a few minor problems with it.
Several depressed customers began to complain about the Mobishock’s heaviness and bulk. And we have to admit it’s not really small, you always need to carry it around with you in a special bag. So we asked our engineers (all depressed people themselves, naturally) to develop an even better solution.
Guess what they came up with? Right: the unique, innovative…
StayOnTop Shocking iPad App!
Officially released last week, April 1st 2012, the StayOnTop Shocking App can now be downloaded at a nominal price from the Apple iPad App store. The only other thing you’ll need to do, is to order the two heavy-duty plugin cables. These come with special semi-rubberized suction headpads, so you won’t even need any gel.
The Shocking App offers you a very simple, friendly user interface. On the iPad screen, you just preselect your type of depression (“Incidental”, “Bipolar” or “Chronic”). Next you choose your desired shock level (“Moderate”, “Default” or “Extreme”). Then you hit “Go!” Of course the App will give you a loud warning beep if you forgot to properly attach the cables to your head.
The results are immediate and absolutely amazing. Your depression will be completely gone in a flash! But there is even more.
Thanks to the fact that the StayOnTop Shocking App generates electrical microbursts of extremely high voltages, in a few seconds it will also kill your iPad. So it does not just free you of your depression. It will also free you of the burden of your iPad addiction!
Another great feature of the Shocking App is that we minimized the sound nuisance for people near you. It is much less loud than the classic Mobishock. In fact, while you are shocking yourself, your friends will hear only a soft, almost pleasant sound. Click the Play button below to hear the Shocking App in action:
Here at StayOnTop, we’re very proud of this remarkable achievement. This is a superb product. We are very happy to serve the depressed community with this state-of-the-art software technology, and to make you really happy, too!
• note: We regret that, due to a patent conflict that keeps lingering on, for the moment the StayOnTop Shocking App does not yet come with any form of warranty.
I’ve decided to open a new category: Q&A (Questions and Answers). Here I will try to answer some of your questions, as brief as possible.
Question that was asked yesterday about electroshock therapy:
“Can ECT make me more depressed?”
Answer: No, usually it will not. Not by itself.
But indirectly it can contribute to depression, in two main ways:
(1) Psychologically: for some people, regular day-long hospital visits for intensive ECT treatment can be an extra tiring burden and increase your feeling that you’re a very serious case. This might make you feel more depressed.
(2) As a result of side effects: for a few people, serious effects can occur (like structural long-term memory loss) that may disrupt your daily life or even relationships. Eventually, this also can make you feel more depressed.
We all may react differently, in positive or in negative ways, so it’s hard to tell in advance what the end result will be in your particular case.
But if you think about having ECT as a last-resort treatment for depression, it makes sense to also consider the possibility of a negative end result.
Sometimes, the narrow outlook of what I’ll call “brain-focused psychiatry” exasperates me. Is depression just a matter of a few loose wires in the computer within our head? Do our feelings really got stuck just because of some faulty connection, some clog in the brain?
Sure, I won’t deny something like that can play a role, sometimes. In specific cases, a kind of malfunction in our head – something with synapses, hormones, chemicals, whatever – might be one part of a wider, complex set of problems. But there are still psychiatrists who entirely limit themselves to frantically trying to reconnect the wires, to locate that one special little button that will reboot the brain as if it were just a crashed computer.
They remind me of medieval alchemists – you know, those bearded eccentrics who stubbornly kept searching for the one magic formula that would turn stone into gold.
They also remind me of the old philosophers who, in the tradition of 17th century philosopher René Descartes (above), tried to understand and analyze and chart the human body and brain as some kind of complicated machine, with virtual cogs and wheels. Most philosophers have since long abandoned such a limited view, but some psychiatrists still seem to adhere to it.
They keep searching for that one broken cog, for that one loose wire that needs to be repaired. Maybe we should mint a new name for this kind of old-fashioned, narrow-minded psychiatry. Maybe we should call it “Steampunk Psychiatry” (if you don’t know what Steampunk is, see this Wikipedia page).
The most extreme example of Steampunk Psychiatry is of course ECT (electroshock therapy). What this amounts to, it is like taking your grandfather’s broken old pocket watch, and shaking it violently in the hope it will start running again. Actually this can work in a few cases. When I got ECT myself several years ago, perhaps it did help me a little. But it may cause only more damage just as well. (Let me prevent misunderstandings: this image here does not show ECT. It’s more Steampunk…)
Two things got me thinking about Steampunk Psychiatry today.
The first one is a research paper in the March 2012 issue of the British Journal of Psychiatry, about an experiment by Australian psychiatrists trying to treat depression with tDCS, Transcranial Direct Current Stimulation. For a readable review of the experiment, see here.
This tDCS can be considered a milder, more modern form of ECT. Unlike ECT, it is not based on the effect of electricity-induced convulsions: rather, it uses the effects of electricity itself. It involves stimulating specific parts of the brain with currents that are weak enough to make anesthesia unnecessary. As you can see here, tDCS equipment almost looks like iPod earplugs put in the wrong places. This is Steampunk Psychiatry taken to a new level of hi-tech.
According to the researchers, after a six weeks trial with 64 patients (where some got fake treatment to see the difference) they established that tDCS “is a safe and effective treatment for depression”. I’ll be no judge of that. But if ECT was like violently shaking your grandfather’s watch, we might say this is more like carefully poking into the broken watch with a tiny screwdriver. Perhaps it can indeed help some of us. What bothers me, is the complete lack of any wider perspective on the causes and nature of depression. Would an electric “screwdriver” really be the first thing we need?
This brings me to my second reason for thinking about Steampunk Psychiatry. My personal reason. Over the last weeks, my own depression has become much worse again. I won’t bother you with the nasty details. I know that I’ve been vulnerable to depression relapses for the last fifteen years anyway: I cannot pinpoint exactly why I’ve been so badly depressed several times. But I do also know that this time, clearly some external factors contribute to my depression.
To mention a few. My present network of friends may be too small for my emotional needs. I also face unexpected financial problems (an old mortgage loan I’m saddled with, has suddenly changed into a burden). For practical reasons, I’m also not happy with the place where I live today. And exactly because I had been getting better last year, I’ve now begun to miss the rewarding challenges of the university job I had to give up because of my depressions eight years ago. Also, I’ve still not been able to cut short my smoking habit, even though I know very well (cough, cough) that I really ought to quit smoking. Need I go on?
In short, my life is not what I would like it to be, I’m not at all happy with myself. And although I do of course try changing things, it’s unlikely that I can change everything to the better right now. Taken together, all these things add considerable weight to my already present (possibly innate) depression tendencies.
Would poking around in my brain, in the Steampunk way, be a solution here? Even if it might help a little, I doubt this would be a full and definitive solution. Any psychiatrist who would want to help me, would need to look at my life in a wider perspective: taking into account my inclinations, my habits, my practical problems, my mood swings, my family background, my activities, my environment and so on.
This does perhaps not apply to each of us, but I do think it applies to many of us.
The problem with Steampunk psychiatrists is not what they do. Maybe some of it can turn out useful. The problem with Steampunk psychiatrists is what they don’t do. Their narrow idea of depression is to just look into it as some kind of mechanical failure, and they forget too easily about all the rest.
Other psychiatrists, all those who have locked up themselves in different theoretical cages, often from their own perspectives make the same kind of mistake. The mistake of limitedness. The mistake of not looking beyond their own walls-of-theory, the cells that happen to confine them. This makes them too partial, too one-sided. Seeking the definitive solution in changing external circumstances. Or in adjusting the patient’s habits. In reprogramming emotional reactions. In furthering self-insight. You name it.
Those well-meaning therapists who think they can cure serious depression with the right pills, or with a long series of probing analytical talks, or with a program of healthy walks and a natural diet, or with some form of daily-life counseling, or with some form of meditative self-relaxation, are in fact all trying to give us their own kind of short-sighted Steampunk Psychiatry.
What I would like, is for psychiatrists to come out of their limited theoretical cells and for once take a look at the rest of the world. I would like them to stop viewing their otherwise oriented colleagues as marginal idiots, and to finally begin to work all together – systematically – to create a more integrated perspective on fighting depression. To recognize that each one of them, from the Steampunk tinkerer to the Freudian listener to the Socio-counselor to the Mindful type, may be a little bit right. And, sometimes, a little bit wrong.
Now if you’ll excuse me, I need to go. I need to do some urgent repairs. No I’m not thinking of my brain right now, that’s been taken care of already. If you want to know, I was thinking more of my heart. Who can tell me what’s broken in there?
Someone wanted to know what people can do to care for a family member who is getting ECT treatment (electroconvulsive therapy, electroshocks). Here is a list of things that I think may be important.
I hope you understand that this post is meant to be purely practical. It has nothing to do with the ongoing discussion about ECT. It is not meant to criticize, and certainly not to defend the use of ECT. For views on ECT, please see my “Shocking” posts series: (1) Waking Up, (2) Into the Void, (3) On Wheels and (4) Blast Past.
ECT will be proposed only if a patient is extremely depressed, and after all other options (therapies, medication) have failed. Unfortunately this often also means that the patient is already in such a bad state, that she may have trouble to make an objective, well-considered decision for or against accepting ECT treatment. She may react in a confused, too-impulsive or too-passive way instead of weighing arguments rationally.
So the first thing you’ll have to do, is to actively help her making the best decision. ECT may work in some cases, but it can also have serious side effects. Some psychiatrists tend to have a blind spot for the importance of side effects such as temporary or even persistent memory loss. Therefore, some things to do:
• Be well-informed. Collect reliable background information not just from internet and psychiatrists, but if possible also arrange a few talks to get first-hand info from one or two fellow-patients who’ve already had ECT treatment in the same institution.
Of course it’s best to do this together with the patient herself, if she’s up to it. If not, then summarize what you think is the most important info and share this with her, so she’ll be prepared in the best possible way to make her own decision.
• Insist on being present at all informative and/or preparatory discussions psychiatrists will have with the patient, so that whenever you notice she’s not quite capable of representing her own fears, hopes, wishes or interests, you will be able to participate (and if necessary, intervene) on her behalf.
Psychiatrists will not always like this, but you should insist. After all, she’s your family; you lived together with her through her preceding years of depression; in many respects you know her better than the psychiatrist does.
• When the psychiatrist says he sees ECT as the best or even the only option, let him clearly explain why. And even if people label the situation as “urgent”, it’s always better to make the good decision after a few weeks’ delay, than the wrong decision in a hurry or panic.
The very best thing you can do before going through, is (if you can afford it) to go with the patient herself and a full copy of her medical file to another hospital first, and ask a different psychiatrist for a second opinion. An ECT decision really is important enough to take that trouble.
• Finally, do not just make sure that the patient has been free enough to make her own decision. Once she has decided to opt for ECT, make sure this is a convinced decision, not one that still leaves her much in doubt. Serious doubt can lead to panic reversals later on.
So if you notice the patient keeps fretting about her decision, it’s better to arrange yet another talk with the psychiatrist to relieve her from those lingering doubts.
Before Actual ECT Treatment
What can you do in the days immediately before your family member gets an ECT treatment? This depends from whether she needs to go to the hospital for her ECT only (in which case she can arrive the evening or morning before, and leave the evening or the day after) or if the ECT will be given during a longer hospital stay. Obviously, in the latter case you can and need to do less. I’ll try to cover all.
• The most self-evident thing to do is of course reducing fear and nervousness. Especially before the very first ECT treatment, it is natural for the patient to be afraid of the unknown. So clearly, the best you can in do the last two days before ECT treatment, is to stay with her, distract her a little, reassure her, and if necessary try to calm her down.
After a few ECT treatments she’ll know what to expect, and probably be not too afraid anymore.
• If the patient is also using medication (antidepressants or otherwise) make sure that in the days before ECT, she adheres strictly to the prescribed doses and does not use extra medication (such as tranquilizers) without the ECT people knowing about it.
• Because ECT requires full anesthesia plus muscle relaxants every time, it is important that in the day before ECT the patient keeps to the eating-and-drinking restrictions as explained by the therapists.
A fairly usual restriction is not to eat anything during 12 hours preceding the ECT treatment. Personally I would go a little further, just to be sure, and avoid giving the patient heavy meals during the 24 hours before treatment.
• The hospital will have told you what things to bring along – items like nightwear. A practical addition I want to add here: if for seeing clearly the patient is dependent from her glasses, put her spare glasses in the overnight bag.
Putting on her glasses can sometimes help a patient to regain clarity in the somewhat dizzy hours right after ECT. I recommend bringing spare ones because occasionally, at that point it can be difficult to find back the original ones right away.
• We can assume psychiatrists and nurses will have done their home work properly, and will follow the rules for checking both the medical history and the patient herself.
Still, it won’t do harm to double-check in advance if they are indeed fully informed. You might warn the therapists explicitly to watch out for some things that can cause complications when overlooked:
(1) a brain lesion, recent concussion, respiratory problem, heart condition;
(2) loose or metal objects such as hearing aids, contact lenses, piercings.
Maybe I should explain here that one of my own 110 ECT treatments actually had to be aborted because of an acute heart complication. The next times they gave me ECT with a lower voltage; but I do think in my case it would have been safer if that lower voltage had been used right from the beginning.
• Normally the patient needs to be present in the hospital several hours before the actual ECT preparation begins. If possible bring her yourself and stay with her for a little while.
But do not argue with nurses or others when they tell you it’s time for you to leave. It’s better if your presence does not get in the way of medical routines (like a check-up). Your leaving in a casual way will support the patient’s feeling that she’s now in capable hands.
• The whole procedure (waiting, observations, checking, preparations, ECT, and post-ECT recovery) will take at least several hours. Often, the timing will be such that the patient needs to stay over at the hospital the night before. So if you live near enough to the hospital, just go home yourself. There’s nothing more you can do.
After ECT, the patient will need several hours to recover. Awakening from the anesthesia will happen within about an hour, but regaining full clarity – and physical stability – can in my own experience take much longer.
Especially in the first three hours or so, the patient may have a nasty headache or the numb feeling of having a brick in her head; she can also have neck or back or muscle pains as result of the convulsions induced by the ECT. In those first hours, nurses will regularly check in to keep tabs on her condition and recovery.
Within two hours, she’ll be at least drinking a cup of tea again; after seven to ten hours, she may be well enough to go home.
• Don’t go back to the hospital to see the patient before the prearranged time; this is pointless. She needs the time to recover quietly, gradually, without being dragged out of bed or into conversations too soon. Stick to the time you agreed to beforehand with the hospital people, or wait for a phone call.
• This one is important: do not let the patient go home by herself after an ECT treatment. If you cannot fetch her from the hospital, have someone else do it or charter a taxi.
Occasional waves of dizziness or unbalance may keep returning for one or two days after ECT; during that time the patient should absolutely not drive a car herself, and even walking through busy streets can be dangerous.
I remember how once I had no option but to use public transport to get home after an ECT treatment. I took a bus to the station and waited on the platform. Seeing a train coming in, I took a few steps forward, but I still was so unstable that I lost my balance and nearly fell in front of the arriving train. No doubt, had I fallen there, people would have labeled it “suicide”…
You understand, I really can not recommend this. I urge you, do try to organize the trips back home in a safer way.
• Back at home, make sure the patient gets a healthy mix of rest and stimulating activities. Just what we always need: so in fact, you need to do nothing special.
During the first week a few ECT patients may get slight headaches from loud music or watching TV. Others may complain about feeling some kind of numb dullness. With some patience, this kind of thing will gradually go away.
As far as I know, there are no objections against taking a few aspirins. Of course, letting someone take huge amounts of pain killers is never wise: so again, nothing special.
In short, I think the best care you can give to someone after ECT is to help her return to normal habits, to normal life within a few days.
• In the rare cases where in the weeks after an ECT treatment a serious, acute physical problem will not go away (such as recurring severe headaches) or if you think something is really wrong or abnormal, then do not hesitate to call the hospital for advice.
• There is one final thing where you as a family member can play an important role: helping both the patient and her psychiatrist to evaluate the effectiveness of the ECT treatment. As a family member you are most close to the patient. So you are in an excellent position to observe – in a more intense way than the psychiatrist, and in a more objective way than the patient herself – if this ECT really works. Can you see it does make a positive difference?
You also are in the best position to notice long-term ECT side effects. If you discover that the patient cannot really remember that wonderful vacation you took together on the Bahamas two years ago, then there is some cause for alarm.
Your contribution as observer is especially important in the case of an ongoing series of ECT treatments over a prolonged period. Suppose that after several months of ECT you feel the patient’s depressed mood and behavior have hardly changed, that basically her depression is just as serious as before. Suppose that the patient herself, when you ask her, keeps mumbling something like “I don’t really know”.
In that case it’s time to organize a new meeting with the psychiatrist, and to reconsider the whole thing. Then you can help the patient to do what we must do with any kind of therapy: weighing the costs against the benefits.
I hope this post, dull as it is, will be useful to some of us. If you think I forgot to note something important here, let me know.
May 25, 1965 –
Ethel du Pont (49, former wife of President Roosevelt's son Franklin Delano Roosevelt Jr.) hangs herself in her bathroom with the belt of her dressing gown. She had mentioned suicide several times before and was “under psychiatric care” for her depressions.
In the 1930s, as a wealthy heiress from the Du Pont family, she had been a well-known socialite. In 1937 her marriage with the President's son had been a major event, with the couple being featured on the cover of Time Magazine. After their divorce in 1949 she had married lawyer Benjamin Warren.
Following Ethel's suicide, the rich Du Pont family established the Harvard Medical School Ethel du Pont-Warren Fellowship Award to specifically support psychiatric research.