Does Psychiatric Labelling Cause Stigma?

Mad in America have a post titled "Stigma Associated with Labeling, Not Behavior", which links to a paper reporting a study conducted by some of my colleagues at CUNY. Unfortunately the post is short and does not discuss the content of the study or its implications for the relation between diagnosis and stigma. The paper itself is stuck behind a paywall, so many people who might be interested won't have access to it. This post is a detailed look at the study and its implications for diagnosis.

What would you think if you read the following description?:

"John is a shy 18-year-old, white, male high school senior who was doing fine until about 6 months ago, with close friends, an A to B average in school, and an interest in movies and basketball. In the past 6 months, John began to stay up most of the night and sleep during the day, showering less and withdrawing from  friends and family. John began to feel as if people in the neighbourhood were looking at him more, which made him uncomfortable. When nervous, John sometimes thought he heard his name in the wind, and late at night he sometimes briefly felt a presence even though no one was there. John is interested in politics and is preoccupied with thoughts about the influence of television and mass marketing on people. In the past month, John has sometimes refused to go to school and spends most of his day alone in his room. 

In terms of his family, John’s mother was hospitalized 25 years ago for a mental illness, which she promptly recovered from and which has never returned."

This is a vignette which Anglin and her colleagues presented to the undergraduate students participating in their study. They did not provide an explanatory label in the description, but instead asked their participants "What label would you use to describe John?" Alongside this question, they also administered questions from the "Attribution Questionnaire", a measure of fear, avoidance and perceived danger in relation to mental health in which higher scores indicate a greater degree of each. This was their measure of stigma. You can read the questionnaire for yourself on page 10 of this document.

The researchers then grouped the labels provided by their participants into "labels associated with psychosis" (i.e. "paranoia", "mentally ill", "crazy"); "labels associated with other non-psychotic diagnoses" (i.e. "depressed", "anxious", "bipolar") and "non-psychiatric labels" ("afraid", "confused", "weird"), which allowed them to compare the type of label provided with the extent of the stigma. This is the results table from the paper that reports the study:

Several interesting things emerge. The first is that when statistical analysis was conducted, only one of the reported differences was found to be significant (in the sense that there was a less than 5% probability that it could have emerged by chance alone): the difference between "Psychotic-like" labels and "Non-diagnostic" labels on the dimension of "Fear", which suggests that people feel more fearful of those they think of as "Psychotic" than those they don't, even when their behaviour is the same. This is important. I have previously argued that opponents of diagnosis need evidence to validate their claim that stigma is caused by the label and not the behaviour. This result certainly contributes to that evidence. 

However, the negative findings (those differences that were found not to be significant) are just as interesting for the debate. It is notable, for example, that the increases in stigma are associated with "Psychotic-diagnostic labels" rather than diagnositic-labels per se. This suggests that, contra to the over-general Mad In America headline, while some diagnoses are stigmatising (those associated with psychosis), others may in fact be relatively benign. Perhaps (and I am speculating here) while "psychosis" or "Schizophrenia" are confusing terms which cast little light on a person's predicament, other labels like "depression" or "anxiety" help us to understand other people's situation and act as protective mechanisms against stigma.

I want to flag up another limitation, the implications of which cannot be examined without further research. The 3 categories here were determined by the researchers, which means that we need to pay attention to what terms are included if we are to know what constitutes a "diagnostic label" and what doesn't. Of all the separate labels spontaneously provided (33), only one person came up with "Schizophrenia", whereas 11 used the term "paranoid". These two were grouped together with the following to create the "Psychotic-diagnosis" label category: 

"inherited mental illness, mentally ill, crazy, nervous breakdown, suffering from mental illness, mentally unstable". 

This means that when we say "stigma is associated with labelling" the sort of labelling under discussion is not straightforwardly the sort of labelling conducted by a clinician making a diagnosis. A doctor may very well tell John that he is "paranoid", "Schizophrenic" or "suffering from mental illness", but the word "crazy" is not used anywhere in the DSM and ought not be used by psychiatrists. To better understand the stigmatising effect of diagnostic labels if would be useful to run a different version of the study where "crazy" is put in a different category. 

Another issue is that stigma itself is complex and does not straightforwardly map on to the measure used by the researchers. In other words, even though we can be interested in stigma as measured here, the question of what we mean by stigma is still up for grabs. I raise this because among the non-diagnostic labels that are regarded as protective from stigma are: 

"disturbed, enclosed, isolating from the people around her, loner, troubled, weird, gradually becoming antisocial"

None of which are particularly flattering in themselves, even if they do appear to be creating less fear among those generating them. If I refer to John as "weird" or a "loner", is there not a sense in which I am already stigmatising him?

This fascinating study does indeed suggest that certain sorts of diagnostic term contribute to stigma, but the picture is also more complicated than it first appears, and it is certainly more complicated than Mad In America gives it credit for.

Diagnosis vs. Formulation: A False Opposition?

In British Clinical Psychology, "diagnosis" has itself become a dirty word, regarded as a simile for "labelling" "over-simplifying" and "pigeonholing". It has been spoken about as a malign process of linguistic colonisation, in which an individual's account of their distress is completely effaced. Psychological Formulation, a core competency of the profession is seen as the answer, a process of encapsulating service users' rich descriptions of their own psychological distress. It has been proposed as an alternative not only by the expected team of UK and New Zealand psychologists and psychiatrists but also on philosophical grounds by Belgian psychoanalyst Stijn Vanheule (though it has been noted by David Pilgrim and Timothy Carey that it can be read as an attempt by Clinical Psychology to further affirm its professional status).

A naive observer would be forgiven for feeling puzzled. Surely a diagnostic classification and an explanatory story are not incompatible? Indeed, even Lucy Johnstone, a vociferous opponent of diagnosis and author of a leading text on formulation, has pointed out on Twitter that Formulations can, for the purposes of medical record keeping, be shortened to a version agreed with service user such as "Reaction to severe early trauma, compounded by recent bereavement". She has also said that "Schizophrenia' can often (not always) be replaced by 'dissociative reaction to severe trauma'"; a statement which seems to imply that one construct can be more or less replaced by another.

The real problem with "Diagnosis", in the context of "Diagnostic and Statistical Manual" is that it is not really a diagnosis at all. When you type the word into Google, the first result is the Wikipedia page, which says that "Diagnosis is the identification of the nature and cause of anything". DSM is a text largely devoid of causes and certainly doesn't get into the nitty gritty question of the nature of the phenomena it claims to codify. This is a point that proponents of Formulation have made, and I suspect they would agree that what they are proposing is much closer in spirit than is the DSM to an actual diagnosis.

This suggests that the distinction between "Diagnosis" and "Formulation" is a false one. Evidently the two practices should, in an ideal world, bleed into one another. There is nothing wrong with Diagnosis per se, it is just that the manual we currently use to do it is actually doing something else entirely (namely, bland and often unworkable classification). Formulation does a better job, but, from what I know about it, has no systematic way of incorporating information about the psychology and biology of the person to whom the life events has happened. A third alternative is the PDM, a psychoanalytic, American competitor which manages to integrate psychodynamic information about the person (their chosen style for coping with strong affect, their manner of relating) with an openness to a consideration of environmental factors and life events (their parenting, trauma etc).

Is this a dialectic that can be successfully resolved, or is the debate so bound up in territorial warfare that mental health professionals will always revert to the position dictated by their ideological prejudices?

Diagnosis From the Inside: A Tale of Two Madnesses

The most powerful sort of opinion about psychiatric diagnosis comes not from people like me, who are idly trying to balance its philosophical and political aspects in their own muddled head, but from people who have been given one and experienced what it can do to a person. 

This post is a contrast between the stories of two remarkable people. I have selected them because they are both prominent advocates of diverging views of the role of psychiatric diagnosis and because they both have excellent TED talks in which you can see them in action for yourself. 

Eleanor Longden is a British psychologist who works for a mental health service in Bradford in England:

Longden argues psychiatry's central question should be not "what's wrong with you?" but rather "what's happened to you?". This is a good way of shifting the focus of a breed of psychiatry that is too hung up on the idea of illnesses and has viewed people as a-historical , but I think it misses an important point. To ask only "what's happened to you?" implies that events in a person's life are the only source of information about why they are seeking psychiatric help. The truth is that we all react differently to life events depending on how we have learned to respond and how we are able to respond. I might re-frame Eleanor's question as something like "What resources and styles did you have available to respond to what's happened to you?"

Elyn Saks is a legal academic and trainee psychoanalyst who teaches at the University of Southern California:

Saks' position is rather different than Longden's. Most notably, she talks as though the word and the concept Schizophrenia were an accurate way of characterising her experiences. This marks her out from many of the individuals I have seen talking about this sort of thing. Saks overlooks the controversy that exists over the word Schizophrenia, and instead talks as though what she were experiencing were an illness. In the light of Longden's talk, one is tempted to ask whether Saks has a sense that her life experiences have fed into her "disorder", whether there is anything that she deliberately avoids talking about. This is, of course, entirely her prerogative.

But how to make sense of these diverging sorts of experience? One way is to assume that while Longden has one sort of problem (we might call it "trauma-related-dissociative-voice-hearing"), Saks has another (Schizophrenia). However, this is to assume that Schizophrenia does exist and that what we need is a way of distinguishing it from the range of other psychotic phenomena that so often get called Schizophrenia when they are something else.

Another way of talking about this divergence is to suppose that labeling your experiences "Schizophrenia", or refusing to, are both entirely valuable and compatible strategies for managing a level of distress which society often finds hard to deal with. One model would imply an emphasis on past events and meaning making, the other would suggest an emphasis management by medication. They are not, of course, mutually exclusive.

This raises an interesting dilemma for mental health professionals. Anti-diagnosis advocates often claim to be opposed to the notion of "expertise", but they are actually proposing the replacement of one sort of expertise (medical-pharmacological) with another (psychological-therapeutic). The radical challenge posed by the plurality in this post is to somehow balance the different sorts of emphasis that people want to put on how they understand their experiences. The different "models" of mental health (medical, biopsychosocial, humanistic) are not competing for some ultimate judgement when one of them will be proved "right", they are responses to the multitude of ways in which people wish to manage their lives.

The Real Flaws in Psychiatric Diagnosis 2: The Looping Effects of Human Kinds

The debate about classification in psychiatry can tend to get stuck on the question of whether mental health diagnoses represent actually existing entities or not. One one side of this debate are constructivist anti-nosologists, who claim that they are not. They invoke the argument that such concepts are actually social constructions wielded by whoever happens to have the power. The opposing view is positivist realism, which sees diagnoses as real entities in the world with real biological underpinnings. Between these two extreme positions we can locate an enormous range of views, but the fundamental divide comes down to whether diagnosis does or does not usefully pick out something that really exists. Twenty years ago, philosopher of science Ian Hacking drove right through this dialectic impasse to create a position that took elements of both. His position allows us to pick a course between the possibility that diagnosis are in some way real sorts of things and the obvious truth that they are not a neutral, harmless sort of thing.

Hacking recognised that when scientists classify "natural kinds" like quarks, or trees the classified entities in question don't know or care that they have been classified. Researchers may or may not have "carved nature at the joints" but, if they are picking out a reliable pattern, there is a natural kind that can be of value to scientific inquiry  Kraeplinian psychiatry seeks to divide people up into natural kinds, but Hacking points out that when people are classified it is into "Human Kinds" ("I choose the label 'human kinds' for it's inhumane ring" he said), which do not operate in the same way. We may legitimately be able to pick out patterns in groups of people, but an interesting phenomenon arises when we group them together and label them. People can be (and obviously usually are) aware of the fact that they have been classified, and this changes their behaviour. For this reason, the classification itself almost always has an effect on the individuals that have been classified, thereby changing the classification itself.  Hacking called this phenomenon "The Looping Effect of Human Kinds" (the relevant book chapter by him can be found here and it is fantastically entertaining and beautifully written so I strongly recommend it).

Universal Psychological Processes?

The Looping Effect of Human Kinds idea provides a useful way of thinking about the variation of psychological categories across cultures. Many people flag up the way that mental health diagnoses manifest themselves differently in different cultural contexts. This is taken as evidence that there are no categories out there in the world. Hacking confronts us with a different possibility. There may yet be mental illness constructs "out there" (in fact he explicitly says he thinks there are) but the nature of Human Kinds is such that this knowledge will have different effects in different cultural/historical contexts. This must be what gives rise to at least a portion of cultural variation in mental health problems. In London, being "Schizophrenic" has different connotations than in Ethiopia, and any differences that are caused by being identified as such across the two contexts (or by only being identified as such in one culture and not in the other) will be contingent on the knowledge and cultural associations available to those operating in them. At the same time, it leaves open the possibility that entities like "Depression" or "Psychosis" are underpinned by at least some psychological processes that are common to people across cultures.

Diagnosis Changes Who You Are:

For me the most important issue raised is the social desirability of diagnosis. Hacking actually regards Human Kinds as "unavoidable", but in clinical psychology this is contested, and the examples he raises ("Juvenile Delinquent" and "Multiple Personality Disorder") serve as potent reminders that being told that you are a particular sort of thing has tangible effects on how you behave. This will be familiar stuff to anyone who regards psychiatric diagnosis as merely "labelling" of a disenfranchised group of people by a more powerful group. I have always felt ambivalent about this notion because it seems that partly what people are objecting to here is the insulting metonymic substitution of one entity (a "Schizophrenic") for another (a "Person with Schizophrenia). All medical diagnoses can be regarded as a form of labelling, so their appropriate use may to come down to a question of sensitivity. If diagnoses have any clinical value at all then stigma is an issue that needs to be addressed separately (as it has been in physical conditions).

The power of Hacking's idea lies in the way it captures that "labelling" isn't just about sensitivity or politeness, but concerns the way in which people think of themselves. If you are told you have Schizophrenia, you come to view yourself in a particular way in terms of your genetic constitution, your future prospects for life without medication, and your capacity to remain stable. This information obviously changes the way you behave and relate to others. It changes you, and in some sense it changes what is meant by "Schizophrenia".

Many (perhaps most) psychiatrists and psychologists accept that diagnoses reflected a useful pragmatic way of classifying people according to the problems they have experienced and the sorts of help that are likely to be useful. However, the Looping Effect suggests that their are downsides to this, and that these may outweigh the benefits. If the focusing illusion suggests that diagnosis limits the possibilities that clinicians will offer to service users, the Looping Effect suggests that diagnosis in some way limits the range of behaviours people have open to them. The ramifications of this are that psychologists don't need to win the argument about whether diagnoses exist before they argue that they shouldn't be used. The question of whether diagnoses are valid constructs is a complex and multifaceted debate that takes place on shifting philosophical sands. The question of whether they do more harm than good might be rather simpler.

How I Ended up on the Front Line of US Gun Control

As a left-leaning European, I was in favour of controlling access to guns even before Adam Lanza walked into a school in Connecticut with one last December and used it to kill 26 people. It seems so utterly clear to me that restricting the sorts of guns that people are allowed to own cannot not be considered anything like a serious violation of anybody's human rights. I was relieved, therefore, that one of the outcomes of that dreadful morning was that the issue seemed to be getting seriously discussed in the USA and for most of the rest of 2012, seemed to be gaining the sort of momentum required for real change.

Unfortunately, a strange sub-genre of gun control arguments emerged at exactly the same time. This is best epitomized in the audaciously titled Blue Review article "I Am Adam Lanza's Mother" written by journalist Liza Long about her experience of her son, who is emotionally volatile and often extremely behaviourally disruptive. Long's capacity to delicately articulate sensitive truths about her difficult relationship with her child (even if she didn't explore likely motivations for his behaviour) served to hide the fact that she was fueling a pernicious way of thinking about what was going wrong with guns in this country. Instead of suggesting that the government could restrict the sorts of guns people are able to buy (as happened in the UK after the Dunblane School shooting in 1996), Long was inadvertently adding weight to the view that they should restrict the sorts of people who are able to buy guns.*

Two and a half months ago a version of this (the SAFE act) was passed into law across New York State, and since then it has been coming into effect as its provisions are disseminated to mental health clinicians. Yesterday morning in my weekly clinical meeting, the assembled trainee psychologists were told that any clients who expressed a serious intention of killing themselves or others (regardless of how they intended to do it) will henceforth have to be reported to the Department of Criminal Justice Services. This information will create a list, which can be cross referenced with existing lists of registered firearms owners. Anyone who appears on both may be subjected to a police raid and have their gun confiscated.

There are a number of criticisms of this idea from the perspective of a psychologist. One obvious point, which has already been made, is that it disrupts the environment of trust and safety that allows successful therapy to occur (try telling someone who has been experiencing acute paranoid feelings that you may have to report them to the government). However, of more relevance to me (and of course to the theme of this blog) is that it essentially creates a new bureaucratic category for people with mental health problems to fall into. The intended ramifications of this category are of little concern to me, I don't feel a strong emotional pull to affirm anyone's right to keep guns. What I do object to are the social implications of the new category, which are serious and which only serve to perpetuate an already existing myth about mental health and gun control, namely (and to be glib) "Guns don't kill people, crazy people do".

I am not arguing that categories, when used sensitively, cannot be useful indicators to risk (in fact I have previously argued the reverse!). As a clinician I already have a duty to observe for signs that a person is at risk of suicide or homicide. This includes such information as can be gleaned from any diagnoses that have been made, and is entirely appropriate. This law goes beyond that, demanding the disclosure of that information to a third party, a law enforcement agency no less, as though certain forms of mental health problem were in themselves vaguely criminal. It does so publicly, with implications for how the general population thinks about the risks presented by those who seek treatment. It's a maneuvre that subtly shifts the blame for high school shootings away from the fact that it's easy for anyone in this country to obtain a gun, and onto a group of people who, by dint of a messy mix of medical, legal and bureaucratic classifications come to be viewed as inherently unstable or unpredictable. This is incredibly pernicious, it is scapegoating, and it is a dreadfully inefficient way to avert future deaths




*The specific implications of Long's piece for how people think about mental health are discussed in this excellent blog post from The Girl Who Was Thursday.

The Real Flaws in Psychiatric Diagnosis 1: The Focusing Illusion

In previous posts I have been grappling with my feeling that some of the arguments used against psychiatric diagnosis are superficial or wrong. There are numerous harms associated with psychiatry, (not least of which is the use of toxic, sometimes useless medications-administered as though a psychiatric diagnosis were necessarily the same sort of thing as a disease or infection) and diagnosis sometimes takes the heat as an obvious symbolic stand in for these. In the main, it seems perfectly possible to group kinds of problem together by common aetiologies and processes they share, and then use this information to help treat them. This is all diagnosis ought to be.

However, just because it is possible to diagnose mental health problems successfully, it doesn't follow that it is the most suitable approach to grasping them. In discussing this issue with people on Twitter and other forums, I have felt that the viability of diagnosis (though not the common diagnostic system the DSM) remains intact, but its desirability, as a thing one person does to another, is a lot more questionable. The most common way of complaining about diagnosis is to describe it as a sort of "labeling" or "pigeonholing" of people. This gets dismissed by some (e.g. Paul Meehl) as basically trivial, after all, other sorts of patients get labelled too. However, there is more to labeling than first meets the eye. How we apprehend one another strongly affects how we interact, and how we interact affects how we behave and feel, both of which are obviously crucial for mental health. In this and following posts I will explore ideas from psychology and philosophy that inform the effect of labeling on human interactions, these ideas raise (but don't necessarily answer) significant questions for diagnosis:

The Focusing Illusion:

The focusing/anchoring illusion is the tendency for people to inadvertently be guided by information that is actually a good deal less relevant than they think to the decision at hand. Daniel Kahneman writes brilliantly about it in his book Thinking, Fast and Slow, and here he is in person explaining how it works far better than I can:

Kahneman is concerned here with how the focusing illusion disrupts our thinking & decision making about our own lives, but there are two reasons I think it is relevant to the question of diagnosis. The first is that it is a judgement bias that could thwart the process of successfully making a diagnosis (i.e. focusing on a less relevant piece of information and leaping to an incorrect conclusion). This is a problem that is already recognised and researched in psychiatric diagnostics (i.e. this 2009 study by Woodward et al), but, it is of less interest to me here because it is a flaw in diagnostic reasoning that could interfere with even a perfectly valid physical diagnosis. If it is accepted that diagnosis in physical medicine is useful, then any problem that is equally relevant to that field and the psychiatric field is not really a problem for psychiatry alone.

The specific danger of the focusing illusion in mental health is that, in the absence of more knowledge about a person's experience the diagnosis itself becomes the over-valued piece of information, leading to a situation in which alternative explanations for a person’s suffering are no longer considered. Once someone has been flagged as "Personality Disordered" (say) it becomes extremely easy to interpret everything they do in the light of this information (Rosenhan's classic study of psychiatric wards is of course the classic example of this). More importantly still, it becomes much harder to see what they experience in terms other than those set out by the notion of the disorder. Any readers of this blog who have been diagnosed with serious disorders like Schizophrenia or Bipolar Disorder may have their own stories to tell about how the strong medical connotations of these words can seem to prevent them from being given access to other more humanistic therapeutic input. This paper by Joanna Moncrieff (which was brought to my attention by Dr David Murphy, whose blog on psychotherapy is here) is a good illustration of the ways diagnosis can obscure rather than illuminate the complexities of people's problems.

Perhaps it's possible for psychiatric diagnosis to be helpful in spite of the focusing illusion. By necessity this is the case in physical medicine, where nobody disputes that it is generally worth knowing you have Cancer in spite of the sometimes devastating implications of that knowledge. However, psychological disorder constructs are infinitely more slippery and controversial than Cancer, and in the ongoing competition with other tricky self-relevant concepts, they are receiving a huge steroid boost by their inclusion in the DSM.    They may be responsible for obscuring other aspects of service-user's very personhood.