Sunday, February 21, 2010

Beyond Denial by Linda Andre

There are signs that it is possible for professionals to move beyond denial of electro- convulsive therapy's (ECT) permanent adverse effects, toward not only acknowledgment of damage but help for ECT survivors. In 2006 and 2007, the British journal Advances in Psychiatric Treatment published two groundbreaking articles. The first, by Americans Harold Robertson and Robin Pryor, incorporates the voices of survivors (from FDA files and British studies) into a discussion of the different types of memory and cognitive disability caused by shock. The authors further discuss how best to assess these types of deficits with the type of neuropsychological tests used on persons who have experienced other types of brain injury. They criticize the tests commonly used by ECT proponents as much too simple and not relevant to ECT. Finally they propose a model of informed consent that describes rather than denies what we know:

"Patients can be told that permanent amnesia is one of the common or serious/frequently occurring effects of ECT and that it affects at least one third of the patients. Such amnesia may be presented as having multiple dimensions: the amount of life lost, the temporal gradient, the nature of what is lost, and the effect of memory erasure on the individual's life. The amount of life lost to amnesia cannot be predicted; patients should be warned that it has been known to extend to 10-20 years. It should be made clear that amnesia is not limited to information about discrete events or to facts that are easily regained, such as dates and telephone numbers, but that it encompasses all thoughts, feelings, personal interactions and relationships, learning and skills associated with the erased time period, and thus there is no simple or easy way to recapture what is lost. Since the temporal gradient of ECT amnesia is the opposite of normal forgetting, patients should be warned that the most recent months or years will be most effected."

"Patients should be clearly told that ECT may have serious and permanent effects on both memory ability and non-memory cognition. These are best described in everyday terms: 'the ability to plan and organize and get things done', rather than 'executive function'. Intact memory and intelligence are highly prized in our culture. The more valuable a possession, the more important it is to know about even a small chance that it may be permanently lost."

The next year, Maeve Mangaoang and Jim Lucy ( of Ireland) built on Robertson and Pryor's work in the first article ever published to address the issue of how best to help rehabilitate those who suffer memory and cognitive disability:

" Cognitive rehabilitation techniques that are used with brain-injured patients should also be considered for use with patients experiencing memory and/or cognitive disability following ECT."

"What is striking from the literature in this area is the lack of routine, formal assessment of patients' neuropsychological performance following a course of ECT, despite the long-known risk to memory function... All patients should undergo cognitive assessment before their first ECT session... Reassessment should be schedualed after a sufficiently long interval (more than six months after treatment) so that persistent cognitive and memory deficits can be identified... It should be clear that such documentation is not enough; a specific programme of cognitive rehabilitation should be designed and made available to all patients following ECT, and details of this treatment should be included with the information that patients receive prior to treatment..."

Denial of, and withholding help, for injuries caused by ECT is not only bad for patients, they argue, but ironically ends up subverting the ECT industry's Public Relations as well. "Failure to attempt to rehabilitate patients may reinforce the negative public image of ECT specifically and psychiatry in general."

Rather than draw the obvious logical conclusion- permanent memory loss and cognitive disability happens when you put electricity through the brain and it cannot be prevented- they borrow a page from the American PR book. The problem, they decided, must be that the ECT just wasn't done right. The solution is to raise standards, and teach everyone to do it correctly, and check up on them to see if they were doing so. It wasn't that ECT causes damage [ and only temporarily relieves the symptoms it tries to address, if at all], only that poorly performed ECT might do so.

The counter argument is quite simple. It's this book; it's history. As we have seen, such a claim has been made over and over since the very early days of ECT seventy years ago. And each so-called refinement or modification of the shock box or electrode placement or the accompanying drugs and anesthesia has failed to eradicate the serious, permanent adverse effects. The simple reality of biology and neuroanatomy won't be fooled.

If any other medical treatment had admittedly been done incorrectly for seventy years (while, at periodic junctures, the manufacturers and users of the equipment had proclaimed "Now we know how to to it!" and had been proven wrong)...

If manufacturers and users had admitted, after seven decades, that the still didn't know how to do it, and meanwhile seven decades of accumulated evidence showed that large numbers of patients had been harmed, permanently disabled, or killed...

What would we, as a society, do?

Would we say to doctors, "OK, keep trying everything that hasn't worked in the past. We'll be your guinea pigs"?

Would we say nothing and look away, betting our lives that the treatment will never be used on us but only on people who don't matter so much?

Would we let it be used for another lifetime?

1 comment:

  1. In his book about the psychopharmaceutical industry. "Let Them Eat Prozac". psychiatrist David Healy writes, "One of the chilling things about this story is how a very few people in key positions can determine the course of events and all but shape the consciousness of a generation." The drug industry is much larger than the shock industry, with a lot more money at stake. If a handful of people can shape policy and opinion in the drug world, it is all the more true in the ECT industry. This is true not only for one generation- but across generations.

    The term "special interest group", long used in politics, is now an apt description for a group of scientists who share common financial interests and are taking control of science, acting t protect corporate interests in science by virtue of their medical positions. What we are allowed to know and believe and do about shock is determined by these self-selecting "academic oligarchies", as they have been described so accurately.

    It is a great mistake, but one that many people make, to think that either academics or government employees are free of financial conflict simply because they aren't currently or directly employed by corporations. Today the university research center is no ivory tower, but one of the key players in the special interest group. In this vast and lucrative enterprise, the patients whose brains and bodies are on the line are forgotten. One patient advocate writes:

    " Research stakeholders represent an interlocking directorate of self-interest: the biotech/pharmaceutical industry, university and free-standing research centers, bioethicists, government oversight agencies, and medical journal publishers. This confluence of self-interest groups tightly controls the conduct of research and the oversight process as individuals within the enterprise move freely from one to another position of authority All of these players are financially and professionally interlocked. Independent public advocates are excluded from the process, thereby denying human subjects representation at any juncture."

    The oligarchs monopolize the federal grant money. They publish the articles that become scientific evidence. They decide who else is allowed to get grant money. They oversee the grants. They act as editors and reviewers at the journals. They write the textbooks. They appear in the media and as expert witnesses in the courtrooms. They testify to legislatures. They consult to government agencies. All these activities enrich them directly or indirectly, and contribute to their ability to earn money as consultants to industry and/or owners or shareholders of companies.

    The more they do these things, the more they are considered experts and the more they are allowed to do them. As we enter the second generation of the Public Relations Era ( wherein in facts are at best irrelevant, at worst a hindrance to the craft), they are training the younger ones to think and act as they do. There is no greater triumph for the PR campaign than for the workings of its machinery to become all but INVISIBLE, and for its pronouncements to be accepted as reality at the highest levels of society. The PR campaign to sell ECT has reached this goal.