Patrice was misery incarnate. Unlike some of my depressed patients, who lived the proverbial life of quiet desperation, Patrice did not hide her suffering. She wept. She moaned. She regaled our walk-in clinic with a kind of biblical keening, which, understandably, attracted the attention of our clinic director. He took me aside one day and said, as gently as possible, “You really need to do something with that lady.” He was right, of course, and thus far I had done little to help Patrice, despite months of treatment.
Aside from being poor and dealing with some physical limitations, Patrice had no discernible cause for her chronic depression. Her marriage was good, and despite her straitened
circumstances, Patrice lived in a modest but comfortable home. Unlike many depressed patients, Patrice herself had no “narrative”— no internalized account of how she came to be depressed. Her mood disorder was as much a puzzle to her as to me — the kind of illness that, in the 1960s, would have been called “endogenous depression”— arising, rather mysteriously, from within.
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Thank you for this thoughtful and interesting story about the benefits of ECT for one of your patients. Clearly it sounds as if Patrice benefited from this treatment.
We’re agreed that the primary side effect of concern is not cognitive dysfunction after ECT, it is clearly with memory loss — as you noted. The problem isn’t just with the memory loss itself, it’s with the transparency of practitioners of ECT in explaining this side effect to potential ECT patients. While no practitioner can tell a patient whether they will be one of the people who experience “normal” memory loss or not, practitioners seem to consistently minimize this side effect (just as drug companies consistently minimize side effects of their medications).
Even into the 1980s, 1990s and today — the supposedly modern era of ECT practice — practitioners are still routinely either not telling patients about the possibility of extensive memory loss, or minimizing the potential impact of such memory loss. I cannot tell you how many times I’ve heard the story recounted to me by patients who said either their doctor didn’t really talk about memory loss as a side effect, or completely minimized it.
But you don’t have to believe anecdotal accounts. What little research has looked at this problem gives us warning signs about the retrograde amnesia effects of ECT. See most recently O’Connor et al (2008) and Fraser et al. (2008) for example. Sadly, the ECT research base is riddled with poorly designed studies (serious methodological issues), researcher bias (researchers who are investors in ECT device manufacturers), or studies with very small subject pools that are hard to generalize from. When taken as a whole, the research clearly indicates the fact that most people who undergo ECT experience retrograde amnesia (memory of past events before ECT took place). The only question that medical professionals who regularly perform ECT still cannot answer for an individual patient is — how bad will my particular memory loss be? Nobody knows.
I should also note that the effects of ECT for most people are relatively short-lasting. It is standard practice nowadays to have a patient regularly receive ECT treatments ad infinitum every 6 to 12 months.
Despite being a very old treatment for depression (and used for many other disorders as well), ECT medical devices have never undergone the standard FDA testing and approval process for both safety and efficacy. While there is now an effort underway to rectify this oversight, it is something people considering ECT should know and be aware of. ECT has not met the minimal FDA standards we set for modern medical devices or psychopharmalogical treatments.
There’s no argument that a person who is successfully treated for their depression is a person who is usually better off than one who is not successfully treated. But that’s not a legitimate argument for any treatment at any price. We have standards of medical care in the U.S. for a reason — to ensure safe and effective treatment is carried out — that the benefits of treatment outweigh the costs (side effects). ECT has simply never had to demonstrate that standard; I hope that changes in the next few years.
Most modern psychotherapy has a beginning, a middle, and an end, with far fewer side effects. I wonder if Patrice had seen a psychologist who specialized in treating treatment-resistant depression if she may have not experienced a similar outcome.
Last, I would point to this site for readers who may be interested in more information about memory loss and ECT:
http://www.ect.org/beyond-anecdotal-evidence-poster-session-at-nimh-conference/
Well, let me be at least one voice of dissention to this intervention being hailed so easily.
In my experience, patients with strongly comorbid, if not minimally diagnosed primary personality disorders as the cause to much of their symptomatology, I have found ECT is confounding if not outright disruptive to treatment. In my few but profoundly observed experiences with patients who were probably too quickly given ECT that had Axis 2 issues that complicated mood symptoms, they did not do well post ECT, at least for a while. So, I am glad this example had a positive ending for you, Dr Pies. But, I hope you might read this comment and pause to talk with other colleagues either who responsibly utilize ECT or have had to refer to providers who would cautiously screen for those who would maximally benefit from this intervention.
The ones I have interacted with seem to echo my perspective, to some degree at least.
Joel Hassman, MD
board certified psychiatrist
As long as patients are informed about the risks and allowed to make their own decisions free of threat or coercion then I have no problem with ECT. But, my experience is that the psychiatrist at least in my case did gloss over the side effects. He never even mentioned memory loss until I brought it up. To hear him tell it ECT is pure bliss.
Telling me that they had “tried everything” and “ECT was the last resort” and so on really does wonders for a patient’s mood, by the way. Saying stuff like that only made me feel more hopeless and despondent. I decided against ECT, found a different MHP, and I’m doing better.
Dr. Hassman, where have you been?
Anyway, ECT is obviously controversial and does not work for everyone. I would not consider it for myself but I am not Patrice – I am functioning, she was not – her life was a misery to say the very least. Sometimes drastic and difficult measures have to be considered and implemented. Really glad it worked, Dr.Pies.
As I will shortly be off on some extended travel, I did want to respond to those who took the time to comment on my case report—and to say thanks very much for your observations! I hope to have a more detailed and better-referenced response later, time and travel permitting.
First, I very much appreciate Dr. Grohol’s detailed and probing commentary, which does raise some important concerns regarding ECT; specifically, gaps in our knowledge about ECT’s risks, and deficiencies in our informed consent process. I think it’s useful, first, to distinguish between problems in the way ECT’s risks are communicated to potential candidates; and actual risks, as determined by objective, scientific methods. I do not doubt for a moment that many of Dr. Grohol’s patients have complained that they were not sufficiently informed regarding the memory problems that often occur after ECT. To investigate and verify these reports, one would want to speak with the psychiatrists in question, to hear their side of the story—and, in doubtful cases, to review their chart notes and informed consent procedures. Ironically, some patients who have had ECT may actually have been given detailed risk-benefit information prior to the procedure, but could not recall this afterward—possibly part of the “retrograde” amnesia Dr. Grohol discusses.
And, it is quite true that “nobody knows” how much retrograde amnesia a particular patient will have, after ECT—just as nobody knows how much post-operative pain a surgical patient will have, or whether she will develop a wound infection after surgery. The best we can do is to present approximate, aggregate percentages of side effects to patients—and that is true of every major medical procedure, from cancer chemotherapy to appendectomy.
And—while I do not wish to “stir the pot” with respect to psychotherapy’s risks–I do think it is fair to note that psychotherapy is far from risk-free, and that—in my experience—few psychotherapists present these risks to their clients/patients prior to treatment. Indeed, Dr. Grohol has a very informative blog on this issue (seehttp://psychcentral.com/blog/archives/2010/02/25/harmful-side-effects-of-psychotherapy).
To be sure: the risks of psychotherapy (e.g., regression, “acting out”, exacerbation of trauma-related emotions) are quite different from those of ECT, but there is every reason to insist on closer scrutiny and greater disclosure of risk, in both cases. As Professor Michael Sharpe, Psychological Medicine & Symptoms Research Group, University of Edinburgh, has noted: “We need a much more sophisticated view than ‘psychotherapy good; drug treatment bad’ if we are to effectively and safely improve the mental health of the population.” [http://www.eurekalert.org/pub_releases/2008-01/spu-psb011408.php]. The same may be said of psychotherapy and ECT.
I point this out only to put the risks of ECT in perspective—not to excuse the inexcusable. Indeed, reflecting on one of the comments above, it is inexcusable—in fact, it is malpractice—to withhold information regarding ECT’s potential for causing memory problems! That said, deficiencies in the informed consent process are not by themselves an indictment of ECT treatment itself.
With respect to whether a patient like Patrice might have benefitted from a more intensive form of psychotherapy, provided by an expert in psychotherapy for “treatment-resistant depression”: that is certainly possible. However, Patrice’s severe major depression had many features of what DSM-IV calls “melancholia”—including anhedonia (complete loss of pleasure) and psychomotor agitation—which does not usually respond well to psychotherapy, but does respond well to ECT [see W.A. Brown for review: Acta Psychiatr Scand Suppl. 2007;(433):125-9.].
I thank Dr. Hassman for raising the important question of personality disorder and its effect on ECT’s efficacy and complications. Unfortunately, there is quite limited research on this issue. However, a rigorous study by Feske et al (Am J Psychiatry 2004; 161:2073–2080) concluded that, “…the diagnosis of borderline personality disorder…is a predictor of poor acute response to ECT…[but diagnosis of] personality disorders other than borderline… does not have an effect on the immediate response to ECT.” However, this was a short-term study, and Dr. Hassman’s observations could be correct for some personality disordered patients.
But to be clear: the striking thing about Patrice was the absence of personality disorder features, once her severe depression had been adequately treated. This raises the issue of “pseudo-pathology of character” in the presence of profound mood disorder.
I hope to say more about the actual cognitive risks associated with ECT in subsequent postings, and provide some comments on the important issue, raised by Dr. Grohol, of FDA scrutiny. Thanks again for your postings. –Ron Pies MD
“I wonder if Patrice had seen a psychologist who specialized in treating treatment-resistant depression if she may have not experienced a similar outcome.”
That’s a good question! A skilled psychoanalyst should be pursued before ECT. Best for treating ‘treatment-resistant depression’. The research cited is insignificant since this condition is often researched from the pharmaceutical perspetive.
Are you a psychoanalyst, Dr. Pies? How sad.
Dr. Pies, just about everyone is ‘uncomfortable’ with the psychoanalytic approach! That’s one of the reasons why it works.
Having received a two courses of right unilateral ECT myself a few years back (both which were extremely successful) it was heart-warming to read this article. Not so much because of Patrice’s experience (as it seems very familiar) but for me to read what it is like for the Psychiatrist and the frustrations and transference that occur for them. So thank you for being so open in sharing your experience a long side Patrice’s.
@ Claire… yes, I also felt like it was the end of the world when my Psychiatrist mentioned ECT. After all if he is suggesting such extreme treatment, does that mean my Psychiatrist has given up on me? It felt like desperate times. I also worried about what happens if this “last resort” does not work? So, I hate that terminology “last resort”. Where is the ‘hope’ in that? No wonder people still run a mile when it is mentioned despite the on-going advancements in it. I do wish it had been my first resort, as then I would not have been severely depressed for months trialling antidepressants and missed the important bonding time with my new born baby.
I think for those who have experienced severe depression we understand that prescribing ‘psychotherapy’ at that stage is somewhat pointless. I have to wonder whether a Psychiatrist or Psychologist really understands SEVERE depression if they believe that psychotherapy is a better option than ECT for treatment resistant depression. There was no way I could think, concentrate, function, or contain myself enough to make therapy even an option let alone meaningful, when I was in that state. From my experience as a Clinician and patient, people best respond to therapy once the severe depression has lifted or is at least, more moderate. As best practise dictates ECT only be used to treat severe mental illness, psychotherapy is rarely even considered at that stage.
On saying all that, I agree a lot of Psychiatrists may underplay the possible retrograde memory loss resulting from ECT. True informed consent requires this total disclosure. If the consent form (which the patient should receive a copy of) also contained this information, in case there is any dispute or the retrograde memory loss relates directly to the events around the time of ECT (as it often does), there is a record of the total informed consent. For myself, cues jogged my memory loss. Keeping a journal or diary of events and conversations from around the time of ECT that I could refer back to, helped to fill the gaps in memory from around that time. Obviously, a lot of people won’t be in any state to do this themselves and may require family or nurses to assist them until they are able to partake themselves. But it forms an important part in memory recovery as well as answering questions for the patient arising later down the track.
I think what I’ve learned from my own experience is that there is no one size fits all answer for patients who struggle with major depression. Major depression is horrible and I definitely think people should have access to whatever options are available that might help, whether it’s ECT or changing to a different therapist or medication or whatever a patient is willing to try (with proper informed consent). My heart goes out to anyone who has struggled in this way.
I was diagnosed with severe recurrent major depression and labelled treatment resistant. I quit eating, I quit working, I went days without bathing, there were literally maggots crawling on the dishes in my sink which was disgusting, and I pretty much lay in bed with the blinds closed sleeping much of the time. While some would argue that it’s impossible for psychotherapy to help someone in this condition, I know from my own experience that it’s not impossible. I’m certainly not using my experience to say that’s what other people should do, as these are very personal and difficult decisions. I do think mental health professionals should be more willing to admit when they’re in over the heads and refer the patient elsewhere if what they’re doing isn’t working.
I would also like for MHP to stop using language like “last resort,” and so on. What I needed desperately was some hope, and reiterating how hopeless things were didn’t help. I’m not sure if making a goal of getting out of bed and brushing my teeth or walking outside to get the mail is considered psychotherapy as that’s how basic it was at the time, and although it was like pulling teeth for the therapist to get me to even do adl’s, I did improve and the depression did lift. This was not an instantaneous process and took a lot of time.
I’ve worked full time for several years since those horrible years when I was in and out of the psych hospital, and while I still struggle with depression, it’s never been as bad as it was during that time period (i.e. there are no longer maggots crawling on my dishes and I’m functional, etc). In my situation changing to a different mental health professional made all the difference. I also think my issues with depression were exacerbated by being overmedicated.
Dr. Pies,
Could you comment on how long the benefits of ECT lasted for Patrice? For patients who have needed maintenance ECT for a period of years, do you see more pronounced issues with memory loss or other cognitive impairment?
(I’m not anti-ECT, and I did consider it but was too scared to do it).
Many thanks to all who have written of their own experience with ECT. I truly value your wisdom! Re: Patrice, she maintained her remission for many months, with the aid of ongoing supportive psychotherapy and antidepressant medication. At the time I left that practice setting, she was doing well and had not needed more ECT.
Re: maintenance ECT (m-ECT) and cognitive issues, I have not researched that thoroughly, and I believe it is an under-studied area. I did find one small case series, below, that suggests that m-ECT can be done safely and effectively in very severe cases, without substantial memory problems–but clearly, larger, controlled studies are needed. (Note: most m-ECT treatment is provided less frequently than in the study cited below).
–Best, Ron Pies MD [signing off for a few days]
J ECT. 2007 Dec;23(4):274-7.
Long-term weekly continuation electroconvulsive therapy: a case series.
Zisselman MH, Rosenquist PB, Curlik SM.
Department of Psychiatry and Human Behavior, Jefferson Medical College, Philadelphia, PA 19141, USA. zisselmanm@einstein.edu
Comment in: J ECT. 2009 Sep;25(3):219-20.
Despite best efforts with continuation pharmacotherapy, many patients relapse after a successful course of electroconvulsive therapy (ECT). Although maintenance ECT can be a useful and cost-effective treatment modality, there is considerable heterogeneity on how it is used. The authors report a case series of 3 patients ages 68, 43, and 81 years with diagnosis of schizoaffective disorder, bipolar disorder, and major depression with psychotic features who required weekly ECT treatments for several years. All attempts to space treatments led to rapid decompensation. None of the patients experienced clinical evidence of any treatment related cognitive or physical morbidity.
I would agree with Dr Grohol that most ECT patients have some difficulty with memory immediately after ECT, but that most are not terrifically bothered by this, especially as more time passes since their last ECT session. I would also concede that there are rare individuals with
unpredictably severe and persistent memory problems, and that we do not know exactly how often this happens, but I would estimate it as less than 5% of patients. Getting a better estimate on the rate of severe persistent memory problems is an area deserving more study.
Perhaps the most important point to speak to is Dr Grohol’s comment that “We have standards of medical care in the U.S. for a reason — to ensure safe and effective treatment is carried out — that the benefits of treatment outweigh the costs (side effects). ECT has simply never had to demonstrate that standard; I hope that changes in the next few years.”
I agree that it is important to simultaneously weigh benefits while taking into account risks and adverse effects. I disagree that “ECT has
never had to demonstrate this standard”. My colleagues and I published a health-related quality of life (HRQOL) study of ECT using the SF-36, showing that in the first week after ECT, nearly 90% reported their health as improved
compared to pre-ECT. In this same sample, 78% still were reporting a net health improvement compared to pre-ECT. McCall WV, Prudic J,Olfson M, Sackeim H. Health-related quality of life following ECT in a large community sample. J Aff Dis 2006;90:269-274 )
Recognizing that ECT patients may not be accurately reporting the true level of improvement in HRQOL, I also examined the perception of the patients’ loved ones regarding whether the patient truly experience a net improvement in life-function IADLs and ADLs, and HRQOL. We found that patients and their loved showed high degree of agreement that there was a net benefit for health. (McCall WV, Dunn A, Rosenquist PB. Quality of life and function after
ECT. British J Psychiatry 2004;185:405-409) and (McCall WV, Dunn AG,Rosenquist P, Hughes D. Proxy validation of patient self-reports of ADL and IADL function before and after electroconvulsive therapy. J ECT 2002;18:74-79)
Although I recognize that depressed patients receiving ECT are different from depressed patients receiving medications, it is interesting to note that depressed inpatients receiving ECT had greater HRQOL improvement one year after discharge, as compared with depressed inpatient not receiving ECT. (McCall WV, Reboussin BA, Cohen W, Lawton P. Electroconvulsive therapy is associated with superior symptomatic and functional change in depressed patients after
psychiatric hospitalization. J Affective Disorders 2001;63:17-25)
In my opinion these studies, plus an additional similar study (manuscript in preparation) soon to be submitted for publication from Wake Forest, answer the question that ECT produces a net health benefit and that further studies are not required to satisfy Dr Grohol’s question about FDA device classification.
Finally, I am concerned about Dr Grohol’s recommendation for http://www.ect.org , as a source of information about ECT, as this is most-likely a Scientology-supported web site, and if not, then certainly is a highly biased, anti-psychiatry web site that can not be trusted to provide the best evidence-based advice.
I have to agree with the above post, I don’t believe the website http://www.ect.org to be a creditable website for information on ECT. There is no balance or recent research on the site. As a patient looking for information I found this website presented more opinions on selected (not well referenced) research, than the research itself.
The old conspiracy theories may have some bearing if you are from America but there is a body of knowledge independent of America which is not funded by ECT machine manufacturers that also confirms the efficacy of ECT. What is more exciting to me (as I already know that ECT is effective) is the on-going newer research out of other countries that is focused directly towards trying to limit or prevent any cognitive impairment that may result from ECT.
People like Dr. Chittaranjan Andrade and team in India have been doing some exciting research looking amongst other things, at the mechanisms underlying ECT-Induced Amnestic Deficits including the hypertensive surge.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2755145/
Also a few research studies out of Australia by Loo and team over recent years looking at ultrabrief RUL pulse ECT and the lesser cognitive effects resulting from that verses standard standard RUL ECT seem to confirm some of the American studies.
http://www.ncbi.nlm.nih.gov/pubmed/18752719?dopt=Abstract
What this means to me, is that Clinicians and academics acknowledge and take seriously the memory loss that may result from ECT and are actively trying to find ways to reduce this risk without having to deny people like myself a highly effective treatment option. It would be nice to think that one day memory loss is no longer an issue associated with ECT.
I am deeply indebted to both Dr. McCall–who has great expertise in both sleep disorders and ECT–and to Lisa Morrison, for her very brave and balanced advocacy in behalf of those with severe depression and other conditions responsive to ECT.
Re: Dr. Grohol’s call for FDA approval of ECT machines, I am not opposed to that idea, as I have confidence that modern ECT devices would pass both safety and efficacy standards. That said, we use many medications–including aspirin, which is capable of causing GI bleeds, and nearly all over-the-counter remedies–that have never received FDA “approval” or testing. I don’t offer this observation with any wish to condone such lack of scrutiny–merely to place the ECT/FDA issue in a broader perspective. In fact, I would like to see the over-stretched and under-funded FDA become more active in monitoring and testing medical devices and pharmaceuticals.
Thanks again to all who have written in!–Best, RP
Dr. McCall, I am really tired of people who make arguments against psychiatric practices being painted as scientologists. You all don’t like it when people say that all psychiatrists are drug lords. I think you need to practice what you preach about stereotype.
And to act like all studies by psychiatrists are truly non biased and not corrupted is simply not accurate. By the way, I don’t know if the studies you have provided links to are good studies or not but to act like because they are from mainstream medicine, therefore, they can be trusted is simply inaccurate.
And do you have a study showing that 90% of patients are still reporting the wonderful effect after a year? How many maintenance treatments does the average patient need?
You are guessing the percentage of folks with memory impairments is less than 5% but you really don’t know.
Dr. Pies, to compare aspirin to ECT regarding regulatory issues is like comparing the health benefits of hostess cupcakes to broccoli.
Dr. Grohol was right on target with everything he said about ECT.
Ann Smith
Just to avert more misunderstanding: I was not “comparing” ECT with aspirin or over the counter remedies! My point is simply that one can’t reach valid conclusions as to a medication’s or device’s safety on the basis of whether it has, or has not, received FDA “approval.” In fact, the FDA does not even do independent testing of medications or medical devices–though I believe it should! The FDA merely decides whether the labeling information (indications, side effects, etc) provided by a manufacturer are supported by the data the FDA has received from that same manufacturer…frankly, a pretty shaky system!
That said, I have heard a hundred times from numerous physicians that if aspirin had to clear modern FDA approval standards, it probably wouldn’t pass–it has too many dangerous side effects and risks!
I do hope we can now return to the real theme of my article: that for certain very severely depressed patients who have not responded to psychotherapy or medication, ECT may be both safe and effective…and even life-saving.
Ronald Pies MD
I’m curious about the <5% who suffered severe persistent memory problems. 5% of what? 5% of those who had only one treatment like Patrice? Those who had multiple treatments for years? Everyone lumped in together?
Every thing in life runs under the rule of random chance, that is 5% will not go as expected even under the most predictable outcomes of an experience.
And yet I constantly read the commentaries by people who argue vehemently that psychiatric interventions are 95% of the time offensive and destructive, and then using your 5% examples as the standards of response. Well, I speak out without hesitation nor fear of reprisal because I have been “around the block” for 17 years now, and what I see that could have the greatest likelihood of positively impacting on patients’ lives may not work even 75% of the time, but I would deny a person an opportunity to access a care intervention because 5% have a terrible outcome?
Dr Pies’ comment about aspirin is applicable, because it did not undergo the incredible scrutiny of health care assessment as it occurs for the most part today, so for every one of you ready to criticize ECT as a treatment option when you have taken aspirin with any regularity, well, it may be somewhat equivalent in the end, it just doesn’t fit your model.
Efficacy of an intervention is dependent on multiple factors: the state of the patient, the training and experience of the provider, the history of the specific intervening treatment, and believe it or not, the hope and faith of everyone involved in the treatment process: patient, doctor, family and invested supports, and other providers involved in the patient’s care.
Think about that next time you demean or downplay the importance of someone’s treatment. Belief is not just a placebo, framing is half or more the battle to regain or maintain health.
Have a nice holiday weekend upcoming!
Sorry, I didn’t do a good job of explaining my point.
I have a hard time with the aspirin comparison because while the downsides are certainly not ones to gloss over such as a GI bleed, I bet you would find a whole more horrific outcomes from ECT than you would from aspirin.
Interesting that none of the followup questions about statistical outcomes were answered.
It seems psychiatry wants us to shut up and accept the party line that everything is just dandy and perfect and any report of side effects should be denied as that is a crazy anti psychiatry scientologist running off at the mouth.
I’m sorry Ann but who here is denying ECT has side effects?
Also do you truly believe that all Psychiatrists and Psychiatry are keeping secerts with some kind of conspiracy around ECT? If so, that is in keeping with the beliefs of Scientology.
The fact that Dr. Pie has published your and my comments alongside esteemed Professionals within the area does not seem in keeping with such a claim.
I understand that for whatever reason you have strong “anti” ECT views however, it doesn’t change the fact that for people like myself it works REALLY WELL. It saved not only myself but also my family, and with FAR LESS side effects than the anti-depressant treatment I had been on.
It’s really about INFORMED CHOICE of ALL treatment options…. surely you wouldn’t deny people like myself that? If I had not of had a balance of information (yip, good and bad) and read the lastest independant evidence-based research, as well as talking to some people who had received ECT in RECENT years, I honestly wouldn’t have had the treatment due to the “fear” and “conspiracy” still surrounding it. Obviously, I’m glad I did!
Having had ECT only 6 weeks after begining treatment with medication for severe depression- which did not seem to help and it seems now made my SI worse ( I am the 2% that the ‘black box’ warning was written because of); While I was made aware of the risks vs benefits of treatment, to make an informed consent decision was truely out of my capability at that time- severely depressed and suicidal enough to be in a locked ward did not leave me with the normal decision making brain. My memory loss was profound and still 4 years after treatments I still suffer from memory loss of many things. I believe that ECT treatment should be discussed once a patient has had SOME improvement- in the pit of despair many agree to things they wouldn’t normally do. I never would reccomend ECT to anyone.
Just my opinion as one who has had severe side effects!
I received six ECT treatments back in 2005, My insturance Co. was charged $3,000 for each shock.
I was never told ECT was not FDA approved, I was never told ECT can cause permanent memory loss… which I have lost years of my past. I once considered my self “bright”, now learning is a huge challenge. I’m happy to hear the FDA will review ECT.
Did ECT save my life? Yes, but at what cost?
I still live with chronic depression day in day out! rTMS is FDA approved but my insurance would cover it, but covers unlimited ECT- what sense does that make?
Dr. Hassman writes “Every thing in life runs under the rule of random chance, that is 5% will not go as expected even under the most predictable outcomes of an experience.”
This is true, and I wasn’t being snarky in my question about that 5%. I’m trying to determine who is having the severe, persistent memory problems. Obviously, if a study is done that looks at people who have had multiple maintenance treatments for years and <5% had severe, persistent memory problems then that would be much more reassuring to me as a patient than if we were talking about people who had only a couple of treatments because that's not going to tell me anything about what might happen to me during maintenance. That's what I'm trying to make sense of.
I did appreciate the references regarding maintenance ECT that Dr. Pies referenced, as that helps me know what information is out there, what still is unknown, and so on.
My frustration as a patient was that when I asked about risks I was told "it's not like the movies" and had to listen to a rant about antipsychiatry folks and scientologists. As a patient, I'm not interested in all of that, I want to talk about what I might face. That's all, just informed consent.
I would like to thank the readers who have commented to date,and also wish to thank Dr. Grohol for “hosting” this important discussion. I do understand that this topic provokes a good deal of impassioned debate and controversy. I will close my comments, at least for the short-term, with a few additional findings and conclusions, in response to several readers’ questions.
I think the most important thing to understand with respect to ECT’s cognitive effects is that there is a tremendous amount of variability: some patients have practically no subjective complaints, after the first few weeks post-treatment; some have very serious complaints of memory gaps or other cognitive problems, even years after the procedure. The majority, however, do not show significant problems with memory or other mental functions when tested objectively, 6 months after a course of ECT [see Fraser et al, J ECT. 2008 Mar;24(1):10-7]. However, some may continue to report subjective difficulties. It is not clear why there is a “disconnect” between what can be detected on neuropsychological testing and what some patients report. But reports of memory problems should not be automatically attributed to “brain damage”—sometimes, these reports may reflect residual depression (as seems to be the case with several readers who commented), or may reflect some psychological (not neurological) problem.
It is hard to compare one person’s report with another’s, because the ECT techniques may differ greatly from person to person. When bilateral ECT is used (both sides of the brain receive the electrical stimulus); when the amount of current or number of sessions per week is high, patients tend to experience more cognitive problems. Old age and perhaps underlying differences in brain structure can also influence cognitive side effects of ECT. Interestingly, some studies actually find improvement in some cognitive functions, comparing pre- versus post-ECT, perhaps reflecting improvement in the patient’s depression—which is itself the cause of cognitive problems [see, e.g., Tielkes et al, Int J Geriatr Psychiatry. 2008 Aug;23(8):789-95]. Finally, I have checked with Dr. McCall, and the 5% figure he cited for patients with severe memory problems was his overall estimate, based on his clinical experience—he did not have that broken down according to number of sessions, maintenance versus single series, etc. So, clearly, we need more systematic research on this issue.
The issue of informed consent was also raised by several readers. Ironically, the very faculty needed to give informed consent is seriously eroded by severe depression—so we have a dilemma in some cases. However, the presence of depression itself does not automatically render a patient “incompetent” to make treatment decisions; many patients may still understand the risks and benefits of ECT, despite their impaired mental status when depressed. In very severe cases, or ones involving psychosis, a guardian may need to be appointed on an emergency basis. The guardian must then try to represent the patient’s best interests. It is important to understand that informed consent is not some “form” that a patient signs; it is an ongoing process that often requires “circling back”, reviewing information with the patient; providing video tapes and written information re: benefits and risks, etc. Some of these issues are discussed—along with the controversy regarding FDA regulation of ECT—in the article found at: http://pn.psychiatryonline.org/content/45/14/6.
I’ll close by saying that ECT should not be regarded as a “first” or a “last” resort. Rather, it is one option that may be extremely helpful for patients with very severe depression, and for whom psychotherapy or medication has either failed to produce improvement or is poorly tolerated. It is far from a perfect treatment, and it has its risks, just as any effective medical (or psychological) treatment does. For Patrice, as for many others, it was certainly life-restoring, if not life-saving.
Lisa,
I am glad ECT worked for you. I wouldn’t deny anyone anything as long as there is true informed consent. The question is whether that truly takes place.
By the way, I left a Yahoo Groups list that wanted to ban psych meds so please be careful about about making assumptions about my being a scientologist. You totally misinterpreted what I said.
My point was that psychiatry minimizes side effects constantly.
A perfect example is Dr. McCall who guessed that side effects of ECT occur about 5% of the time but in another sentence, she said she really didn’t know.
By the way, my comments have been censored on this site before (not by Dr. Pies). But to Dr. Grohol’s extreme credit, as soon as he is made aware of the situation, he immediately corrects it.
This has been a fascinating discussion. I keep coming back to see what’s next. I think that Dr. Pies’ comment about informed consent is where a large part of the discord lies between patients who are angry at having been coerced into having ECT or having a physician who didn’t talk about potential risks, etc and their physicians.
Dr. Pies writes, “Ironically, the very faculty needed to give informed consent is seriously eroded by severe depression—so we have a dilemma in some cases. However, the presence of depression itself does not automatically render a patient “incompetent” to make treatment decisions; many patients may still understand the risks and benefits of ECT, despite their impaired mental status when depressed.”
As Dr. Pies mentions informed consent is more than having a patient sign a document. Informed consent involves disclosing potential risks, benefits and alternatives to treatment and it assumes the patient is capable of understanding and agreeing to that. If a physician feels that the patient is so severely depressed that they can’t appreciate the need for treatment then why are they having them sign an informed consent document to begin with? There is no dilemma here, either they’re competent to understand or they’re not. If the patient is signing an ICD then they are presumed to be competent (even with severe depression) and thus the physician has an absolute obligation to discuss all of it, including the risks and to not use threats or coercion to obtain it.
I think my physician had good intentions, but it doesn’t make what he did right. Psychiatrists can’t hide behind the anosognosia argument as a reason not to provide proper informed consent. Patients are either competent to agree to treatment or they’re not. If the physician has a patient sign the ICD, then they’re saying that patient is competent. Period.
There can be NO full, free and informed consent in psychiatry at all, while the psychiatrist has discretionary power to coerce.
The gun might remain in the holster when the policeman tells you to provide your license, but the credible threat of coercion ALWAYS muddies the waters in psychiatry.
If psychiatry wants to be left alone and not criticized, it’s simple, all they have to do is eschew coercion, give up their coercive powers and we’ll shut up.
Until then, as we are now forced to live in terror of forced drugging and forced electroshock, you’ll have to deal with critics.
And in my opinion, anyone who agrees to let their doctor create iatrogenic epilepsy in a brain never proven diseased, just because they are sad, has been led down the garden path, and is desperately clinging to biological determinism, and will do ANYTHING the shrink suggests, even lobotomy.
In the end, if you believe feeling sad is a brain disease, even though no physician has ever examined your brain, you may be a die hard true believer and you’ll stop at nothing, electricity induced intentional doctor created seizures, all manner of toxic drugs, even having your brain taken to with a scalpel… whatever diminished your brain’s ability to feel life, you’ll claim ‘worked’, it’s a very sad belief system to get caught up in.
For the record, I’m not a member of the church of psychiatry, nor ANY other church. So don’t bother.
I realize this thread is really old, but Survivor really pissed me off. Survivor — fuck you! You obviously have NO idea of what depression really is if you think it is about “feeling sad”. I have dealt with depression all of my life — the people closest to me, who know my history, consistently comment to me that they are amazed at how functional I am, considering. My depression is endogenous (look it up, moron). My life can be going fine, no major stress, and suddenly I am isolating, losing interest in things I like, finding it hard to get out of bed, sometimes impossible to do the simplest tasks. My depression does not come from exogenous sources, though it can certainly be triggered by the same. Even my highest mood level is probably what many would consider their “okay” mood. I have done intensive therapy (you might try it), I have tried meds (with varying results). I am not looking for happiness — I am looking to be able to maintain functionality. I want to be able to work the job I am good at and not worry about losing it because 10% of the time I cannot function.
And if survivor isn’t the gold star member of a cult — well, let’s just acknowledge we all know the truth — we know survivor is a frickin idiot.
While lack of true Informed Consent seems to be an issue across all areas of medicine it becomes more relevant in Psychiatry due to the definition of ‘competence’. Yes, I was severely depressed but this didn’t effect my intelligence or prevent me from behaving rationally. Cognitively, it mainly effected my ability to concentrate and delayed the processing of information and in turn, I felt overwhelmed at having to make such big decisions. This is why the consent process for these people is so different than general medical or surgical consents. I needed much more time and repartition of the information with different forms of communication (written, verbal, videos). But mainly just the time to be allowed to process it all and make the decision when I was ready, knowing I could change my mind at anytime after. I don’t like the idea of ECT without consent (or forced ECT as it’s termed). I believe in this day and age that it’s unnecessary even though it does still appear to happen on occasion. I would like to see ECT become a ‘choice’ of a range of treatment options that people can choose willingly with the up-to-date information. I also just want to prevent a treatment which works for myself and others from becoming non-existent.
NB: Ann, sorry if I misinterpreted what you said. I don’t live in the US so can only comment on Psychiatry practises here and to be honest, the Psychaitrists (with the odd exception) do a much better job at educating regarding side effects than the Primary Care Physicians or Surgeons, though there is still a way to go. We also have a free public health care service and all acute mental health care is delivered through that. There is no insurance for mental health and no private alternative for acute mental health care. Everyone regardless of class receives care through the same mental health service. Therefore, we don’t have the Insurance issues around funding ECT treatment that you all seem to have. All treatment is free for all and decided on need. At the hospital where I live in NZ they only have between 1-3 people being treated with ECT a year (all with consent) out of the 100′s of people within the mental health service here. So it appears that it’s being used minimally and responsibly, at least here.
Yes I agree with Survivor that ‘feeling sad’ is not a brain disease and treatment for such with drugs, ECT or even Psychiatry is unethical and totally inappropriate. Though, I think everyone here is talking about servere mental illness which is very different and is not defined solely by a feeling.
Lisa, I appreciate reading your take on ECT. I do think a large part of the anger in the U.S. is because forced treatment is an issue here. Some psychiatrists in the U.S. give ECT by force (e.g. Minnesota, New York, etc).
I know of a woman who was told if she didn’t sign the form to have ECT, she would be sent to a state hospital (you definitely do not want to be sent to a state hospital in the U.S). Not exactly informed consent. She signed because she was threatened and that’s just wrong. The last thing people who are severely depressed need is to feel even more powerless.
And then there are the cases like Ray Sandford who you may have read about who had to go public to make the doctor stop forcing him to have ECT. It only takes a couple of Ray Sandfords before people like myself start to say, I don’t want to be anywhere near a psychiatrist who would have the power to do that to me against my will. That’s terrifying to me. Like you, no matter how depressed I got I still knew what I did and did not want to happen to me.
I wish doctors did not abuse it here, but unfortunately some do. Still, I think if true informed consent has occurred then patients should have access to that option if it’s what they choose to do.