There is probably no clearer example of the pernicious effect of rhetoric in psychiatry than what has happened with electroconvulsive therapy or ECT. ECT has a demonstrated therapeutic and life saving effect for decades and yet it is a flashpoint for antipsychiatry groups. I had the experience of being attacked for pointing this out and the people attacking me posted references from a book that was published in 1980 and it was debunked at the time of publication in a book report in the New England Journal of Medicine. Ignoring what the facts are - often for decades is one of the rhetorical techniques. Interestingly that technique was pointed out in the book report.
There is no doubt that ECT is a very safe and effective treatment. The onset of action is also much faster than can be expected from medications of psychotherapy. But the most important aspect of the ECT recommendation is way it is recommended by clinical psychiatrists. It is not recommended for everyone just because it is highly effective. Clinical psychiatrists recommend ECT for treatment resistant depression. By definition, that means various treatment modalities have been tried and found to be ineffective. That may have included many antidepressant trials. It is often forgotten these days that psychiatrists are seeing patients who have been treated for decades with antidepressants. I often see people who have been taking the same antidepressant with dose modifications for 10-15 years or people who have been taking 5-9 different antidepressants over the same period of time. Those antidepressants have been prescribed by various non-psychiatrists. The majority of these patients have also seen psychotherapists and list the acronyms (CBT, DBT, IPT, ACT, REBT, etc) and specifics about the therapy. They are also clear that they were not helped by psychotherapy.
The process of being stuck in that situation by itself can lead to increasing hopelessness associated with the thought: "Am I always going to be depressed? Is there anything that can be done to get rid of this depression. Would it be better for myself and anyone else if I was just dead rather than hanging on like this?" In the case of more dangerous forms of depression, delusional thinking presents a greater level of danger in the form of suicide attempts and completions. One of the ironies of depression is that the public perceives it as a minor condition that is easily treated. That ignores the fact that most people that die from suicide are depressed. Severe depression is a lethal condition and not a minor one. Ignoring severe depression and not treating it is an option only by denying that it exists.
A second group of people who need ECT as a life saving treatment are people with catatonia. Catatonia is a potentially lethal condition that develops in association with other severe mental conditions - especially mood disorders. Malignant or delirious catatonia had an extremely high mortality rate (80%) prior to use of ECT. Death from catatonia typically occurred from severe food and water refusal, agitation leading to congestive heart failure, injuries from severe agitation, and in some cases autonomic dysregulation often seen as elevated body temperature with no evidence of infection. This group of patients is hospitalized and cannot function outside of a hospital setting. Even inside a hospital they need very intensive monitoring to protect them from injury. The fastest way to treat these patients, keep them safe, and help them to get out of the hospital is ECT. In fact, it may be the only consistently effective therapy.
People with severe medical problems who cannot tolerate antidepressant or antipsychotic medical constitute another group who can benefit immensely from ECT. In many cases these patients are disabled by depression and do not appear to be recovering form their associated medical illness. They may be in a coronary care unit and taking in inadequate amounts of food and fluids due to depression. At the same time they may not be able to take medications due to an acute cardiac condition. They can generally be safely treated with ECT.
A final important group of people are those with experience with ECT. They typically have a form of disabling depression, know that most of the usual medications either do not work or cause unacceptable side effects. They are also typically very functional people and know that they need to get back to work as soon as possible. They request elective ECT for treatment.
Why should anyone want to deny ECT to people in the above groups when it is safe and effective? Here is some of the rhetoric evident in any Internet discussion.
1. I don't like it and will never accept it!
You don't have to. First it is only indicated for a limited number of severe conditions like treatment resistant depression, depression, catatonia, treatment refractory mania, psychosis, and high suicide risk. If you don't have any of those conditions no psychiatrist is going to recommend it to you. But further - even if you have the conditions a psychiatrist may not recommend it because it is not available in the area. Political rhetoric may have driven it out. Other less effective treatments like ketamine infusions and transcranial magnetic stimulation (rTMS) may be recommended instead.
The second issue is informed consent. You can decide you don't want it. Story over at that point. I have no interest in talking anyone into it. My job is to provide the latest information and the patient decides and consents or does not consent.
2. ECT causes brain damage!
Irrelevant based on the informed consent issue outlined above unless you are trying to make a political argument. But more striking is the body of evidence that has accumulated that there is no evidence at all that ECT alters brain anatomy or leads to neuropathological changes. Denial or lack of scholarship are the most likely explanations of this problem. Given the ease with which medical information can be accessed these days and the fact that many people making these arguments use antiquated and disproved data while ignoring the contradictory positive data - denial or intentional distortion of the data are the only obvious motives.
3. There are important political and ethical considerations!
Are there really? Not when you look at the severity of the problem. Considering psychiatric illness and disease on par with other physical illnesses is difficult if you have never seen what happens on an acute care psychiatric setting where the most serious problems in psychiatry are treated. In the current American healthcare system these patients are often committed and in some cases transferred to state hospitals if they do not get well. In some cases, states have found it easier to close hospitals so that these extremely ill people are sent back to their families, to jail, or to the streets. I routinely see patients who have had a severe psychiatric illness and were ill and unstable for decades. In many cases they are chronically ill and never regain stability because of neglect or inability to treat them. All of those years of suffering and in many cases death could have been avoided with proper treatment early in the course. In many cases the proper treatment was ECT.
How does that compare with the rest of medicine? It does not. People with life threatening and/or disabling conditions are allowed access to high risk treatment options. A few examples can illustrate this point. Cancer is a good example. Chemotherapy agents are high risk medications that can lead to serious and in some cases lethal side effects. Giving informed consent for treatment with chemotherapy requires agreeing to accept the risk of congestive heart failure and many other serious and potential lethal side effects from those agents. The explosion of immunotherapy agents for autoimmune disorders provides similar risk. Even more importantly, every patient consenting to the treatment are considered to be competent consentors. In other words they are considered able to understand the information, make rational decisions about it, and provide consent on that rational basis. Patients consenting to ECT may not be competent cosentors based on vulnerability laws in states. Consent is not considered to be competent necessarily based on status (on an inpatient psychiatric unit or outpatient clinic) or by specific statutes about diagnoses or recent behavior. Those same rules do not apply to people giving consent for high risk medical or surgical treatments. Keep in mind that ECT is portrayed as a high risk procedure - but in reality it is not.
4. What about involuntary treatment with ECT?
Some states have statutes that allow courts to decide on whether or not people who are civilly committed and have high risk psychiatric illness. That is typically based on a hearing with opposing attorneys and a judge. Unique state statutes provide the standards that must be met in those hearings. The court typically hires examiners (psychologists, psychiatrists) to testify about diagnosis and recommendations. Since ECT is a medical procedure psychiatrists may be required to examine the patient and testify about the recommendation. These hearing may also be used because the patient is not competent to consent, but clinical competency is not a formal legal decision until it has been made by a court. In these cases the state has an interest in preventing death and disability of its citizens.
I have thought a long time about getting rid of involuntary treatment with ECT but how would that work? The psychiatrist would be in a position that would be difficult to defend from a clinical standpoint. Anyone with a severe disorder not responding to standard treatment needs to hear about ECT as an option. Their treating psychiatrist needs to make sure that happens and that the discussion is documented as well as the patient's response. If involuntary treatment was not an option for severely ill people who were unable to consent, they would basically be maintained in a chronically disabled, high risk, or worsening course of illness. I don't think that is a decision that a psychiatrist can make because it is essentially one with a dubious basis. At that level court intervention makes sense.
5. What can be done to address ECT side effects if I get them?
First, like all medical procedures make sure the ECT is provided by an expert, working with an anesthesiologist who is used to providing general anesthesia for ECT. Second, that expert needs to assess the results and side effects of those treatments on a treatment to treatment basis. Modifications in techniques and side effect prevention need to occur on a regular basis if side effects are there. In the case of voluntary ECT and significant side effects, stopping the treatment at any time is an option for the patient. In the case of involuntary treatment or substituted consent by a court involved family members or the patient can advocate for the same discontinuation. The attending psychiatrist can also initiate discontinuing the treatment at any time based on side effects.
The perplexing issue is the number of people who write about numerous ECT side effects and that they have had a course of many treatments. I ask myself, how does that happen? Have they been told that they will get used to side effects? Were the side effects ignored? What happened? Why didn't they just decide to stop? In those cases, the first step should always be to discuss the issues with the attending psychiatrist and psychiatrist performing the ECT. If that is not effective, every state in the United States has multiple forums for investigation. In the state of Minnesota, there is an Ombudsman for Mental Health and the Board of Medical Practice. Both of these agencies will exhaustively investigate any complaint brought to their attention. People are encouraged to complain about physicians and a national watchdog agency monitors how many complaints are made in each state and holds states with low complaint rates in a negative light.
More problematic is the political approach to ECT and how it has affected policy and has the potential to decrease the availability of this modality for very ill patients. A recent editorial review pointed out how the process in the UK was factored into NICE guidelines that were restrictive and that those guidelines may adversely affect ECT practice in the US (1). The restrictive nature of the NICE guidelines was apparently based in part on a flawed study suggesting more dissatisfaction and memory loss than expected. A re-analysis of that data (3) describes the nature of those flaws that include in part:
"Two other studies selected individuals from user/advocacy groups generally biased against ECT and were probably overlapping. The significance of memory problems was not mentioned in any of the studies."
It is interesting that it took 9 years to reassess the original data and come to that conclusion and in the meantime it apparently was enough to alter ECT policy in the UK.
No other medical specialty allows political biases to affect practice standards, especially when it compromises the care of severely and potentially fatally ill patients.
There is no reason why psychiatry should either.
George Dawson, MD, DFAPA
References:
1: McDonald WM, Weiner RD, Fochtmann LJ, McCall WV. The FDA and ECT. J ECT. 2016 Jun;32(2):75-7. doi: 10.1097/YCT.0000000000000326. PubMed PMID: 27191123
2: Rose D, Fleischmann P, Wykes T, Leese M, Bindman J. Patients' perspectives on electroconvulsive therapy: systematic review. BMJ. 2003 Jun 21;326(7403):1363.
Review. PubMed PMID: 12816822.
3: Bergsholm P. Patients' perspectives on electroconvulsive therapy: a reevaluation of the review by Rose et al on memory loss after electroconvulsive
therapy. J ECT. 2012 Mar;28(1):27-30. doi: 10.1097/YCT.0b013e31822d796c. Review.
PubMed PMID: 22343578.
George Dawson, MD, DFAPA
References:
1: McDonald WM, Weiner RD, Fochtmann LJ, McCall WV. The FDA and ECT. J ECT. 2016 Jun;32(2):75-7. doi: 10.1097/YCT.0000000000000326. PubMed PMID: 27191123
4: FDA (Proposed Rule for reclassifying ECT devices): Neurological Devices; Reclassification
of Electroconvulsive Therapy Devices
Intended for Use in Treating Severe
Major Depressive Episode in Patients
18 Years of Age and Older Who Are
Treatment Resistant or Require a
Rapid Response; Effective Date of
Requirement for Premarket Approval
for Electroconvulsive Therapy for
Certain Specified Intended Uses
AGENCY: Food and Drug Administration,
HHS.
ACTION: Proposed order.
5: Electroconvulsive Therapy (ECT)
Devices for Class II Intended Uses
Draft Guidance for Industry,
Clinicians and Food and Drug
Administration Staff.
From my 25 years of experience, it is likely to see profound post ECT sequelae in a person who is primarily personality disordered receive it. Equally what one sees with the heinous polypharmacy provided in Axis 2 Patients as well. Ironic, eh, that biological interventions disrupt Personality Disorder, makes one wonder what is the possible biological factor we just can't figure out...
ReplyDeleteYour article on ECT overlooks some criticial issues in my opinion. First the question on whether it causes damage or not boils down on what you define as "damage". While it does not appear to cause gross structural changes that would deviate from the norm in an MRI, the fact remains that it can cause persistent cognitive problems, more commonly retrograde amnesia, but also anterograde amnesia and shortterm memory loss. This has been validated by a huge number of independent accounts on the internet, but also in peer reviewed journals. Even my own psychiatrist admits that he has cases who have shortterm memory loss from ECT and never recovered from it. If the brain functions markedly worse after ECT I don't see how this cannot be regarded as damage. I also fail to realize what is the problem about regarding ECT as being "damage". Every surgery damages the body in a purposeful way to improve it's function. ECT would not be different in this regard.
ReplyDeleteWhile I think that antipsychiatry is for the most part a quack cult, like anti vaxxers or AIDS deniers, in my opinion they have the most legitimacy. Psychiatry has a dark history of forcing ineffective treatments on people (e. g. lobotomy), using ECT improperly and denying problems associated with their drugs, like in the case of antipsychotics, SSRIs and benzodiazepines. There are still many outrageous problems, like for example the dissociative identity disorder scam, the complete ignorance of whole disorders (e. g. depersonalization disorder), the popularity of pseudoscientific psychoanalysis and the branding of physical disorders as psychogenic (e. g. chronic fatigue syndrome) despite there being no scientific evidence for this. These are the facts and no "rhetorical techniques". The existence of antipsychiatry is primarly a fault of psychiatrists themselves, because they allow avoidable grievances to exist.
What you write in "What can be done to address ECT side effects if I get them?" is a bit naive. The explanation for patients receiving many sessions is simple: While stopping is an option, patients are told by psychiatrists that cognitive side-effects are temporary. They believe what their doctor says and if they try ECT they have terrible symptoms to begin with and the hope that ECT helps them, which is a strong incentive to carry on despite all problems. I suppose that psychiatrists share this incentive, because they also want their patients to be cured and move on. The persistence of profound cognitive impairment from ECT is per definition first noticed when the patient has the bad luck that their cognitive problems don't resolve after weeks or months. Is it so far fetched that they may feel duped in such cases, especially when they belong to the 50% of patients whose treatment-resistant depression does not respond to ECT?
As someone who suffered from treatment-resistant depression the last 4.5 years and did not respond to more than 20 medications, I'm moving closer and closer to ECT. I realize that it has a fifty-fifty chance to help me. But I'm also seeing that psychiatrists continue to not properly address the problems ECT has, do not conduct adequate studies on what cognitive side-effects arise and how persistent they are and only very hesitantly attempt to find ways to reduce such side-effects. Approaches like using anti-dementia drugs as adjuncts to ECT or magnetic seizure therapy are only extremely slowly being studied, despite an urgent need for improved treatments for mental disorders. Generally medical advancements do not seem to exist in psychiatry. The last radical breakthrough in psychiatry was Clozapine and that was 45 YEARS ago. At least my hopeless is not only caused by my depression.
I realize that you have a difficult decision and researching the decision, maintaining a skeptical attitude and having detailed discussions with your psychiatrist is the best way to proceed. I have advised hundreds (thousands?) of people on that decision in the past 34 years. I sincerely hope that process works well for you – whether you decide to try ECT or not. Nothing in the rest of this post should intrude on that process.
DeleteOn the issue of memory loss versus neuropathology – ECT can cause persistent memory loss for some people. The type of memory is important as well as the context. The original 1978 APA guideline lists survey data on side effects including memory problems along with overall satisfaction with the procedure. There are detailed reviews of this issue but the proper theoretical framework to analyze these problems has only recently been proposed. It is likely previous studies did not take this framework into consideration. That is not to explain away cognitive side effects only to plainly state that the issue is complex. So complex in fact that I should probably generate a blog post about it.
Needless to say that I completely disagree with blaming psychiatry for antipsychiatry for “unaddressed grievances”. The medication problems that you discuss were and are best researched by psychiatrists.
Your characterization of my advice of how to address side effects as a “bit naive” really does not take into consideration how many times I have given this advice. It also does not take into consideration that at this point in my career I have stopped ECT treatments more often than I have started them. As I have written many times on this blog, there are no medical procedures that do not involve risk. I personally have experienced many adverse and, in some cases, life-threatening complications from medical procedures. I did not get any information of the possibility of those complications before I was administered the treatments and in a couple of cases was lucky to have survived. ECT consent forms should definitely list permanent memory problems/loss as a risk and it should not be minimized by qualifiers.
I also disagree with your statement about the lack of “breakthroughs” in psychiatry. Your time frame is wrong. Unless my math is off 45 years ago takes us back to 1973. Clozapine was not available for prescription in the USA until 1990. I have a lot of experience with clozapine and it is a toxic drug that needs careful monitoring. Like most fields in medicine there are very few “breakthrough” therapies. There have been many incremental improvements including psychotherapies that psychiatrists are generally not given credit for and improved biological therapies. Current medications were invented to reduce side effects and they have been successful in that area. Tardive dyskinesia still occurs but it was a widespread clinical problem when I first started out. SSRIs and SNRIs have improved safety profiles and better coverage of other symptoms despite the withdrawal symptoms. All of the discussion about how psychiatrists ignore side effects misses the point that psychiatrists are a lead specialty in investigating drug interactions at the pharmacokinetic, pharmacodynamic, genomic, metabolomic, and transcriptomic levels. You did not say much about TMS but many consider it to be an alternative to ECT.
I can tell you didn’t write this looking for my advice. I will just state what I have stated here many, many times before. The criticisms you have are not unique to psychiatry. Why aren’t all of those other specialties that actually kill people and nearly killed me twice receiving equal blame? I have posted the answers here in the past and that is why antipsychiatry exists.
One of the reasons I write this blog is just to point out that fact.
Concerning Clozapine you are not exactly right. For the USA you may be correct, but at least in Germany it was on the market in 1972 under the trade name Leponex.
DeleteI agree that there are some incremental improvements in psychiatry. SSRIs, SNRI and atypical antipsychotics may offer a different and for some people better side-effect profile. Recently Cariprazine was approved and seems to help a bit against the negative symptoms of schizophrenia. However the effectiveness of SSRIs has been called into question in the recent past. They often work at least for severely depressed people, but they do not really appear to be more effective than the older drugs. Reducing the treatment-resistant population is one of the most pressing problems of psychiatry and I do not really see much progress in the previous decades. In the last 20 years not many new drugs came out for mental disorders and most did little more than targeting the same monoaminergic pathways: https://www.centerwatch.com/drug-information/fda-approved-drugs/therapeutic-area/17/psychiatry-psychology
Hopefully drugs which mimic the mechanism of action of Ketamine (e. g. Repastinel), some other new drugs and invasive surgery like deep brain stimulation is going to change this in the near future. But these prospects are not secure. My impression about TMS, at least the standard dorsolateral prefrontal cortex protocol, is that it overall is disappointing for treatment-resistant depression, especially for people like me, who have anhedonia as main symptom and feel like their brain stopped working. Even many psychiatrists do not appear to regard it as an alternative to ECT.
I know there are also problems in other medical areas. For example you will see this in otolaryngology if you ever get tinnitus or in ophtalmology if you ever get floaters. I don't know what you have experienced, because I did not read all your blog posts. Still I don't agree with your "equal blame" argument, because by this you are demanding "equality towards injustice" which is not the path to progress. Psychiatry still has problems that you won't find in other areas and that could be solved and I think by this psychiatrists at least partially created their own enemies. Of course, this is not the only explanation why antipsychiatry exists, because antipsychiatry does not really rationally criticize psychiatry, but instead even denies the existence of mental disorders.
Concerning ECT there are still some safer, albeit experimental, options for me. Should they not work out, I think I might try ECT. At least I have done my homework. I know what I can win, but also that I can loose the little rest I still have, especially if I need bilateral treatments and maintenance treatments. It probably will be the most important decision in my life. I might possibly try to get into a magnetic seizure therapy trial, which is an experimental type of electroconvulsive therapy, with less cognitive side-effects. It is planned to conduct one in Germany in the near future. Unfortunately they have problems to get funding, because no company appears to be interested to market this treatment.
Generally my criticism is not meant as an attack. If you ever watched movies you probably know that some prisoners spend their time in the law library to find a way out. I'm much like that. Just replace prison with depression and law with psychiatry knowledge. Overall I must say that your blog is good and offered many insights to me. But this does not necessarily mean that everything is correct and you probably also don't want readers who blindly believe everything, but are willing to learn in order to change their fate for the better.
"Still I don't agree with your "equal blame" argument, because by this you are demanding "equality towards injustice" which is not the path to progress. Psychiatry still has problems that you won't find in other areas and that could be solved and I think by this psychiatrists at least partially created their own enemies."
ReplyDeleteNot an "equal blame" argument.
Just pointing out that the only way you can hold that argument is to devalue psychiatry while overidealizing every other medical specialty. Your example of "floaters" doesn't even scratch the surface.
But I will leave it at that.