Can We Replace Misleading Terms Like 'Mental Illness,' 'Patient,' and 'Schizophrenia'

04/05/2015 04:50 pm ET | Updated Jun 05, 2015

"When I use a word, Humpty Dumpty said in rather a scornful tone, it means just what I choose it to mean -- neither more nor less. The question is, said Alice, whether you can make words mean so many different things. The question is, said Humpty Dumpty, which is to be master - that's all." -- Lewis Carroll, Through the Looking Glass

You may recall that Humpty's complacent confidence in the power and precision of his words just preceded his very great fall -- and all the king's horses and all the king"s men could not repair the damage done.

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 DSM IV was intended to be a very conservative document -- we rejected all but two of 94 suggested new diagnoses. We also field tested carefully to ensure there would not be dramatic and unexpected impacts on rates.

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.

We made Humpty's fundamental error, believing it possible to remain master of our words and to control their usage by, and connotations for, others. Words tend to take on a life of their own, often enough becoming ambiguous and misleading in the process. And once an incorrect usage acquires the tenure of long and wide acceptance, it can be very difficult to control or to replace.

This brings us to some of my least favorite words that paradoxically I find myself unavoidably using a lot -- "mental illness," "severely mentally ill," "patient," "schizophrenia." Bad as they are, I haven't ever been able to come up with better replacements.

"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.

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 terms "severely mentally ill" or its alternate, "seriously mentally ill" are not only awkward tongue twisters to say, but also misleading in the same way and potentially stigmatizing. They may be taken to mean that the person so labeled is destined to a bad outcome and/or that medication will be not only necessary in the treatment, but also sufficient. But these terms also have no easy replacement and one or the other is necessary because without some clearly recognizable designation, this shamefully neglected group would be even more ignored and shamefully neglected.

"Patient" has come to imply participation in a hierarchical relationship that brings with it little responsibility for shared decision making. It is a mistake when doctors make unilateral decisions for their patients, because peoples' needs, tastes, and wishes vary so much and there is usually such uncertainty about which treatments from a menu of plausible options might best suit that particular person.

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." And surveys show that many "patients" actually prefer to be called "patients."

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.

Anne Cooke. Ph.D is also interested in the power of words. She led a project "Understanding Psychosis" on behalf of the British Psychological Society Division of Clinical Psychology. She and I have debated its pros and cons on another post.

Dr. Cooke writes: "The language we use is important not so much in its own right but because it reflects -- and also shapes -- the way we think about things: our 'guiding ideas.' As you rightly point out, Allen, calling certain emotional states, or ways of thinking and acting 'mental illnesses' is just one way of thinking about them, rather than the only way. All we really know is that people sometimes feel or act in certain ways: the rest is our interpretation.

If I feel sad and hopeless, and stay in bed all day staring at the ceiling, I am likely to be diagnosed with depression. I may be told that I have an illness, and this way of understanding my situation does have its advantages. For example, I can go to my family doctor and hopefully find a sympathetic ear, maybe some tablets to take the edge off things and perhaps be referred on to someone I can talk to. If I'm feeling so bad that I can't work, I can take time off sick and even claim benefits. So the idea of mental illness definitely has its plus sides: it gives us a way of talking about difficult things and a framework for offering help.

However, I often wonder whether overall, the whole enterprise of finding medical labels and drug "treatments" for what are often arguably problems of living, actually causes more problems than it solves. To continue the example, thinking of myself as mentally ill might well be a huge blow to my self-confidence. I might conclude that there is little I can do to help myself except to keep taking the tablets. Depending on my diagnosis, I might begin to fear turning into people's image of a mental patient -- strange, unable to function and perhaps even potentially violent. Other people who know that I am 'mentally ill' might be prejudiced and treat me as inferior or even frightening.

I would also lose some of the human rights I had always taken for granted: people with 'mental disorders' are the only group that can be locked up without trial and injected with drugs against their will.

As you say though, Allen, we may be naïve to think that logical argument about language and concepts is likely to change anything. There are so many vested interests at stake on all sides. Individually and as a society we want, or perhaps need, to believe that professionals and technology have the answers.

It's also clear that the mental health industry certainly isn't going to argue. The American Psychiatric Association profits very directly from the idea that certain experiences are diagnosable 'illnesses'. It makes millions of dollars every year from its publishing monopoly on DSM.

Drug companies profit to the tune of billions, not millions, by conducting misleading marketing campaigns selling the notion that expectable life problems are DSM disorders due to a chemical imbalance and requiring a pill solution.

I disagree with you, actually -- I think there are alternatives to terms like 'mental illness', even for very severe problems. There is a wonderful thing called everyday English. Why not just use people's own language? That way we enable people to define their own experiences and avoid imposing our own ideas on them. If someone hears voices or appears out of contact with reality, why not just say that? Even if the experiences are severe, long-lasting and disabling, why invoke terms like 'schizophrenia' or 'mental illness' that as soon as we use them, impose a particular interpretation of the situation? This is the approach we took in the British Psychological Society report 'Understanding Psychosis and Schizophrenia.'

We deliberately chose not to call the report, say 'The causes and treatment of schizophrenia and other psychoses.' Such a title would have reflected only one possible set of guiding ideas about the phenomena in question, namely a medical one. We even considered not using the terms 'psychosis' or 'schizophrenia' in the title. However, since they are the terms people currently often use, we compromised by using everyday language for the subtitle: 'Why people sometimes hear voices, believe things others find strange, or appear out of reality - and what can help.'

We explain our use of language at the beginning: 'There is considerable debate about the most helpful way of referring to the experiences described in this report. The different terms used by different people reflect the more general debate...about the nature and causes of these experiences. Traditionally, experiences such as having extremely suspicious thoughts (paranoia) or hearing voices that no-one else can hear, have been seen as signs of mental illness, for example schizophrenia or bipolar disorder. People who experience them have been referred to as 'patients' or 'sufferers'. Whilst some people find this a helpful way of understanding what is going on, others do not, and many people do not see themselves as having an illness. Indeed, over the past twenty years it has become clear that there are many people in the general population who have these experiences but never need any kind of mental health care....We have attempted to use terms which are as neutral as possible, and which do not imply that there is only one correct way of understanding these experiences'."

Thanks, Anne. 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.

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.

The management of severe psychiatric disorder is often an emergency. Missing a delirium, mania, psychotic depression, or a substance or medical illness etiology can have catastrophic effects The next steps in management differ dramatically depending on which label fits best. Recommending the sacrifice of crucial diagnostic distinctions in favor of everyday language simply won't cut it in dealing with the 'severely ill'. Too much crucial information is lost.

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.

Afterword from Anne: "Thanks Allen. If you'll allow me one parting shot, to question the value of diagnostic labels is very different to concluding that someone's experiences have no clinical significance. When people have distressing and disabling experiences, professionals need to help in any way we can. All the more reason to sit down with the person and work out between us what might be contributing to their particular problem and what might help, rather than imposing a framework of understanding, a label and a treatment that the person may not find helpful."

Afterword from me: Making a diagnosis is only one small part of getting to know the 'patient', certainly necessary but very far from sufficient. I don't trust clinicians who restrict themselves to reductionistic diagnostic interviews, but I also don't trust clinicians who can't make an accurate diagnosis. Diagnosis and empathy are necessary partners in any therapeutic relationship, fully complementary and in no way incompatible.

Allen Frances is a professor emeritus at Duke University and was the chairman of the DSM-IV task force.