/ 24 August 2012

Mental health dossier has more than a dose of madness

Members of the team who compile the manual are also hired by big pharmaceutical companies
Members of the team who compile the manual are also hired by big pharmaceutical companies

Early in 2013, the American Psychiatric Association will publish the fifth Diagnostic and Statistical Manual of Mental Disorders. TIt is the big grey book that sits on psychologists' shelves like a wise owl, ready to be consulted to determine what, if anything, is "wrong" with a particular person.

Throughout human history we have had a rather strange relationship with mental disorders. Some cultures have revered the "mad" as spiritual teachers who have been touched by the gods. Others have seen them as witches and killed them, attempted to exorcise the "demons" that infested them, or even dressed them up in amusing clothes and laughed at them.

But with the rise of science it was acknowledged that we could no longer use religion, social pressure or fad to determine whether someone was "mad" (in the case of poor people) or merely "eccentric" (for the more well-off). Thus, beginning in the 1950s, psychiatrists in the United States sought to create an objective and scientific classification for all the psychological and psychiatric (referred to as "psych") problems that affected the American population.

Each manual is intended to be a summary of the best research available so that all psych practitioners have a way of deciding whether or not their patients suffer from anti-social personality disorders.

But there were immediate problems with the manual, and with every manual since. The first problem is that when one a body of research is conglomerated, essentially  a vote is being taken: if most researchers believe that a particular pattern of behaviour is a mental disorder, then they are obliged to include it in the next manual.

This is why, until the fourth version of the manual, published alarmingly recently in 1994, homosexuality was still officially classified as a disorder.

Under apartheid, gay men were often subjected to sexual torture aimed at forcing them to be "straight". It was done because homosexuality was a psychological disorder that needed to be "cured".

The role of public perception plays out in other ways as well. There is an annoying tendency for mild "epidemics" of some disorders to flare up shortly after they have been featured in a blockbuster Hollywood movie. The "popularity" of "multiple personality disorder", now called dissociative identity disorder and never called schizophrenia, in the wake of movies depicting it is something of an embarrassment to psych practitioners. This is not least because no hard facts about the disorder are available and some researchers are not sure whether it exists at all.

A second problem lies in the manual's firm grounding in American psychiatry. Many cultures respond to their mental worlds differently to others. In Western cultures, the belief that forefathers and objects are speaking to you is a sign of schizophrenia. In Native American culture it means you are on a vision quest. In South Africa it means you are being called as a sangoma – you can go through training and registration and build up a practice. In the US, you are more likely to end up living homeless on the street.

But despite these concerns, the manual is still the best conglomeration of the current state of research on mental problems. It is therefore difficult to get away from, no matter in which country you are. Indeed, psychologists and psychiatrists have little choice but to use the manual.

In the latest version, there are big changes afoot. In fact, some of the changes were so radical that, late in 2011, a group of academics wrote an open letter to the manual task force to protest about some of the proposed changes and the way in which they were being implemented.

To date, more than 50 international organisations have formally endorsed the letter and have added their own criticisms to the mix. They include the British Psychological Association, the Danish Psycho­logical Society, the Society of Indian Psychologists, the United Kingdom Council for Psychotherapy, Psychology Italy and the Association of Black Psychologists.

In response, the task force, to its credit, decided that many of the changes that were suggested were valid and scientific and included them.

An unasked question is whether these changes would have been made without the fuss. But a frequently asked question is why the task force hired a public relations firm to regulate perception of the controversy. This is not the sort of thing one normally sees in a scientific debate.

In any event, the task force has taken the furore and the steps it took to resolve it as evidence that it has engaged with science at large and that the controversy is now over. Sadly, this is far from true.

Diagnosis
Diagnosing mental problems is a tricky business and much of it relies on opinion. If a loved one dies and you feel horrible for months afterwards, are you suffering from depression caused by the trauma you suffered? Or are you experiencing a normal, thoroughly human response to the pain of your loss?

It is hard to tell and the more time one spends in psychology, the more it seems to be the study of grey areas. The manual tries to deal with this problem by including, with almost every diagnostic category, the proviso that the problem, whatever it is, must cause "clinically significant distress or impairment".

But the problem is that deciding whether someone is experiencing clinically significant symptoms is essentially left up to the psych practitioner's opinion. So this criterion has not fixed the problem; it has just moved it slightly sideways.

The example of bereavement is relevant because the fifth version of the manual came alarmingly close to classifying mourning as a recognisable mental disorder. In the fourth version, it was clearly stated that a psych practitioner cannot diagnose someone with depression if they have just suffered a personal loss. This is because all the symptoms of depression – sadness, rage, a lack of energy, physical discomfort, bleak mood, a lack of joy in daily activities, too little sleep or too much – are all entirely normal when one is grieving.

But the fifth version initially proposed that depression could be diagnosed within weeks of a person being bereaved.

Think about a time when you lost a loved one. How did you feel for weeks afterwards? And how would you have felt if someone in a white lab coat had told you that you were "supposed to feel better by now"?

The diagnosis has now shifted to a new "disorder" – adjustment disorder related to grief. To be diagnosed with a problem, the individual must experience "symptoms" for at least 12 months, or six months if they are a child.

I count myself lucky that I have never lost anyone to whom I was particularly close, but I know that it is only a matter of time. I cannot help but to foresee that, when the first anniversary of that sad day comes around, I may indeed still be feeling "intense yearning or longing for the deceased, intense sorrow and emotional pain". And I do not think that will be a sign that there is anything "wrong" with me.

One of the most forceful accusations critics of the fifth version of the manual have levelled is that it comes dangerously close to pathologising normal behaviour, and this is what they mean. Some people are devastated by grief and many of they could be helped by psychological support or medication, or both.

But placing a blanket term over everyone who has difficulty adjusting after a tragedy carries with it the assumption that grief is wrong and that we are "supposed" not to feel anything. And adding the proviso that the effects must be disruptive to one's life does not help. Bereavement is disruptive by definition. It cannot be otherwise.

Manufacturing disorders
This theme of pathologising normal behaviour takes a turn for the strange when one examines a new diagnosis: disruptive mood dysregulation disorder. The diagnosis applies if a person has inappropriate temper outbursts three or more times a week and in between outbursts is "irritable or angry".

The apparent target for this diagnosis becomes more obvious when one notices that someone can only be diagnosed with the disorder if they are between the ages of 10 and 18 years.

So after flirting with the idea of pathologising grief, the task force seems firmly committed to pathologising the act of being a teenager. Of course, not all teenagers are rebellious and difficult. Irritability and outbursts of temper are pretty common among the teens of the world. This may not in itself be normal, but is it really fair to point a finger at the teens – and only the teens? What about their parents, their schools, the media, or society as a whole?

The manual does not specify treatments for its disorders. But when one considers that the usual treatment for mood disorders, such as disruptive mood dysregulation dis­order, typically involves some form of medication, one can easily see where this could be heading: a Stepford child, drugged into subservience, dutifully stumbling along to their post as another brick in the wall.

The risk of this fate becomes even more immediate when one considers that the diagnostic criteria for attention deficit hyperactivity disorder (ADHD), the disorder du jour, are being lowered so that diagnosing someone with it is even easier than before. This is despite good research that has suggested that ADHD is already often over­diagnosed and overmedicated.

Ironically, a similar fate seems to await people at the end of their lives, because another new diagnosis – mild neurocognitive disorder – seems to pathologise ageing. Broadly speaking, the disorder is defined as a subtle but noticeable reduction in a person's mental functioning – and that is all it is. In other words, it is the breakdown in cognitive ability that will happen to pretty much all of us as we age.

The most disturbing part lies in the diagnostic criteria: "The cognitive deficits are insufficient to interfere with independence … but greater effort may be required." In other words, it is not really a problem, but somehow it is still a problem.

Remember that the manual is not just describing behaviour in a neutral way. It is a manual of mental "disorders"; everything in here is implicitly "wrong" and needs to be "fixed" and, as with ADHD, research suggests that the elderly may also already be overmedicated. But there is nothing "wrong" with getting old, or being young, or being sad. In fact, everyone goes a little crazy some times, right?

Well, apparently not, because, according to the task force, even going a "little" crazy might be too crazy for them. Behold attenuated psychosis syndrome, in which an individual experiences some of the symptoms of schizophrenia (for example, mild hallucinations, disordered speech) but not enough of them to justify a full diagnosis. This category is not being included as a fully realised disorder, but is instead being suggested for more research to confirm whether it is really a problem or not.

Unfortunately, just including the category often leads people to believe that the category is real and react accordingly. It is referred to as the problem of "reification".

It is a tricky thing to wrap one's head around, so let me summarise it in brutal brevity – if someone in authority says a disorder exists, it is only a matter of time before people who think they have that disorder start coming out of the woodwork to try to get help for it.

Psych practitioners, who are trying to help them, will then diagnose them with the disorder that they think they have, because it is the only thing that seems to fit, even if the original diagnostic category was never accurate to begin with.

One example of this is the phenomenon of multiple personality disorder mentioned above. Another would be the "epidemic" of satanic ritual abuse that swept the US in the 1980s – hundreds of children and adults were diagnosed with trauma resulting from systematic abuse that, it later turned out, had actually never occurred.

Medication
There is a common thread that ties the four new diagnoses mentioned above together: they are all typically treated with medication.

The development of antidepressant and antipsychotic drugs has been a huge boon to humanity. Before their arrival, many mental disorders, such as schizophrenia, which once promised a slow, inexorable descent into debility and madness, are now thoroughly treatable. Major depressive disorder can put people into a mood so bleak that they lack the energy to kill themselves, even though they dearly wish they could. In these cases, anti­depressants can be a literal lifesaver.

So why make an issue out of using them? Well, the first problem with psychotropic medication is the same as with every medication – side effects. Psychiatric drugs are no joke. The side effects from them cover everything from mild headache and mood swings to incapacitating abdominal cramps, heart damage, diabetes and even death. They should be prescribed with caution – and that is putting it mildly.

The second problem is reliance. Once someone has begun taking a psychiatric drug, it is difficult for them to get off it, so they often stay on it for extended periods, even though the side effects of long-term use are poorly understood and may be horrific.

They also provide an incentive for treating the symptoms instead of the problem. If a depression stems from an abusive relationship, Prozac will not help.

Some research suggests that antidepressants simply do not work, unless the person taking them also has access to some sort of emotional support. It could be family and friends, a social club, a church or a therapist. But there needs to be some sort of interaction that offers something a bit more meaningful than a statistically significant increase in the serotonin levels in the brain.

But the huge advances that medical science has made against diseases that were once thought ineradicable has created a culture that feels all problems can – and should – be solved with a pill. Not too long ago, tuberculosis meant a slow, certain death. These days it means the hassle of getting to a doctor and remembering to take some tablets. But multidrug-resistant TB has reminded us that there are still problems that are not so easily tackled and many mental problems are creatures so different from physical ailments that it is sometimes hard to see any similarities at all.

The open letter to the task force mentions this explicitly. It points out that most psychological dis­orders cannot be exclusively tied to any biological factor. Of course we know that depression, for example, is closely linked to changes in brain chemistry, but we also know that some types of depression can be treated by simply changing the way people think about their problems. It seems obvious, and scientific, to conclude that the mental, physical and social are intertwined, but are not the same.

A nod to this fact was explicitly included in the fourth manual. It was stated that people should not be  diagnosed with a disorder if their "symptoms" stemmed from conflict between the individual and the society in which they live. Consider how we would have felt if protesters, angry about apartheid, had simply been put on Valium to calm them down.

But this important separation between the individual and the society that surrounds them was initially going to be removed from the fifth manual. It was replaced later, after outside groups objected, but an ongoing preference of the biological over the psychological and social has continued to characterise the new manual. The task force initially proposed changing the very definition of mental disorder to one that rests on "psychobiological" factors, implicitly stating that biology is at the heart of all mental problems.

One does not need to be a mind-body dualist to acknowledge that there are many things outside the physical body that affect behaviour – social factors, personal relationships, economic issues, political pressures, education, culture, environmental problems. All have an impact on one's mental wellbeing. Can all  these factors be reduced to mere biology? Probably. Would that be in any way helpful or meaningful? No.

Conflict of interest
In light of this argument, it may be difficult to understand why the task force has been working to add so many subtle inferences to the primacy of biological factors in mental disorders. The idea that our biology is influenced by our environment seems obvious and irrefutable. Why then the added focus on the physical?

An answer may be found in the highly disturbing closeness between many members of the task force and the pharmaceutical industry, whose drugs will be used to treat these disorders.

Of course, it is neither un­usual nor unethical for drug companies to hire the best minds they can get when testing or promoting new medicines. After all, the reasons why the many members of the task force were chosen is because they are among the most knowledgeable experts in the world within their particular fields.

Unfortunately, that is the problem, in a nutshell. When the planet's greatest medical minds are being regularly hired and lavishly remunerated for work they have done with giant chemical corporations, it raises the grim zombie called conflict of interest.

By one count, 70% of the members of the task force have admitted ties with "big pharma". This includes 66% of the mood disorders and 80% of the psychotic disorders work groups. It may be a coincidence that these are the two types of disorders most commonly treated with medication. Then again, it may not.

I am not accusing anyone of anything unethical, but it is an empirically verified fact that close relationships promote bias, even if only at a subconscious level.

To their credit, the task force acknowledges this and has enforced guidelines about how much money and other financial incentives a member may accept from a pharmaceutical company or a related institution. But there are problems with the steps they have taken as well.

The first is that the financial contributions have been restricted to "only" $10 000 in direct payment plus another $10 000 in stock profits a year, plus a further $50 000 in stocks themselves. An individual expert may work on the manual for as long as five years, which means during that period they could be paid up to $150 000.

The American Psychiatric Association clearly feels that this is not sufficient to affect someone's judgment. This raises two further questions. First, are they kidding? And second, how much money were they being paid before they joined the task force?

This is linked to a different problem, because there is nothing to stop a company from paying a task force member for "services rendered" after their work on the task force is completed. In the US, there already exists a "revolving door" between government and business to the detriment of the country as a whole, and there is no reason why similar actions could not corrupt the manual as well.

Last, although task force members are required to list the relationships they have with corporate entities, they are not required to explain exactly what they have been doing for them.

Many academics are employed for speaking engagements in support of a particular company or product. Some of these are honest opinions or academic debates, but others are simple marketing exercises. The academic will read material written and provided by the company that pays them; they are merely there as an official-looking microphone for the company's words.

Among the disclosures of financial interest the members of the task force must submit, these speaking engagements fall under the euphemistic heading of "honoraria", so it is impossible to tell exactly what services they have been performing.

Peer review
The problem of conflict of interest does not only apply to the manual but to all avenues of science. But ­science already has an effective way of dealing with it – peer review.

During a peer review process, documents that are about to be published are distributed to other knowledgeable academics who independently review them and provide their thoughts on how the document can be improved. It is a fundamental and incredibly important part of any ­scientific endeavour.

So it is no surprise that the authors of the open letter asked the task force to submit the manual for some sort of external and independent peer review before it was finalised.

The task force refused. In a letter penned in January this year, the association stated that an organisation capable of reviewing the task force's work simply did not exist.

The task force has assembled an impressive collection of world-class academics with good credentials. But that is not the point. Even if the manual was sent for review to a "lesser" organisation whose feeble membership could do nought but moan in appreciation of the sterling synthesis of research they beheld, it would still be valuable evidence that the need for independent peer review was being taken seriously.

Second, their argument is false. No one asked them to identify an organisation that was the equal to the task force. There is no reason why specific sections could not have been sent to individual experts.

And given the high stakes involved, it would be nice to feel that every effort had been made to produce this important piece of scholarship in as precise, scientific and neutral a way as possible.

On the one hand people's lives, the health of their families and their sanity itself are at stake. On the other is a pharmaceutical industry that is worth a conservatively estimated half a trillion dollars a year.

Last year, 34-million prescriptions were written for Prozac alone. Each prescription cost between $30 and $130. A slight increase in the number of people being prescribed the drug, say for disruptive mood dysregulation disorder, for example, could net millions of dollars in additional profit a year for the foreseeable future.

For both these reasons, it is vitally important that the task force be held to the highest possible scientific and ethical standards. Great work has gone into the manual and important steps have been taken to support ­ethical standards, but many questions remain unanswered and many problems seem certain to arise.

Andrew Verrijdt is an educational psychologist

 


Manuals I to V

1948: The World Health Organisation produces the sixth International Classification of Disease. It includes mental disorders for the first time.

1952: Manual I. Based on the United States Army's classification system. Contained 106 mental disorders.

1968: Manual II. Includes 182 disorders. Classifications interpreted largely through psychodynamic theory (mental problems have mental causes).

1970: Sixth edition of manual II. Gay rights activists protest the inclusion of homosexuality as a disorder. Diagnosis retained – reframed as "sexual orientation disturbance".

1980: Manual III. Includes explicit diagnostic criteria, multiaxial system of classification and steps towards neutrality in diagnosis. Homosexuality is excluded unless as "ego dystonic homosexuality" (homosexuality that makes you feel bad).

1994: Manual IV. Includes 297 disorders; homosexuality is not one of them. Includes specification that something must cause "significant distress or impairment" to be a disorder.

2013: Manual V to be published.

 


Cultural dissonance exists

Cultural perceptions of mental disorder are usually not taken into account in Western biomedical circles, and bewitchment (umtakhati), hysteria (ufufunyana), symbolic influences (such as snakes symbolising ancestors, relevance of lightning) and messages from ancestors (amadlozi) in dreams are not popularly explored. But they are understood by traditional healers.

A Western framework might diagnose these experiences as auditory hallucinations, psychosis or schizophrenia, and a psycho- practitioner could prescribe allopathic medication, which might not be appropriate for an African person with traditional beliefs.

African traditional healers know how to explore the whole person, taking into account the family, the community and ancestral influences.

African people are sometimes embarrassed to tell a Western practitioner about their traditional belief systems. They often consult both forms of practitioners because they believe in the syncretism of Christianity and African spiritualism without feeling any dissonance about it.

Cognitive and personality assessments are usually standardised on European or American groups of children or adults. When applied to African people, the results are sometimes inaccurate and might work against the person.

They are also socially inappropriate, because a typical South African's anxiety score in a personality test might be elevated. This might not be intrinsic or idiosyncratic to that person – it might demonstrate fear as a result of crime and might be typical of most, or many, South Africans. This might occur when parents are assessed for care and contact situations, and judgments might be inappropriate.

Similarly, African children might fare badly on academic or cognitive tests because the tasks are Eurocentric and do not engage  typically African skills such as those involving stones, sticks or clay moulding, at which some African children are particularly adept.

Some African children are also very street- and community-wise, but Eurocentric tests do not credit them for this. The tests involve tasks such as building puzzles that some Africans are not exposed to. – Sally John

Sally John is a counselling psychologist who has completed a PhD in indigenous African psychology