On April 5, Allen Frances MD, published an article on the Huffington Post blog. The title is Can We Replace Misleading Terms Like ‘Mental Illness,’ ‘Patient,’ and ‘Schizophrenia’ It’s an interesting piece, and it raises some fundamental issues.
Here are some quotes from the article, interspersed with my comments.
“Those of us who worked on DSM IV learned first-hand and painfully the limitations of the written word and how it can be tortured and twisted in damaging daily usage, especially when there is a profit to be had.”
The fact that words can acquire multiple, and even contradictory, meanings is well known to most high school graduates. People of all walks of life are generally sensitive to this reality, and take steps to clarify their meanings, especially with regards to words that are known to be ambiguous.
In the above quote, Dr. Frances is, I believe, implying that he and the other members of the DSM-IV work group chose their words carefully, but that their meanings were corrupted in “damaging daily use”. Additionally, he appears to ascribe blame for this process to the drive for profits, presumably on the part of pharma.
But this is not consistent with the fact that ambiguity and a general lack of verbal precision are primary characteristics of successive revisions of the DSM, including DSM-IV. In DSM-IV’s criteria for attention deficit hyperactivity disorder, for instance, the term “often” occurs in every criterion item, even though its lack of clarity, and its potential for abuse, are obvious.
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“This did not stop the widespread misuse of the terms Attention Deficit Disorder, Asperger’s Disorder, Bipolar Disorder, PTSD, Paraphilia and others. The lesson: If some wording in DSM can possibly be misused for any purpose, it almost certainly will be.” [Emphasis added]
Here again, the impression being given is that Dr. Frances and his team defined these various terms judiciously and with precision, but that others came along afterwards and “misused” these carefully crafted definitions for their unstated, but presumably venal, purposes, while the injured innocents of the DSM-IV work groups could only watch in dismay from the sidelines.
The reality, of course, is quite different. All of the definitions, in every edition of the DSM, are notoriously vague, and are subject to diverse interpretation. This vagueness has consistently served the interests of psychiatry in expanding its scope and influence. DSM-IV was simply one of the steps in this process, and the notion that Dr. Frances and/or other members of the work group were naïve to this dynamic is simply not credible.
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“‘Mental illness’ is terribly misleading because the ‘mental disorders’ we diagnose are no more than descriptions of what clinicians observe people do or say, not at all well established diseases. For example, the term ‘schizophrenia’ just describes a heterogeneous set of experiences and behaviors; it doesn’t at all explain them and eventually there will be hundreds of different causes and dozens of different treatments. ‘Schizophrenia’ is certainly is not one illness.”
This is in marked contrast to what Dr. Frances and his task force wrote in the DSM-IV section on schizophrenia:
“The essential features of Schizophrenia are a mixture of characteristic signs and symptoms (both positive and negative) that have been present for a significant portion of time during a 1-month period (or for a shorter time if successfully treated), with some signs of the disorder persisting for at least 6 months (Criteria A and C).” (p 274)
The clear implication here is that “Schizophrenia” (with a capital S!) is a single unified entity that can be recognized by its characteristic signs and symptoms.
In addition there are numerous phrases and sentences that imply clearly that, as far as the authors were concerned, schizophrenia is a unified condition. These include “The individual with Schizophrenia…”; “Individuals with Schizophrenia…”; “The onset of Schizophrenia…”; “…the symptoms of Schizophrenia…”; ”…prevalence of Schizophrenia…”; “…age of onset for the first psychotic episode in Schizophrenia…”; “…course and outcome in Schizophrenia…”; etc… In no part of the DSM-IV entry is there the slightest intimation that “schizophrenia” is anything other than a single unified “disorder”.
So again, it seems reasonable to ask: what has changed? Is there some new science that has debunked the old unified illness notion? Or is it simply the case, as many of us on this side of the issue have maintained for years, that the unified illness notion was never more than a convenient psychiatric fiction, devoid of any scientific underpinning, which Dr. Frances is now disavowing.
Note particularly in the above quote from Dr. Frances’ current paper, the phrase: “…it [schizophrenia] doesn’t at all explain them [the problematic experiences and behaviors]…”
Here again, this represents a marked departure from DSM-IV, where schizophrenia (the unified disorder) is clearly presented as the cause of the so-called symptoms. In the section on schizophrenia (p 277) it states:
“Although quite ubiquitous in Schizophrenia, negative symptoms are difficult to evaluate because they occur on a continuum with normality, are nonspecific, and may be due to a variety of other factors (e.g., as a consequence of positive symptoms, medication side effects, a Mood Disorder, environmental understimulation, or demoralization).”
The statement that negative symptoms may be due to “other factors” clearly implies that in other cases, they are due to (i.e. caused by) schizophrenia. Note, incidentally, that one of the other factors that is given as causative of negative symptoms is “a Mood Disorder”, again clearly implying that those “disorders” also are being conceptualized and presented as the causes of the “negative symptoms”.
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“The ‘mental illness’ term also lends itself to a simple-minded biological reductionism that pays insufficient attention to the psychological and social factors that are crucial in understanding anyone’s problems. Everyone complains about ‘mental illness,’ but nobody has come up with a better substitute.”
The DSM-IV entry on Schizophrenia runs to 16 pages – p 274-290. In all of that text, there is only one reference to environmental factors:
“Although much evidence suggests the importance of genetic factors in the etiology of Schizophrenia, the existence of a substantial discordance rate in monozygotic twins also indicates the importance of environmental factors.” (p 283)
and there is no specific reference to “…psychological and social factors that are crucial in understanding anyone’s problems.” Additionally, on page 275, DSM-IV states:
“…positive symptoms may comprise two distinct dimensions, which may in turn be related to different underlying neural mechanisms…”
which at the very least suggests a “simple-minded biological reductionism”. So, again, what we have is Dr. Frances lamenting a situation of which he and his colleagues were some of the primary architects.
And the old chestnut —we all hate the term “mental illness, but alas, nobody has come up with a better substitute.” This, I suggest, is less than candid. There are lots of better (i.e. more accurate) terms, e.g., problems of thinking, feeling, and/or behaving. It is difficult to avoid the conclusion that psychiatrists cling to the term “mental illness”, not because they can’t come up with anything better, but rather because it serves as an integral part of the spurious medicalization of these problems. If the concept of “mental illness” were to be eliminated, as it should be, then psychiatry’s justification for its role in this area would also go. The notion that the APA, with all its talent and its prestigious PR company, couldn’t come up with a better term if they wanted to, is simply not remotely credible.
Note also that Dr. Frances’ concern about the term “mental illness” is because “…it lends itself to a simple-minded biological reductionism that pays insufficient attention to the psychological and social factors…”. And this, of course, is a valid concern. But it is not the core concern. The core concern with the term “mental illness” is that the problems it purports to delineate are not illnesses at all. The spurious medicalization of these problems is the fundamental error from which all of psychiatry’s excesses and venality flow. It is also the issue that they simply refuse to address.
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Dr. Frances expresses some reservations about the use of the term “patient”, because it implies “…participation in a hierarchical relationship that brings with it little responsibility for shared decision making.” Then he continues:
“But I have also never been comfortable with cold, market-sounding terms like ‘client,’ ‘consumer,’ ‘customer’ or ‘service user.’ These are business terms and lack the connotation of caring and responsibility associated with helping a ‘patient.’…Unless someone comes up with a better term, I think it would be better to rehabilitate the connotation of ‘patient’ rather than replace it, making clear that it implies full partnership in a therapeutic relationship.”
Here again, I suggest that Dr. Frances is being less than candid. Social workers refer to the people they serve as “clients”, and the word has never suggested connotations of coldness or market place values in that context. In fact, in my experience, social workers, other than those who have been co-opted by psychiatry, are arguably the most compassionate and client-centered professional group in this field. And there are lots of other words, e.g. – and this is pretty radical –”person”. And in fact, Dr. Frances’ own DSM-IV routinely uses the word “individual”.
If, as appears to be the case, Dr. Frances is arguing that psychiatrists cling to the term “patient” because it reflects their values of caring and warmth, all I can say is that I find this difficult to reconcile with the fact that the 15-minute med check has become psychiatry’s standard practice, and that the psychiatric falsehood – “a chemical imbalance just like diabetes” has been, and continues to be told to countless millions of psychiatric “patients”.
Dr. Frances expresses the belief that the word “patient” should be rehabilitated to make it clear that the term implies “full partnership in a therapeutic relationship”. But he’s neglecting the fact that the term “patient” already has a perfectly valid and generally accepted meaning: a person who is sick and who goes to a physician for assessment and/or healing. And this, I suggest, is precisely why psychiatrists, including Dr. Frances, cling to the term – because when used in the psychiatric context, it embodies within its meaning the fiction that the problems “treated” by psychiatrists are illnesses requiring medical intervention.
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Dr. Frances then quotes from a debate that he had with Anne Cooke PhD, editor of the BPS report Understanding Psychosis. He notes that they are in agreement on some issues.
“We certainly join forces in worrying that loose usage and commercial gain have extended the terminology of mental ‘illness’ to many expectable problems of everyday living that are much better explained by psychological factors and social context and better described using everyday language.”
But:
“…we part company when you suggest that all diagnostic labels can be easily and safely. Your suggestion would have disastrous consequences for those who have severe psychiatric problems.”
There’s an obvious typo here, but it seems clear that Dr. Frances is stating that there would be disastrous consequences if diagnostic labels were dispensed with in the case of people with “severe psychiatric problems”.
There are two noteworthy points here. Firstly, Dr. Frances has started referring to the DSM “diagnoses” as “diagnostic labels“, which is interesting. Secondly, his use of the term “severe psychiatric problems” implies the existence of a discreet, identifiable set of problems, in the same way as the phrases “severe cardiac problems” or “severe kidney problems”. In fact, this is not the case. The DSM-IV definition of a mental disorder embraces all significant problems of thinking, feeling, and/or behaving, including expectable problems of everyday living. If an expectable problem of everyday living, e.g., bereavement, crosses a vaguely defined threshold of significance, then it is, by Dr. Frances’ own DSM-IV definition, a psychiatric problem. And if it crosses an equally vaguely defined threshold of severity, then it becomes a severe psychiatric problem.
But even if we set that issue aside, the question still remains as to why dispensing with psychiatric “diagnoses” would result in disastrous consequences. Dr, Frances tells us why.
“Here’s why: An adequate differential diagnosis of delusions and hallucinations requires full consideration of whether the problems are best described as: ‘Substance Induced Psychotic Disorder’, ‘Psychotic Disorder Due To A General Medical Condition’, “Delirium’, ‘Dementia’, ‘Schizophrenia’, Brief Psychosis’, Delusional Disorder’, ‘Bipolar Disorder’, ‘Major Depressive Disorder’, ‘Catatonia’, Obsessive Compulsive Disorder’, or ‘Sleep Disorder’. Each of this has different implications and calls for different actions. Only when all have been ruled out, can one conclude before that the experiences have no clinical significance and can be described adequately with everyday language.”
So in plain “everyday language”, what Dr. Frances is saying is this: If a person is expressing delusional beliefs and hallucinating, we need to explore the nature and causes of the delusions and hallucinations if we want to adequately define and identify the problem. So we have to compare the precise details of the individual’s presentation with the various DSM entities mentioned in order to get the correct “diagnosis”. But he’s already told us that one of the “diagnoses” (schizophrenia) is merely a heterogeneous set of experiences and behaviors. So it’s difficult to imagine what benefits would accrue from this kind of “differential diagnosis”, over and above a description of the problem in plain language. Is Dr. Frances suggesting that the statement: John is hallucinating and paranoid because he has been using PCP, is less informative than the statement: John has Substance-Induced Psychotic Disorder? It’s also difficult to imagine what “disastrous consequences” might result from the observation that Mary is expressing delusional beliefs because of a brain tumor, that would be averted by the formula Mary has Psychotic Disorder due to a general medical condition.
In fact, it is a general contention on this side of the issue that psychiatric “diagnoses” militate against the exploration of the nature and causes of the presenting problems, in that psychiatrists routinely terminate this kind of enquiry once they have determined the “diagnosis”. And these are the very “diagnoses” that Dr. Frances earlier conceded are purely descriptive with no explanatory significance.
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“Labels can help a great deal. They can hurt a great deal. They can provide clarity, but they can also badly mislead. The words we use in mental health all carry the heavy baggage of misleading and potentially stigmatizing connotation. They are vastly overused to describe mild problems of everyday life better described with everyday language. But we need diagnostic labels for the ‘severely ill’ and all suggested replacements are much more harmful than helpful.”
So Dr. Frances concedes that the words used in mental health are vastly over-used to describe “mild problems of everyday life”, but once again, he doesn’t seem to be acknowledging that his own DSM-IV was one of the great contributors to this process. Psychiatric proliferation and expansion were both well under way by the time he convened his work force, but his final product endorsed every single aspect of DSM-III that had enabled and facilitated the expansion, e.g.:
- the adoption, with only minor, inconsequential changes, of DSM-III’s all-embracing definition of a mental disorder;
- the use of inherently vague language in the criteria sets;
- the use of polythetic (two out of five, six out of nine, etc.) criteria sets;
- the decision not to revert to DSM-I’s widespread use of the term “reaction”, which recognized that the problems being addressed were reactions of the individual to psychological, social, and biological factors;
- the insistence, in the definition of a mental disorder, that the problems reside “in an individual”, as opposed to the person’s circumstances or environment;
- the extensive use of the “not otherwise specified” (NOS) category, which essentially enabled psychiatrists to expand the so-called nosology more or less as they wished.
In addition to this, DSM-IV introduced specific innovations that also facilitated expansion of psychiatric turf into “the problems of everyday life.”
Firstly, it was DSM-IV that made it possible for an individual to be labeled “bipolar” without ever having displayed a manic episode.
Secondly, there occurred in DSM-IV a general liberalizing of the criteria for many of the so-called diagnoses. “ADHD” is a good example. DSM-III listed 14 criteria items for this label; DSM-IV listed 18. One DSM-III item was dropped. The additional five items in DSM-IV are:
“1 (a) often fails to give close attention to details or makes careless mistakes in schoolwork, work, or other activities.” (p 83)
This is almost a defining feature of early childhood.
“1 (e) often has difficulty organizing tasks and activities”
Again, a fairly common attribute of young children.
“1 (f) often avoids, dislikes, or is reluctant to engage in tasks that require sustained mental effort (such as schoolwork or homework)”
Note the use of the word “or”. So if the child avoids, dislikes or is reluctant to do his/her homework, this criterion is endorsed. I suggest that very few children actually like doing homework!
“1 (i) is often forgetful in daily activities” (p 84)
Again, the pathologizing of the normal.
“2 (c) is often ‘on the go’ or often acts as if driven ‘by a motor'”
The use of colloquialisms here is especially interesting, in that expressions like “always on the go” and “like he’s driven by a motor” are things that parents often say about their young children without any pathologizing connotations or intent. By including these expressions in this list of “symptoms”, Dr. Frances and his team have effectively pathologized these descriptors, and brought psychiatric scrutiny to bear on children so characterized.
In addition, the following fairly extreme item in DSM-III
“(14) often engages in physically dangerous activities without considering possible consequences (not for the purpose of thrill-seeking), e.g., runs into street without looking” (p 53) [Emphasis added]
was liberalized in DSM-IV to the much more banal
“2 (c) often runs about or climbs excessively in situations in which it is inappropriate (in adolescents or adults, may be limited to subjective feelings of restlessness)” (p 84)
In DSM-III, the “age of onset” had to be before the age of seven. In DSM-IV, this requirement has been eased to “Some hyperactive-impulsive or inattentive symptoms that caused impairment were present before age 7 years.” [Emphasis added] (p 84)
And, perhaps most significantly of all, in DSM-III the label ADHD is clearly conceptualized as pertaining to childhood. DSM-IV, however, states:
“In most individuals, symptoms attenuate during late adolescence and adulthood, although a minority experience the full complement of symptoms of Attention-Deficit/Hyperactivity Disorder into mid-adulthood. Other adults may retain only some of the symptoms, in which case the diagnosis of Attention-Deficit/Hyperactivity Disorder, In Partial Remission, should be used. This diagnosis applies to individuals who no longer have the full disorder but still retain some symptoms that cause functional impairment.” (p 82)
In the light of all this, it is difficult to accept Dr. Frances’ contention that the proliferation and expansion of psychiatric “diagnoses” was not an integral part of his, and psychiatry’s overall plan.
And incidentally, psychiatry’s usual response to this particular criticism is that they must update the criteria, as more knowledge is gained about the “illnesses”. But this is untenable. The only definition of the “illness” is the one given in the DSM. There is no deeper entity to which the criteria refer. What psychiatrists call ADHD is nothing more than a loose clustering of vaguely described habitual behaviors and omissions. Psychiatry can add to, or modify, the list at will. In stark contrast to real medicine, there is no reality to which these additions or modifications must conform. If the APA decides that “…is often forgetful in daily activities” is a “symptom” of the “illness” known as ADHD, then that decision makes it so. And if the decision represents a liberalization of the criteria, then, literally overnight, more people will now “have” the “illness”. And given that this process has been going on for the past fifty years, it is difficult to avoid the conclusion that it is intentional.
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Dr. Frances’ position in this and other recent papers appears to be that in general, psychiatric “diagnoses” and “treatment” are OK, but that they are being overused by unscrupulous practitioners with the encouragement of pharma, and perhaps other monied interests.
And of course the expansion of psychiatric “treatment” is indeed a huge problem. But it is a problem of Dr. Frances’ own making – a fact which, to the best of my knowledge, he has never conceded.
But, even more importantly, the expansion is not the critical issue. The central issue is the spurious medicalization of non-medical problems in the first place. There are no more grounds for considering severe depression an illness than there are for mild depression. Severe and persistent inattentiveness is no more an illness than mild or transient inattentiveness.
It is from this spurious medicalization that all of psychiatry’s excesses flow. Once psychiatry recognized that they could create illnesses by fiat, then the door was opened, and remains open, for unlimited expansion and pathologizing. And Dr. Frances’ DSM-IV was a major – and perhaps the major – step in this process.