This was first posted on DXSUMMIT.ORG : A global platform for
rethinking mental health on Wednesday 22nd May 2013
Politicians and the powerful often want you to think that
“there is no alternative”. And one of the curious things about psychiatric
diagnosis is that people seem to have great difficulty in contemplating an
alternative way of doing things … despite the fact that alternatives are
ubiquitous and straightforward.
As I set out to write this blog, I thought I would
elaborate and detail the ‘problem-list, formulation’ approach. I was slightly
deflated when I re-read my own entry from earlier – because it all seems quite
clear. In the vision of services that I have in mind, we would eschew diagnosis
and instead work as a multidisciplinary team to identify a person’s key problems, develop a case formulation
– a set of working hypotheses about what might link the person’s problems, what
might have caused them, and what might help – and plan care.
I must admit that it seems pretty straightforward to me,
and I don’t see any need to add the unnecessary diagnostic element. What I mean
by this is that there is no need to add – in the key summary statement above –
the idea that we should also ‘take those key problems, apply arbitrary and
unscientific rules for their supposed co-occurrence, make unscientific
assumptions about underlying disease processes, add stigmatizing and misleading
labels, and begin a process of obfuscation and biological reductionism’. I
suggest we just identify the key problems, develop a case formulation and plan
care.
This doesn’t seem in any way incompatible with a close
working relationship with medical colleagues, and it doesn’t preclude medical
explanations – or diagnoses – when these are appropriate. But it is a good
basis to plan care, both for individuals and at a service level.
As I said in earlier pieces, there’s
work to be done. We know that diagnoses are inadequately poor tools for
identifying causal mechanisms, predicting prognosis, planning care – either for
individuals or as policy-makers – or communicating, precisely because of their
lack of reliability and validity. We also know that people have difficulty
understanding this; indeed, a recent blogger suggested
that diagnoses are necessary for communication “even if they’re wrong” - a
really worrying indication that the malevolent effects of diagnostic thinking
stretch as far as IQ!
People seem to worry that dropping the language of
diagnosis means that we’ll be left in a vague soup of narrative accounts,
making it difficult to give robust advice on “what works” for whom and when,
making it impossible to communicate in clear, precise, language and impossible
to plan. I don’t think that at all. We have a lot of work to do – psychiatry
has been dominated by the ‘diagnosis-treat’ approach for so long that we will
need to develop new systems and structures.
We will need a new lexicon of problems – it wouldn’t be
realistic to say that we all agree on the most important social and
psychological problems today, nor on the most efficient and effective ways to
describe them. So we’ll need to put some work into that – remembering, of
course, that diagnostic manuals require time and effort (and resources) to be
developed. Our work will have to be democratic rather than secretive, and will
have to be led by real people, service users, rather than the professionals,
who so frequently have vested financial and ‘guild’ interests.
It’s important, once again, to stress that identifying
problems is not the same as making diagnoses. One online commentator, trying
energetically to defend DSM-5 (and, in my opinion posing more questions than
she answered) suggested that the three new disorders of ‘Binge Eating Disorder’,
‘Excoriation Disorder’ and ‘Disruptive Mood Dysregulation Disorder’ were valid
because she comes across the problems of binge eating, skin picking and temper
tantrums in her clinical practice. I have no doubt she does. But while
identifying and responding to these problems is absolutely a clinician’s job,
it is unhelpful to think that adding the word ‘disorder’ after an identified
problem solves it. As we’ve argued before, these
ideas tend to lead away from genuine understanding towards the ludicrous idea
that “your daughter is having all these temper tantrums because she suffers
from disruptive mood dysregulation disorder” – a move away from explanation
towards a combination of circular thinking and bio-reductionist thinking. And,
of course, we fear that medication will naturally follow.
In these cases dropping the language of disorder merely
makes sense. What it removes, here, is the assumption of underlying pathology,
the danger of circular thinking, and the risk of medicalization. These are huge
benefits (as we’ve previously argued), but the language of problem - binge
eating, skin picking and temper tantrums – is clearly simpler (there is none of
the additional complexity critics fear). The implications for clinical
practice, for research, and for service planning, of a simpler and more
straightforward language should be obvious.
In other areas, such as ‘schizophrenia’, these same benefits
accrue, but there are others, too. As well as adding additional and unnecessary
complexity (and we might well conclude that the language used is designed
specifically to create a professional mystique – ‘excoriation disorder’…),
making assumptions about underlying pathology, subtly promoting biomedical
thinking and medical responses and falling into circular logic, many diagnoses
combine individual problems into clusters believed to reflect ‘syndromes’ (with
presumed, and usually biological, underlying pathology). These combination
rules are, as we know, hugely problematic, fail to reflect the ‘joints’ of
nature and leave clinicians frequently unable to agree. They also mean that the
very many possible combinations of different problems means that there is a
confusing mess of huge numbers of diagnosis. The DSM project, of course, was
designed to rationalize and simplify the system. But we’ve been left with more,
not fewer, diagnoses with worse, not better, reliability statistics.
Finally… treatment… Well, the idea is, of course, that
diagnosis should guide treatment. Unfortunately we also know that treatment (as
well as being best when guided by a more integrative formulation) is best when based
on problems rather than diagnoses.
A little detail might be helpful. I have a client (a real
person, but someone I will try to avoid identifying). Mary is a 56 year old
woman. She has some moderate learning difficulties (finding it challenging to
achieve the qualifications commonly received at the end of high school,
struggling to pass a driving test) and some problems understanding the
emotions, intentions and behaviours of other people (what is commonly called
the autistic spectrum). She has never worked (she does some voluntary work at
her local supermarket, stacking shelves and general cleaning) but lives
entirely supported by state benefits. Nevertheless, she has married (to a man
who also has some mental health issues), and lives independently with their
dog. During her late teens and early 20s, she was very troubled by intrusive
auditory hallucinations, but these have largely ceased to trouble her. It’s
noticeable that these voices are still present, but Mary has learned to live
with them.
These problems – the moderate learning difficulties, the
autistic spectrum problems, and the auditory hallucinations – became
significant recently as the UK Government implemented a programme to reduce the
cost of benefit payments to people with long-term disabilities, meaning that
Mary and her husband were assessed with a view to reducing their benefits (the
alternatives, of course, being “get a job” or “tell the panel quite how crazy
and inadequate you are”). Mary was anxious, her sleep suffered, she talked more
about her auditory hallucinations, and even discussed taking her own life.
Mary’s problems would meet diagnostic criteria for
moderate learning difficulties, autistic spectrum disorder and (probably)
schizophrenia. In practice, the first two diagnoses are relatively
uncontroversial in themselves – they have relatively high reliability and
validity, probably because both relate to known underlying causal mechanisms.
The diagnosis of ‘schizophrneia’ is much more problematic. It’s unreliable (two
clinicians disagree) and invalid (there isn’t a coherent ‘syndrome’ in the real
world that maps onto this diagnosis). It’s also very difficult to know how to
address the fact that Mary’s problems come and go and she copes with them to a
greater or lesser extent from time to time. Most importantly, in the
traditional diagnosis-driven world, we have seen two significant clinical
problems. First, different parts of the healthcare system disagree as a result
of these diagnostic codes – should she be cared for by the learning disability
or adult mental health services? More worryingly, in the first service, the
voices are largely ignored, in the second the voices are seen as inevitable
given her learning difficulties. The diagnoses don’t help treatment; they get
in the way. But finally, to respond with the intelligent and humane package of
care that Mary needs to service this current stressful time, we have had to
battle against a diagnostic model – voices are symptoms of ‘schizophrenia’, so
the underlying illness should be treated… or ignored, since Mary has a learning
difficulty. The idea that her experiences are understandable for what they are
is a difficult one to punch through the collective ignorance of a
diagnosis-driven, reductionist system.
I am not trying to say that traditional, diagnostic,
psychiatry cannot either describe Mary’s problems adequately or respond to them
humanely. But I am saying it would be easier and more appropriate to respond
with a problem-formulation approach. Mary’s problems can be described in great
detail or very simply. To say that she has long-standing problems with moderate
learning difficulties and autistic spectrum problems, and (as a result of
specific stressors) now has problems with auditory hallucinations strikes me as
parsimonious and elegant. Invoking the concept of ‘schizophrenia’ adds nothing
that the problem-based approach can offer, and instead leads to potential
confusion and inappropriate and unnecessary assumptions.
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