The year 2011 marks the one hundredth anniversary of the introduction of the diagnosis of schizophrenia by the Swiss psychiatrist Eugen Bleuler (Bleuler, 1911). In this article we propose that the best way to celebrate this event is to consign the diagnosis to history. In doing so, we declare our support for the position already set out by the Campaign for the Abolition of the Schizophrenia Label, that there can no longer be any justification for the continued use of the diagnosis because the way it is used is unscientific and harmful (CASL, 2010).
We endorse the Campaign by presenting additional information in support of their position. There are three arguments against the way the diagnosis of schizophrenia is used; it has no scientific basis, it is harmful, it leads to stigma. It is worth noting that the latest thinking from the American Psychiatric Association suggests that there may be no place for subtypes of schizophrenia in DSM-V, although the concept is still retained (DSM-V, 2010). The arguments we develop here are specifically directed at the diagnosis of schizophrenia. We are not proposing the complete abandonment of diagnosis in psychiatry, which needs to be recognized for what it is. Diagnoses are simply working concepts for clinicians justified by their clinical utility (Kendell & Jablensky, 2003). The problem is that the label ‘schizophrenia’ has lost any such value, because it has become reified into something that it is not.
The diagnosis of schizophrenia has no scientific basis
There have been many excellent and thoughtful critiques of the concept of schizophrenia from a scientific perspective (Boyle, 2002; Johnstone, 2000; Bentall, 2003). Over the last thirty years or so, academic psychiatrists have worked hard to improve the reliability of psychiatric diagnosis. This is partly in response to critics of psychiatry who pointed out that the diagnosis of schizophrenia was meaningless because of poor levels of agreement between psychiatrists about key symptoms of schizophrenia. They were also unable to discriminate between sane and insane people (Rosenhan, 1973). The introduction of DSM-III and DSM-IV imposed diagnostic agreement on the profession through the use of check-lists of diagnostic criteria, but this has served to highlight an even more fundamental problems with the concept of schizophrenia, its validity.
The philosopher Carl Hempel (1961) argued that the validity of a concept like schizophrenia depended upon the extent to which it represents a naturally occurring category. If it does, then there should be an identifiable biological property of those who have the diagnosis that makes them unique and distinct from those who don’t. In other words the category should ‘carve nature at the joint’. The failure of basic science research to reveal a specific biological abnormality that distinguishes those who are categorised as having schizophrenia from those who don’t indicates that categorical diagnostic systems such as DSM-IV and ICD-10 have outlived their usefulness (van Os, 2003; van Os, 2003a; Anckarsäter, 2010). Even researchers in genetics (Owen et al, 2007) are now arguing that the categorical diagnosis of schizophrenia is severely handicapping their studies.
A central feature of diagnosis in medicine is that it should predict the future course of the disease if left untreated (its natural history), as well as the response to specific forms of treatment. Kraepelin (1913) reported that only 13% of his patients suffering from dementia praecox (schizophrenia) recovered, but the evidence from more recent long-term outcome studies of people with the diagnosis shows that in broad terms 50% or more of people improve significantly (Bleuler, 1978; Ciompi, 1980), and many recover fully. Recent work in Singapore and Madras confirms this. Kua et al (2003) found that two thirds of patients in Singapore had good or fair outcome at 20 years. In Madras, Thara et al (2004) found that only 5 out of 61 subjects followed up over 20 years had been continuously ill. More than three quarters were in employment. There is simply no evidence to support the view that the diagnosis of schizophrenia predicts poor outcome.
Moreover, there is no evidence that there are any specific biological treatments for schizophrenia. Although antipsychotic drugs are sometimes claimed to reverse a biochemical imbalance, no such imbalance has been demonstrated. The drugs are more likely to work through their general suppressant effects, which they exert in anyone who takes them and not just in people diagnosed with schizophrenia (Moncrieff, 2008). The condition is not only unscientific but a barrier to recovery.
The diagnosis of schizophrenia is harmful
Some people appear to be happy to receive a diagnosis of schizophrenia. It is one way in which they can make sense of their experiences (Jameson, 1996). However many find it unhelpful (Rogers, et al, 1992). A large-scale study in nearly thirty countries involving face-to-face interviews with over seven hundred people diagnosed with schizophrenia found that 54% reported that the diagnosis had been a disadvantage (Thornicroft et al, 2007). Similar findings emerge in personal stories of those diagnosed with schizophrenia (Read & Reynolds,1996). In our view there are four main reasons why the diagnosis of schizophrenia can be harmful; it is a barrier to recovery, it forecloses the importance of meaning, it invokes powerlessness, it obscures the importance of contexts.
A barrier to recovery
The word ‘recovery’ is strongly tied to the medical model; we speak of people recovering from cancer or open heart surgery. But for many survivors and service users the word has a different meaning, one that implies speaking out, an act of reclamation, or, as Coleman (1999) says, ‘having a voice’. Without a language to speak, a voice to speak with, and opportunities to be heard by others, there can be no story and no recovery. Through social action the survivor movement has created safe spaces in which individuals can start the process of telling their own stories. The point here is that the meaning of recovery for service users and survivors in Britain (Coleman, 1999; Faulkner & Layzell, 2000; May, 2000) and in the USA (Chamberlin, 1978; Deegan, 1996) is very closely tied to the struggle of survivors to have the right to tell their own stories in their own way.
The real problem with the diagnosis of schizophrenia as far as recovery is concerned is that it imposes a narrative of despair on those so identified. The late Robert Barrett, an Australian psychiatrist and anthropologist, examined the cultural preoccupations that shaped the origins of the concept of schizophrenia in the nineteenth century (Barrett, 1996). One was the contrast between the integration and disintegration of the individual. Another was a concern with the Enlightenment ideal of progress and its opposite, degeneration. Both had a great influence on the emerging discourse about schizophrenia, and this persists today. It is seen in the belief that schizophrenia is a condition that inevitably has a poor prognosis, and from which the chances of recovery (restitutio ad integrum) are slim. It is to be found in words like ‘deterioration’, ‘deficits’ and ‘defect state’, and instantiated in services whose purpose is to ensure the rapid and early drug treatment of young people in their first episode of psychosis to prevent ‘deterioration’. These are narratives of hopelessness and despair.
It forecloses meaning
Diagnosis obliterates meaning by transforming significant experiences into a narrow disease framework. Louise Pembroke (1996) found that when her psychiatrist diagnosed her as ‘schizophrenic’, he not only disregarded her own spiritual understanding of her experiences, but problematised this by regarding it as a symptom of her illness. O’Hagan (1996) describes how her psychiatrist’s preoccupation with her diagnosis and medical treatment meant that he turned away from her suffering and failed to engage with it. The requirement to render patients’ experiences in terms of a diagnostic category means that complex and important experiences are stripped of their meaning by identifying them as symptoms.
Brunner (1996) understood her psychosis in terms of her mother’s experiences of madness after moving from Jamaica to England in the 1950s and through their shared experiences as Black women in a predominantly white culture. Likewise, Dewan (1996) understood her psychosis in terms of her mixed cultural heritage (Indian and Irish Catholic). Racism features prominently in both women’s understandings of their psychoses. They contrast their contextualised understandings with reductive psychiatric diagnosis in terms of disordered brain function that requires medication. This is particularly significant in the light of evidence that African and African-Caribbean people are much more likely to be diagnosed as suffering from schizophrenia (e.g., Cochrane, 1977; Carpenter & Brockington, 1980; Dean et al, 1981; Harrison et al, 1988; van Os et al, 1996).
It invokes powerlessness
Peter Campbell (1996) saw the power of psychiatry in terms of the influence and control it had in many areas of his life. Although his psychiatric diagnosis was manic depressive psychosis, his experiences reflect more generally those of people diagnosed with schizophrenia. He makes two points about the power of psychiatry. First, the judgement that a person ‘lacks insight’ is profoundly disempowering, especially when ‘insight’ means agreeing that you are suffering from schizophrenia. To say that someone lacks insight is not to state a fact but to make a judgement, one that reduced him to a ‘…category of persons whose experience is devalued, status diminished and rational evidence dismissed…’ (ibid: 57). He also points out how diagnosis and the biomedical model it implies is now the dominant framework through which society interprets psychosis. This has two implications; it means that it is only possible to talk about recovery in terms of symptoms control, which many service users find very unhelpful, and it contributes to the predominantly negative view, in society, of people who experience psychosis. We will return to this shortly.
It obscures the importance of contexts
We have already seen that the use of the diagnosis of schizophrenia pays scant regard to cultural contexts and personal narratives rooted in this. However, the contexts that we are particularly concerned with here are those that involve experiences of trauma and abuse. This is important because there is a substantial body of evidence linking the experience of hearing voices and other psychotic experiences to trauma and abuse in adults and children (Romme & Escher, 1989, 1993; Honig et al, 1998; Escher et al, 2002; Greenfield et al, 1994; Goodman et al 1997; Mueser 1998; Read et al 2003; Morrisson, 2003; Bebbington et al, 2004). This resonates powerfully with the experiences of the Hearing Voices Network. Speaking at a conference in Manchester in 2006, the National Chair of the organization described how it had listened to the experiences of people who hear voices for fifteen years, many of whom had been diagnosed schizophrenic, but whose life experiences included sexual, physical and racial abuse, poverty, neglect and stigma (Dillon, 2006). This is why it is so important to attempt to understand psychotic experiences in the context of the person’s life story. Not to do so can be harmful because it obscures and mystifies the origins of problematic experiences and behaviour that has the potential to be understood (Romme & Escher, 2000).
The diagnosis of Schizophrenia leads to stigma
It is widely believed that improving public understanding of schizophrenia in biomedical terms will improve public attitudes towards people with the diagnosis, and thus reduce stigma. This because it is assumed that if the causes of psychosis are attributed to biological factors over which the person has no control, then the individual cannot be blamed or held responsible. In fact recent research evidence refutes this view. Angermeyer & Matschinger (2005) subjected two representative population surveys of public attitudes to psychiatric patients (using vignettes of schizophrenia and depression), conducted in the Länder of the former German Federal Republic in 1990 and 2001 to a trend analysis. Over the period of the study an increase in public acceptance of biomedical explanations of psychosis was associated with a public desire for increased distance from people with schizophrenia. These trends did not hold for major depressive disorder.
Read et al (2006) have comprehensively reviewed the literature on stigma and schizophrenia to assess whether the ‘schizophrenia is an illness like any other’ approach helps reduce prejudice towards those with the diagnosis. They found an increase in biological causal beliefs across Western countries in recent years, suggesting that this approach is gaining hold. However, biological attributions for psychosis were overwhelmingly associated with negative public attitudes in 18 of 19 studies, whereas psychosocial attributions were associated with positive attitudes in 11 of 12 studies. Biological attributions are thus strongly linked to negative public attitudes, or stigma. This appears particularly to be the case for the diagnosis of schizophrenia.
Sayce (2000) has described in detail the implications of stigma, particularly the loss of citizenship associated with being a psychiatric patient. A label of ‘chronic schizophrenia’ interferes with a person’s identity and biography (Riemann, 1987). In addition, the presence of "insight" in schizophrenia lowers self-esteem and leads to despair and hopelessness (Bassman, 2000), and also predicts higher levels of depression and risk of suicide attempts four years later (Crumlish et al, 2005). Hasson-Ohanon et al (2006) found that the presence of ‘insight’ was negatively correlated with emotional well-being, economic satisfaction and vocational status. Accepting a diagnosis of schizophrenia means that the person must also accept the negative public attitudes and stigma associated the diagnosis. As we have seen, the diagnosis brings expectations of a gloomy outlook with lifelong dependency on psychiatric treatment and little chance of complete recovery. Thus rejecting the diagnosis (or ‘lack of insight’) may be understood as a positive way of coping with the implications of the diagnosis for personal identity.
We have set out three major objections to the continued use of the diagnosis of schizophrenia. It has no scientific basis, it is harmful, and it makes stigma worse. In addition to this, it is a barrier to recovery, and it is an obstruction to the possibility of finding meaning in psychosis. It invokes powerlessness, and disregards personal contexts of trauma and abuse.
Diagnosis in psychiatry involves much more than simply ‘carving nature at the joint’, which lays the emphasis on diagnosis as a scientific project. Diagnosis is not only about identifying disease but also about understanding the reasons for action. The value-laden nature of diagnosis is a sign of its meaningful nature. Assuming schizophrenia is an entity of some kind directs attention away from important clinical features of diagnosis, especially those narrative aspects that are important in teasing out the different meanings of suffering, from the patient’s perspective, the family’s and the clinician’s. We are certainly not opposed to this, but there can be no justification for the continued use of a diagnosis like ‘schizophrenia’ that serves to obscure meaning, is unscientific and harmful.
We fully support the Campaign for the Abolition of the Schizophrenia Label, and will work with them and others committed to getting rid of it. The onus is on clinicians and academics in the field of mental health to work much more closely with service users and carers to find more acceptable ways of identifying and naming psychosis.
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