Diagnostic disarray
by
- Catherine Jackson
- A diagnosis is fundamental to medical
treatment: doctors need to be able to agree on what is wrong with us in
order to prescribe treatment and cure us.
That, at least, is how physical health care works. But what if the experts frequently fail to come up with the same diagnosis for the same sets of symptoms in the same person? What if there are two completely different understandings of the disease, its risk factors and causes and how it should be treated? What if there is little objective scientific and physical evidence underpinning the diagnosis? What if the validity of the diagnostic system itself is questionable, precisely because there is weak scientific evidence to back it up?
Disagreement over the validity of medical diagnoses of mental illnesses and the efficacy of psychiatric medications runs through mental health practice like the San Andreas Fault. The publication by the American Psychiatric Association of a draft fifth revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM, first published in 1952) has further widened the crack between the two camps.
On one side is a rapidly growing international group of critics, led by UK and US psychological and counselling organisations. Some 12,800 people have so far signed an international online petition against the draft DSM-5 that was launched by the Society for Humanistic Psychology, a division of the American Psychological Association. The petition itself was inspired by the British Psychological Society’s (BPS) polite but scathing critique of the draft.
On the other side is an embattled American Psychiatric Association and its DSM-5 Task Force, whose revision has been criticised by many psychiatrists outside the US, and even by the chair of the task force that produced DSM-IV.
The main criticisms of the draft DSM-5 are that it applies psychiatric diagnoses to an even greater number of what might be considered normal ranges of human emotions and behaviours and that it ignores almost completely any factors that might contribute to mental illness other than the biological and neurological. Critics say it extends still further the medicalisation of human distress and difference, without the scientific and biological evidence to support it.
The BPS says that, without this evidence of physical signs or biological causation, DSM-5’s diagnostic categories ‘rely on subjective judgments’ and are influenced by ‘current normative social expectations’ of what is and is not perceived as ‘abnormal’.
The BPS also highlights what it sees as the individualisation of mental disorder. By locating the problem in the individual, the BPS argues, medical diagnostic systems such as the DSM overlook potential social and environmental causal factors. If a mental illness has (as research clearly shows) a social cause, such as poverty, warfare trauma, sexual abuse or social inequality, the cure lies not in antidepressants or even cognitive behavioural therapy; it lies in reducing disparities in income, improving welfare benefits, avoiding wars and improving childcare and child protection through community and public health interventions. This is a very different world to that of DSM-5.
Peter Kinderman, Professor of Clinical Psychology at the University of Liverpool and spokesman for the BPS on the DSM debate, says DSM-5 is making a bad system worse. ‘It’s trying to pathologise a vast swathe of human nature and social problems as symptoms of mental illness. It makes people look for biomedical solutions to social problems, and it allows people to prescribe medical solutions to social problems. We should be identifying people’s problems, formulating an intelligent hypothesis about why they have them, and then doing something about them. That is different from diagnosis.’
The debate is not simply medical versus non-medical: ‘I am not totally against drug treatment,’ Kinderman says. ‘Where medication is helpful, it should be identified as such. But attaching the label “major depressive disorder” to someone doesn’t tell us if the drug is going to help the person or not, and the vast majority of people with a mental health problem would benefit more from therapy than from drugs. The label carries stigma; it means they haven’t got problems that are part of normal life.’
Blurring the distinctions
Criticism of DSM-5 is also coming from the psychiatric profession. Nick Craddock, Professor at the Department of Psychological Medicine and Neurology at Cardiff University School of Medicine, is also concerned that DSM-5 has travelled too far along the road to medicalisation. ‘Psychiatry is based on the idea that there are both normal, and abnormal experiences and there is value in recognising the abnormal, because then you can help. But the corollary is that it is also important to recognise when an experience is part of normal behaviour, and not to broaden what is regarded as illness and not to intervene. What psychiatrists generally don’t think is helpful is labelling more normal experiences because then you are blurring the distinctions.’
He cites the DSM-5 revision on bereavement as an example. DSM-IV specified that there should be a four-month ‘bereavement exclusion’ following a death: if a person continues to experience symptoms of low mood, loss of appetite and loss of interest in life (basically, depression) beyond four months, then they should be referred for psychiatric treatment. DSM-5 removes that exclusion period, which could result in a very normal period of mourning and loss being diagnosed as clinical depression. ‘That is a change that moves us towards medicalisation and that is something most psychiatrists don’t agree with,’ Craddock believes.
He argues that there are some positive developments in the DSM-5 revisions, such as the inclusion of ‘dimensions’ of symptoms, which means people can be diagnosed with greater sensitivity to their specific symptoms. But the main weakness of DSM-5 is that it has come too soon, he argues: there has, quite simply, been too little that is new emerging from research to warrant this new edition. He says many psychiatrists in the UK and across Europe ‘would have some skepticism’ about the benefits of the DSM-5 revisions.
There are financial dimensions to the DSM debate. DSM is the American diagnostic manual; most of the rest of the world uses the World Health Organisation’s International Classification of Diseases (ICD) system (currently at ICD-10). ICD-10 is free, unlike the DSM manuals, which are sold by the APA. The DSM is also inextricably bound up with the US medical insurance system: without a DSM diagnosis, US health insurers won’t pay for treatments.
Craddock is sympathetic to the dilemmas facing the DSM-5 Task Force. ‘In the US, if a professional wants to help someone, they need to label the problem as something that justifies giving the help. At the moment in the UK we don’t have to do that. You can get help with a milder mental health problem that needs social or psychological intervention without a psychiatric diagnosis.’ This may partly explain why the diagnostic thresholds have been lowered in DSM-5, and why the list of disorders has been extended. However he warns that, with the introduction into the UK national health service of payment by results (PbR), ‘we in the NHS are going down that path’.
The extent of the drug industry’s influence over the content of DSM is a highly contentious issue. The New Scientist recently reported that more than half the individuals in the DSM-5 Task Force have some financial link with the pharmaceutical industry. These connections have even greater resonance in the context of revelations in recent years of the misrepresentation by drug companies of the outcomes of psychotropic drug trials.
More than biology
David Elkins is Professor Emeritus of Psychology at Pepperdine University and, as President of the Society for Humanistic Psychology, chaired the committee that wrote the open letter to the DSM-5 Task Force to which the 12,800 signatories have put their names. He says the research evidence is crystal clear that mental and emotional distress cannot be explained in terms of biology alone. ‘After many years of neurobiological research, there are still no biological markers for most mental health problems. The medical model has worked well for physicians when treating biological disease. It doesn’t work well when it is superimposed on psychological difficulties. We already have a problem in the US with misdiagnosis and the overzealous prescribing of psychiatric drugs. This is not to question the motive or intentions of those on the DSM-5 Task Force, but it is deeply troubling to think that they may indeed invent new disorders and lower thresholds on existing disorders in such a way that more and more individuals will be misdiagnosed and treated with drugs.’
He is not anti-psychiatry or anti-drugs, he says: ‘Medication is sometimes a helpful part of therapy but it has potentially dangerous side effects and should not be used except when truly necessary. Unfortunately the US public [direct advertising of pharmaceuticals to the public is allowed in the US] is being trained by advertisements from pharmaceutical companies to think that emotional problems can be solved with a pill. This is an appealing perspective and, unfortunately, seems to be increasingly supported by psychiatrists.’
He also questions the hegemony of psychiatry over the other mental health professions, which he believes may explain some of the ‘backlash’ against DSM-5. ‘Many psychiatrists receive a great deal of money from pharmaceutical companies and this alliance may cause some, intentionally or unintentionally, to become more “biological” in outlook and emphasis. I think neither profession should have authority or monopoly over the other.’
Validating
Elkins raises another important factor in the complex debate: the value the general public places on a psychiatric diagnosis. It can be the one way people can access help, or even give themselves permission to seek it.
Andrew Reeves, counsellor and supervisor and editor of Counselling and Psychotherapy Research, says that counsellors and psychotherapists cannot ignore the influence and impact on a client of a medical diagnosis, even if they don’t use diagnoses or recognise them as in any way valid. ‘I see a lot of people who come to the service where I work who are wanting a therapist a couple of weeks after a major bereavement and are quite disappointed when I say what they are going through is really quite normal, that it’s not pathological. A diagnosis can give someone a sense of validity for what they are feeling, particularly around emotional distress.’
But, he says, he questions the whole psychiatric diagnostic process: ‘I would subscribe to the main criticisms around the medicalisation of human experience. Diagnoses can be reductionist: they can boil down someone’s complex experience to one label. So a diagnosis can open doors in one way but close doors in another.’
Reeves shares Elkins’ critcism that DSM-5 is the product of psychiatrists, with no robust scientific evidence base: ‘DSM-5 is a collection of opinions of what is essentially a closed group of people. There are concerns about the validity and reliability of the diagnoses in real world situations.’
The diagnoses are also not value-free, he argues. He points to Gillian Proctor’s work on borderline personality disorder diagnosis and its links with childhood sexual abuse. ‘She argues that borderline personality disorder is often applied to women who are very vocal and challenging and seen as difficult, because that doesn’t fit with how we expect women to behave. And you can move that out to whole range of diagnoses in DSM-5, including sexuality. We end up pathologising large groups of people who behave in ways that don’t conform to the norm or to social expectations.’
As someone who has had six different psychiatric diagnoses in his lifetime, David Crepaz-Keay, Head of Empowerment and Social Inclusion at the Mental Health Foundation, could be forgiven for his ‘jaundiced view’ of the usefulness of diagnostic systems. But, based on the Foundation’s current research with people with a range of diagnoses for very severe mental health problems, including psychosis, schizophrenia, severe depression and bipolar disorder, he argues that a diagnosis can be helpful.
‘In our work in Wales we have found a distinct difference in people’s relationships with their diagnoses. People with bipolar disorder find it helpful to have a diagnosis because it also provides them with a sensible framework with which to self-manage their condition. But the others, and particularly those with schizophrenia, find it unhelpful. They say it narrows the treatment options to things that don’t work and actively excludes them from things they do find helpful.’
He conjectures that one reason is the greater consensus in the psychiatric profession about the symptoms of bipolar disorder, which is absent in the case of schizophrenia. ‘A schizophrenia diagnosis is much more clinician-dependent. So the differences seem to be accuracy and reliability of diagnosis and efficacy of treatment, particularly from the perspective of the person receiving the treatment.’
From this he concludes: ‘If you have to have a diagnosis, and treatment is helpful, then yes, it is useful. If, however, it is inconsistently applied and doesn’t yield any benefits to the patient and if, having tried it, it hasn’t helped the patient, you should give up and do something more useful.’
Anne Beales, Director of Service User Involvement at the mental health charity Together, says that a clinical diagnosis attracts and perpetuates stigma, rather than offering a rational explanation for what might appear to others as irrational and potentially frightening behaviours. ‘Research in New Zealand, in their Like Minds, Like Mine campaign, found that if you use a diagnosis as part of an anti-stigma campaign, it actually increases stigma. Diagnoses become a means for society to set us apart and then set us aside and then set us under. There is little proof that the medical model helps us long-term, it simply contains us.’
She would like to see people’s experience of mental illness unpacked into everyday language. She cites a booklet published by Together called Talking About Mental Health that compares different ways of describing symptoms of various diagnoses, including the DSM definitions and those used by other, non-western cultures. Its aim was to encourage people with mental health problems to find their own ways of articulating their experiences in a common framework of understanding. So, for example, a bipolar ‘high’ might be described in lay terms as, ‘When I am high I have boundless energy, experience a flood of creative ideas and have no social inhibitions’. In West Africa people use the phrase ‘Arctic hysteria’ to describe an episode of high excitement when someone may take off their clothes, run outside, break things, shout and put their safety at risk, while Greenland Kalaallit use the word ‘zar’ to describe behaviours including laughing, shouting, singing, weeping and withdrawal, which are linked with spirit possession.
‘We shouldn’t get wound up with the diagnosis, we need to look at the person,’ Beales says.
Another way
Sami Timimi is a consultant child psychiatrist with Lincolnshire Partnership NHS Trust. He has recently launched a campaign to abolish all formal psychiatric diagnoses. ‘It isn’t just that they lack validity and reliability. They’re a distraction,’ he says. ‘Today, when a diagnosis is made, the psychiatrist thinks they have done their job. But none of the diagnostic categories provide an explanation.’
He cites as an example the diagnosis of ADHD, which is increasingly applied to children whose behaviour is hard to manage. ‘You end up with a circular argument. What is causing this child to be overactive and have difficulty concentrating? Answer: ADHD. How do you know it’s ADHD? Answer: Because the child is overactive and has difficulty concentrating. Then you get a narrative attached to that; it becomes a neurological problem and there is no consistent evidence for that. You invite everybody to stop looking beyond the label. You shut down an opportunity to understand the nature of the problem.’
Indeed, he calls psychiatric diagnoses ‘iatrogenic abuse’ because of the absence of any scientific basis for the highly toxic treatments that a diagnosis permits doctors to prescribe to young children. ‘In psychiatry we simply have a system based on subjective judgments’. The result, he says, is a dangerous elasticity. ‘When you have a diagnostic category that can be expanded year after year, you should worry. And that is what is happening with quite a few of our diagnostic categories. So we are increasing antidepressant prescribing to children, despite guidelines telling us to limit them, and that is because it is a very subjective diagnosis and we are talking about areas in life where there is always going to be a market. There will always be kids with behaviour problems and kids who are unhappy and parents and teachers who want something to help them manage the situation.’
And, he points out, we like the certainty of a medical diagnosis. ‘None of us like living in a world of uncertainties so it’s easy to see why doctors, teachers parents, children themselves get hooked on that. But if you look at the research, what makes a difference isn’t matching treatment to diagnostic categories. That has negligible effects. The main things are to do with external factors – socio-economic status, social inequalities, parental mental health, parental levels of education. The next biggest is what patients bring with them – their attitudes, feelings about the treatment and their motivation to engage with it. And the third, the biggest one, is the therapeutic alliance.
‘The explanation and the proposed course of treatment has to make sense to people. If we concentrate on that and develop a service that can work flexibly and doesn’t fall into diagnostic thinking, that is what will make the biggest difference,’ Timimi says.
Timimi and his community CAMHS team in Lincolnshire are putting this to the test. They have launched what they call OOCAMHS – outcome-oriented child and adolescent mental health services. They are trying to work without diagnoses, looking at each individual child or young person in the round: their life, their family, their school and any other factors that might be affecting them. They are using the full range of psychosocial treatments available to them, and monitoring outcomes session by session. ‘If they aren’t improving, we try something else, or switch therapist,’ Timimi says.
They have compared their outcomes with those of a neighbouring CAMHS community team. ‘According to patient ratings – not our ratings – we have the lowest DNA [did not attend] ratings in the county and the lowest number of children and young people who have been in the service for more than two years and by far the lowest rate of referrals to inpatient services. We have devised a model that doesn’t invite people to think of themselves as long-term mental health patients.’
He launched his campaign, No More Psychiatric Labels, because, he says: ‘We’ll never make progress using formal psychiatric diagnostic systems. People say this is crazy stuff, but the idea that we can come up with technical solutions to people’s problems is crazy. The problems we deal with are relational, not technical. That is where the solution lies.’
Nick Craddock is hopeful that emerging research into the brain will lead to a better alternative to DSM. ‘The problem with DSM is it’s actually just a lot of descriptions of symptoms and we don’t yet have a full enough understanding of the biology, sociology and psychology to understand what is going on in terms of the risk factors for illnesses and the factors involved in developing an illness. There is a lot of information coming out now that is helping to link together biological understanding of the brain with psychological processes. The way we make diagnoses needs to relate to that knowledge. We should not be falling back on lists of symptoms.’
Peter Kinderman and colleagues at the BPS are working on an alternative system for describing and treating symptoms of mental distress. They are starting with a descriptive list of symptoms of 250 DSM diagnoses and using a validated scale to identify the severity of their effects to provide a route to a range of treatments. He points to new research that shows very clearly a link between childhood sexual abuse and one of the chief symptoms of psychosis in adulthood, hearing voices.1 ‘What does a diagnosis of schizophrenia mean in that context?’ he asks. ‘It simply sends out an inappropriate message. Hearing voices is hearing voices: you simply need to recognise the truth of the situation. People hear voices for lots of reasons – if they go without food and drink, bereavement, one in ten of us hears voices quite regularly without it being a problem – that is hugely different from diagnosing schizophrenia and subjecting the person to psychiatric treatment.’
Jumping off the bandwagon
Kinderman believes that even psychiatry has recognised that a strictly biomedical approach doesn’t work. ‘They talk about the biochemistry of the brain. The same chemicals and processes are involved in falling in love, being sad, hearing voices, being anxious, failing to pay attention in school and turning a piece of wood on a lathe. They are all part of being human. The understanding of the brain should lead us to understand what it is to be human.’
Pete Sanders, retired counsellor and trainer, a trustee of Soteria Network and founder of PCCS Books, is more blunt: ‘There is an ideological battle going on. We are seeing an alarming medicalisation of everyday life. You can’t be sad any more; you have to be depressed. You can’t be shy any more; you have to have social anxiety disorder. I am alarmed by the lack of reliability and validity in the way symptoms are clustered to create diagnostic categories out of thin air. But my real distress, my great disappointment and dismay is that psychiatry and therapists in general have jumped on the DSM bandwagon because it creates more “patients” for them to treat, and so we make money out of people’s distress.’
He points to meta-analyses by psychiatrists Joanna Moncrieff and David Healy that have demonstrated not only that many psychiatric medications are no more effective than placebo but that some are actively dangerous. ‘They kill people. Maybe modern training tries to give a more balanced picture of mental distress; individual psychiatrists are doing the best they can in difficult circumstances, given the tools they’ve got, but biological psychiatry should carry a big danger label. We need a psychosocial model of mental health, not a biological one.’
Sanders argues that the whole mental health care system has to change, and that this change will inevitably come from the bottom up. That, he says, is where counsellors and psychotherapists should focus their energies. ‘As a therapist, your hands are tied in a system that gives consultant psychiatrists all the power. You have no say and you can make things worse for your client if you go into battle with it.’ Instead, therapists should seek out their nearest mental health user or survivor group – for example the Hearing Voices Network or Mad Pride – and support them. ‘Some people are calling the mental health service user movement the last civil rights movement in the western world. For years academics argued for a social model for disability and it made not the slightest difference, but then disabled people started to take direct action and make a nuisance of themselves and that is what changed the law in this country.’
The APA says it is still on course to publish the revised DSM-5 in 2013. The Chair of the Task Force was invited to contribute to this article, but declined.
If the symptoms fit...
These are two of the new diagnoses in DSM-5.
Oppositional defiant disorder
Symptoms of this childhood disorder include:
‘A. A persistent pattern of angry and irritable mood along with defiant and vindictive behavior as evidenced by four (or more) of the following symptoms being displayed with one or more persons other than siblings.
Angry/Irritable mood
1. Loses temper
2. Is touchy or easily annoyed by others
3. Is angry and resentful
Defiant/Headstrong behaviour
4. Argues with adults
5. Actively defies or refuses to comply with adults’ requests or rules
6. Deliberately annoys people
7. Blames others for his or her mistakes or misbehavior
Vindictiveness
8. Has been spiteful or vindictive at least twice within the past six months.’
Premenstrual dysphoric disorder
Symptoms listed for this diagnosis include:
- ‘Mood swings, feeling suddenly sad or tearful or increased sensitivity to rejection
- Marked irritability or anger or increased interpersonal conflicts
- Marked depressed mood, feelings of hopelessness or self-deprecating thoughts
- Marked anxiety, tension, feelings of being “keyed up” or “on edge”
- Lethargy, easy fatigability or marked lack of energy
- Marked change in appetite, overeating or out of control
- Other physical symptoms such as breast tenderness or swelling, joint or muscle pain, a sensation of “bloating”, weight gain.’
The online petition against DSM-5 is at www.ipetitions.com/petition/dsm5. Details about No More Psychiatric Labels can be found at www.criticalpsychiatry.net
Reference:
1. Varese F, Smeets F, Drukker M et al. Childhood adversities increase the risk of psychosis: a meta-analysis of patient-control, prospective and cross-sectional cohort studies. Schizophrenia Bulletin. 2012. Published online 29 March. doi: 10.1093/schbul/sbs050
Article quotes
| ‘I see a lot of people who are wanting a therapist a couple of weeks after a major bereavement and are quite disappointed when I say what they are going through is really quite normal’ | |
| ‘We are increasing antidepressant prescribing to children, despite guidelines telling us to limit them, and that is because it is a very subjective diagnosis and there is always going to be a market’ |
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