It is rare to get involved in a dialogue over psychiatry without sooner or later someone defending the use of such “treatments” as ECT “as long as they are consented to”, with the term “informed consent” periodically employed. Herein lies the context for this piece. The issue that I want to probe, to be clear, is not whether force should be used—for of course it shouldn’t—but the thorny issue of consent itself—what exactly constitutes consent and what other issues besides consent are critical to factor in when considering what it is and is not legitimate for a “medical” professional to offer.
Let me begin by suggesting that the standard framing of such issues is conceptually impoverished. Nor is the problem limited to the psychiatric arena. It is part and parcel of the dominant liberal, rationalist, individualistic notion of choice generally—which has little do with how “choice” concretely plays out in the world. The point is, despite the image that we all have of an independent person scrupulously sifting through information and carefully coming to the best position, even calmly made choices are seldom arrived at this way. Our choices and our thoughts about what is possible and best are increasingly managed by institutions, prepackaged by forces and processes outside of our view. While of course it is important to keep others in mind, we can be under considerable pressure from family or friends. And others beyond our ken have a frightening degree of “interest” in what we “decide”. Moreover, oftentimes we find ourselves forced to jump in one direction or another at moments so charged that we can barely breathe. Nowhere is this more obvious than with psychiatry.
We are at a strange moment in history. On one hand psychiatry places little value on the rights of others and is only too willing to run roughshod over them. Reinforcing this infringement way more than actually constraining it, we have a rights apparatus managed by the state which creates but the illusion of safeguarding rights—consent primarily (see Burstow, 2014). In the process of defending rights—in itself absolutely vital—meanwhile, so many of psychiatry’s critics themselves slip into acting as if consent were the only value of significance, and in the process invest themselves in this liberal conceptualization.
The issue “in a nutshell”? It is commonplace for otherwise critical thinkers to take the position that as long as an individual “consents” to something called “a treatment”, then by definition, it is more or less unproblematic for a separate individual called “a doctor” to administer that treatment or an institution called “medical” to include it in its repertoire. Nor is it deemed relevant that the procedure being offered has no medical validity, exists only because it is in the interests of an industry, and beyond that, that it does profound damage—electroshock, for example (for literature demonstrating the lack of validity and the harm caused by ECT, see for instance, Breggin, 2007 and 1991). In some formulations (and admittedly not others), nor is it deemed significant who said what to a person just before she consented or what is likely to befall her afterward. What such a position does in essence is to at once hollow out and fetishize consent. It is as if we had substituted law for ethics and the technical for the meaningful. We have likewise conflated two very separate issues. While no one should be subjected to a “treatment” without consent, the giving of consent does not in and of itself make a “treatment” acceptable.
That noted, some questions to reflect on: If a way of being is not a “medical issue”, what happens when we call it medical? Irrespective of whether or not a “patient” consents, does a doctor have a right to offer an intervention as if it were medical when it is not? Or is it enough that his/her fellow doctors keep talking as if it were medical? Is it acceptable for what is not medical to be taken up as such, promoted, and popularized by a putative branch of medicine? Does a doctor have a right to offer what substantially harms—and does little else? When a figure as esteemed in our society as a doctor offers a “bogus” product, is that the moral equivalent of a businessman offering it? Who benefits and who loses from that happening? Has anyone the inherent right to brain-damage another? If brain-damaging is not okay on the face of it, does “the recipient” signing on the dotted line make it okay? Is informed consent sufficient? When is “informed consent” not “informed”? Should the reason why one consents have a bearing? Or are reasons irrelevant? Should the context in which one consents have a bearing? Or are contexts irrelevant? Are we responsible only for what we force on others? Or are we also responsible for what we introduce, make available, recommend, offer?
As help in pondering such questions, correspondingly, I would introduce the following testimony by an ECT survivor (now deceased) named Chris:
I would like to speak briefly about electroshock and informed consent. Although they are inextricably linked, I will address them separately….I was hospitalized twice. I received ECT in both hospitalizations. The first hospitalization…was two courses of treatment….The second time I received one course of treatment….I was never given any information about potential risks, let alone any reliable information about the potential risks….What I was exposed to was the usual psychiatric propaganda. The sort of stuff you…hear in the media frequently. The idea that ECT saves lives. [That] ECT is now safe and effective. Is not damaging…is now safe and modern. It is as though beating someone with a plastic stick is much an improvement [over] the old wooden stick. I was shown a short video in the hospital. The video actually showed the person going through a course of being shocked....The video did not show the person awakening in the recovery room alone and disoriented….The very obvious and important thing is that blunt force trauma to the brain is not healing. Blunt force trauma to the brain is damaging….Finally on the topic of consent, I would like to say very clearly that when you are in a state of complete terror, absolute despair, and utter isolation…when you are in such great pain that suicide seems the only reasonable way to escape that pain, you cannot be said to give consent. (http://coalitionagainstpsychiatricassault.wordpress.com/articles/personal-narratives)
Implicit in this testimony is the position that giving “informed” consent to ECT is close to impossible for the “information” given is a “party-line” generated by the industry. More particularly, not only are key elements characteristically missing (e.g., that it damages the brain) but it is factually inaccurate and egregiously misleading. The same generalization, I would suggest, can be made about consent in psychiatry generally. I would quote in this regard from a comment by Mead (2014):
I for one consented to take the drugs because I was told all sorts of “facts” about biological illnesses, correction of chemical imbalance, “unmasking” etc. I was told that the drugs were “safe” and “effective” “medicine” and was rarely told about risks, particularly of permanent damage….The fact remains that I willingly embraced psychiatry because I believed it was the only rational choice — in essence, not a choice at all.
Of course one answer to the dilemma of “inadequate information” and egregious “misinformation” is that those of us with the knowledge and “fire in the belly” create and disseminate accurate information—and many are doing just that. As long as the current system prevails, it is mistake, however, to think what information we provide will be afforded the same credibility as the misinformation churned out by the system, or indeed will even be seen by the average person confronted with such a “choice”.
What implication ought these and related conundrums hold for critics? The evolution of Dr. Peter Breggin’s position is significant in this regard. When I first started organizing against ECT, already his medical position was that there is a one-to-one ratio between the “therapeutic effect” of ECT and the damage done (see Breggin, 1979). Nonetheless, he did not take an abolitionist position. What he advocated instead is pushing psychiatry to provide better information, just as so many critics do today. This notwithstanding, he eventually shifted to an abolitionist stance on ECT. Why? The degree of damage done and his growing sense that there is little to to be gained by arguing for better information for psychiatrists are in the business of circulating misinformation among themselves (see Breggin, 1983). By the same token, with misinformation continuing and with ever more proof of the damaging effects of the various “treatments” having materialized, minimally, critics today should stop taking refuge in the concept of consent.
To be clear, I am not denying the possibility of official information materializing that is less egregiously wanting than what is provided now. Indeed, some hospitals’ consent forms are “less inadequate” than others. But the point is that no matter how improved the information became—and let’s be clear, it is going in the opposite direction—it is predictable that neither a consent form nor the verbal information provided would ever go far enough for anything resembling meaningful consent to be enacted. The point is the misinformation is being produced en masse, and it is hardly in the industry’s interest to substantially change.
I am reminded here of the article “A Model Consent Form for Psychiatric Drugs”, by Cohen and Jacobs (Cohen and Jacobs, 2000). Cohen and Jacobs did an admirable job designing a form for psychiatric drug consent, including such information as there is no proof of any mental illness, that if problems arose, the doctor would probably deny that they stemmed from the drug; moreover, they clarified the enormous likelihood of permanent impairment arising and specified the precise nature of the risk for each major class of drug. The “kicker” is, however, almost no “patient” would take a drug were it accompanied with this information, and accordingly, no such consent forms would ever figure in the official repertoire. The point is that psychiatry is built on lies and cover-ups and it has a huge vested interest in continuing both. Nor does the problem of “consent” stop here.
Note, consent must not only be “informed”, it must be freely given. “Free and informed consent” is the precise discourse used. What we are assuming when we say that “free and informed consent” has been given is that the person has not been manipulated in any way and was able to say “no”, with no repercussion arising from this refusal other than those inherent in not taking the procedure in question. We hear these concepts in medicine proper so often that we tend not to question that they are being applied. While such an assumption misses the point in general, when this assumption is extended to psychiatry, what is left out is precisely the nature of the context. The point is that these are inherently coercive institutions, and so even if you got beyond the propaganda, and even if you are technically allowed to refuse, subtle and oftentimes not-so-subtle pressures are almost invariably and inevitably brought to bear. Take the many many women who over the years have been told that they never get well if they did not comply. Take being chided that you are being something less than a good wife to your husband if you reject “the treatment” (see Wendy’s story in Burstow, 2009). Take the change in tone, the condescending looks with which people are faced. And beyond pressure of this ilk is pressure by family and loved ones who themselves have been socialized to believe in the medical model. Such pressure may be imagined as existing on a continuum, with withdrawal of empathy and support on one end and further along, such phenomena as those experienced by Connie Neil, who accepted ECT out of a well-reasoned fear that if she did not, she might never get her baby back from her mother-in-law (see Burstow, 2006 and Phoenix Rising Collective, 1984). And then there is the pressure that comes from within, from having being told so often that you are mentally ill that you have internalized the message and in the process become your own enforcer.
The point is that consent in this arena is neither “free” nor “informed”. Nor would amassing an even larger army to oversee the consent process make it so. Ironically, indeed, in the long run all that expanding this sphere of operations would succeed in accomplishing would be augmenting the size and credibility of the institution. While it beyond the scope of this article to cover this dimension, I would add, nor do the prepackaged alternatives with which people are presented even roughly equate with what, in our deeper moments, we actually intend by the word “choice”.
Moreover, putting all this aside—which we can do only hypothetically—even were consent free and informed, and even were we convinced that real choice was involved, the question remains: Is what is happening ethical? In this regard, Chris points out quite correctly that “blunt force trauma to the brain” (inherent in ECT) is not healing and is always damaging. That said, bracket off for a moment the lack of real consent and ask yourself this: Is it ever acceptable for a medical institution to unleash such unmitigated damage on a person? Violence, however cosmeticized? To be clear, I am not suggesting that individuals do not have the right to harm themselves. Indeed we all of us do. However, doctors per se have no right to do harm—never mind to advocate for it or to call it “medicine”.
The issue at hand, I would add, becomes still more confused when people contend that we would be interfering with someone’s right to choose by eliminating a treatment. Treatments in “real medicine” are discarded all the time as a result of an assessment of the harm caused. If it is valid as opposed to an interference with personal liberty to stop offering a treatment because of the enormity of the harm caused when the treatment is actually medical, how much clearer this issue should be when “the treatment” is not medical. Nor is okay to pass off the non-medical as medical, regardless. Bottom line: doctors should not be in the business of introducing bogus treatments and passing them off as medical. It is likewise confused, I would add, to defend such abuse on the grounds that people need choices.
Still other dimensions come to light in Chris’s testimony—some transparently present, some lurking just beneath the surface. He states, “I would like to say very clearly that when you are in a state of complete terror, absolute despair, and utter isolation…when you are in such great pain that suicide seems the only reasonable way to escape that pain, you cannot be said to give consent.” In essence, what Chris is telling us is that he was so terrified and so alone he would have agreed to anything. Comments like this, minimally, should give us pause. As we are all painfully aware, being in such a horrible state that one would hazard anything is hardly uncommon for people in “psychiatric institutions” and/or in crisis. But does that mean that “anything” is fair game for a psychiatrist or anyone else to “offer”? Or rather, as Chris suggests, should this very vulnerability put a greater onus on others to take care in what they offer?
Chris himself states very clearly that agreement under conditions such as this cannot be called “consent”. Finally, he hints at something that I will only briefly allude to here for it is not central to my argument, albeit it is a dimension that we forget to our peril —that accepting such a treatment may be part of a suicidal wish, born precisely out of agony and despair. Again something to bear in mind.
At the very end of his testimony, Chris makes one final point. To whit:
Support and compassion do not cause brain damage. And as far as I know, no one has ever died from oversleeping.
If Chris’s main point is that consent to psychiatric “treatment” is inherently compromised, his secondary point is that it unacceptable for a doctor to perpetrate harm. This is so, I would suggest, irrespective of consent. I would remind readers here of the ancient Greek medical principle “primum non necere”—first do not harm. Also, the Hippocratic Oath, which obliges the physician to use medicine to approach disease and in the process “to do no harm” (see http://en.wikipedia.org/wiki/Primum_non_nocere). How is it that we have so strayed from the basis of the profession that we are defending the right of doctors to approach non-disease as if it were disease and to do so in a way that harms? How is it that we are conflating individual choice with what “medical practitioners” should or should not be providing?
Which brings us back to where we began.
To sum up, our prevailing conceptualizations of choice are out of keeping with our experiences as human beings. With regard to psychiatry more particularly, we have fetishized consent to such an extent that we have lost sight of ethics in a more expansive sense and the nature of consent per se. Moreover, we have trivialized hegemony and the fact of institutional rule. The point is, a liberal and individualistic notion of consent is wanting at the best of times. Beyond that, it is seriously at odds with the truth about psychiatry. When it comes to psychiatry, typically, consent is not even close to informed, is not even close to “free”. Additionally, what is far more basic, “doctors” should not be offering bogus medical “treatments, nor interventions that essentially harm—and yet such is the nature of psychiatric “choice”.
(for research, articles, and interview excerpts on these and related topics, see other posting on http://bizomadness.blogspot.ca or follow author on twitter @BizOMadness)
Breggin, P. (1979). Electroshock: Its brain-disabling effects. New York: Springer.
Breggin, P. (1983). ECT ban controversy (www.breggin.com/ECT/ECTBanControversy.pdf).
Breggin, P. (1991). Electroshock: Scientific, ethical, and political issues. International Journal of Risk and Safety in Medicine, 11, 5-40.
Breggin, P. (2007). ECT damages the brain. Ethical Human Psychology and Psychiatry, 9, 83 ff.
Burstow, B. (2006). Electroshock as a form of violence against women. Violence Against Women, 12, 372-392.
Burstow, B. (2009). Electroshock: The gentleman’s way to batter women. Domestic Violence Report, 1 ff.
Burstow, B. (2014). The Consent and Capacity Board: Justice enacted (http://www.bizomadness.blogspot.ca/2014/07/as-researcher-investigating-psychiatry.html).
Cohen, D. and Jacobs, D. (2000). A model consent form for psychiatric drugs (http://laingsociety.org/colloquia/polofdiagnosis/modelconsent.htm).
Mead, E. (2014). Comment. http://www.madinamerica.com/2014/07/attrition-model-psychiatry-abolition/#comment-46145.
Phoenix Rising Collective (Ed.) (1984). Testimony on electroshock. Phoenix Rising 4 (3&4), 16A-22A.
This will be required reading in the "Psychology of Women" class that I am teaching this semester at Montclair State University in New Jersey, for the week we will be discussing feminist research methods and informed consent (I believe chapter 1 . . . .) Thanks, Bonnie.ReplyDelete
So good to hear that, Lauren, for it is critical that university students begin to grapple with such things. And best of luck with the new course, Lauren.ReplyDelete