1 Boring Old Man

Drug treatments in people with intellectual disability and challenging behaviour

by Peter Tyrer, Sally-Ann Cooper, and Angela Hassiotis

British Medical Journal. 2014 348:g4323.

[full text on-line]

Time to rethink?

Do we still need to be reminded that the drug treatment of people with intellectual disability is often prolonged and not without dangers? We probably do. Drug treatment has been a mainstay for managing a common syndrome subsumed under the label “aggressive challenging behaviour” since chlorpromazine was first introduced for its treatment over 40 years ago… Challenging behaviour is the most common disturbance requiring intervention in intellectual disability services, but it does not have proper diagnostic status in standard psychiatric classifications.

Yet this does not inhibit the wholesale import of adult psychopharmacology into its management. Psychotropic medication in its many forms — mainly antipsychotics, sedatives and tranquillisers, antidepressants, and mood stabilisers — has seen extensive off-label prescribing for the past 50 years. Thus, a recent population based cohort study of 1023 adults with intellectual disabilities showed that 49.5% were taking some form of psychotropic drug, with 23.2% taking an antipsychotic despite only 4.4% having a psychotic disorder…

This prescribing would not be a concern if adverse effects were few and easily corrected, but neither of these is true. The high levels of obesity, metabolic syndrome, and diabetes in this population are largely due to these drugs and predispose to premature mortality. National audits such as those carried out by the Prescribing Observatory for Mental Health suggest that more people with intellectual disability are being regularly checked for known and established side effects of antipsychotic medication in secondary care. But there is a lack of primary care data on whether people with intellectual disability prescribed psychotropic drugs receive similar care and are targeted as a higher risk group. Once these drugs are prescribed they far too often become part of long term management, reinforced by the nervousness of care staff with limited knowledge of psychopharmacology and reluctance of practitioners and carers to alter a treatment when it may be wrongly perceived as effective. Attempts to stop these drugs after people have been taking them for many months or years have had only limited success.

What is the evidence for the benefits of these drugs in the treatment of challenging behaviour? Virtually none. Almost all the evidence in favour comes from small trials conducted by drug companies. Yet it would be perverse if doctors continued to prescribe these drugs, knowing about their adverse effects, if they were entirely without efficacy, and many claim that they cannot care adequately for their patients without the option of drug treatment. We therefore need clear indications for drug treatment, as well as to develop a range of more effective psychosocial treatments, for which there is now increasing evidence, but there is still ground to cover. In the interim, a key element is education of prescribers… Good randomised trials, preferably not funded by the drug industry, are needed to show efficacy. At present there are no randomised trials with adequate numbers that can give definitive advice on the value of any drug group in this population..

Drug treatment of challenging behaviour in people with intellectual disability should no longer be on the sidelines of evidence based medicine. If we are going to achieve parity of esteem for people with mental illness, we can no longer tolerate our ignorance on this subject. Quite apart from the deficiencies in evidence allowing dogma and opinion to rule, the cost of prescribing these drugs is enormous. If they truly are unnecessary, clinicians, pharmacists, service managers, and those who fund services for people with intellectual disability need to know, and soon.

Which brings me to Hamlet and company, the tragic figures in Shakespeare’s immortal play. Thirty plus years ago, my kid sister [now a retired academic] wrote a paper about that play, Hamlet, "A Man to Double Business Bound", out of her usual genre [Milton]. She analyzed the play using Double Bind theory, and did a mighty fine job of it, if I do say so myself [ignoring my obvious COI]. I knew Double Bind theory, but her paper etched it on my brain, and I thank her for that. It was an invaluable tool in understanding the narratives of the patients I saw over the years, and it was no small factor in working out my own dilemmas – as the life of a physician is filled with Double Binds that never stop coming. A Double Bind, oddly enough, has four commands: Two injunctions that are diametric opposites [thus the synonym – an impossible situation] – one overtly stated and the other usually covert. Then there’s a third injunction – that you have to act, to do something [even though there’s nothing right to do]. And the final rule caps the nightmare, you can’t address the obvious impossibility of this complex of commands. All you can think to do is pick one or the other side and surely fail; or give endless soliloquies about a paralysis of mind; or go crazy. Most psychotherapists can think of endless examples in a heartbeat. I sure can [see postscript…].

So you’re a doctor and a parent/caregiver brings a mentally retarded child to see you who is oppositional/challenging/disruptive in the waiting room and in your office. Then you look at the child’s parent/caregiver and you see a person hanging on by a thread, on the edge of tears, spent from dealing with this child. Maybe it’s a Foster Parent, one you already know to be a real trooper, about to give up return the child to DFCS. And you think hope that an antipsychotic might possibly help [or you can’t think of anything else to do], knowing full well the long term side effect profile of the drugs. That’s when the prescriptions often get written, even by the most principled doctor in the clinic. If you do nothing, you’ve done nothing, reinforcing the hopelessness the parent/caregiver already feels. If it doesn’t work, you’re in trouble because you’ve implied that medication is the way to go and what’s next? If it does work, you’re committing to a road you might really not want to be on sooner than you think. That’s what a Double Bind feels like – absolutely nothing right to do, and a pressure to act [yesterday].

Tyrer et al have written an excellent editorial. They obviously don’t think these kids should be on antipsychotics or at least not like they are now, but they don’t preach, rant, or moralize like many ["those damn doctors think everybody needs to be on medications!"]. They simply present an all too common clinical problem, one that’s often handled by the gestalt of the moment with no clear evidence-based guidance. And their heading ["Time to rethink?"] is a confrontation of sorts, because they’re implying that this is a topic doctors don’t want to think about [I would add "don’t want to think about because it doesn’t have any apparent solution"]. And the definition of a confrontation is simple – telling someone something they don’t want to hear.