Abstract
With remarkable ease diagnosis can turn the fright of chaos into the comfort of the known; the burden of doubt into the pleasure of certainty; the shame of hurting others into the pride of helping them; and the dilemma of moral judgement into the clarity of medical truth. Because of their nature, functions, and meanings, diagnoses can do such things in efficient and powerful ways… W. Reich (p.205) [[1]]
At the heart of the unfolding story of Attention Deficit Hyperactivity Disorder (ADHD) are three questions: are these children ill?; if not, why do children behave so? and why do they present now? In this paper, I suggest that ethical considerations are paramount when distinguishing between children's ‘illness’ behaviour and behaviour that communicates emotional states such as anxiety, panic, sadness, grief, frustration and resentment. Examples of ethical problems that lead to biased diagnosis and non-rational prescribing highlight the challenge the doctor faces to avoid turning ‘moral judgement into… medical truth’.
Many researchers and clinicians accept ADHD as a valid diagnostic category unaware it is the focus of a USA National Institute of Health (NIH) [[2]] consensus statement: this states that ADHD remains of ‘unproven’ status and ‘should give pause to both researchers and clinicians who may have reified ADHD as a “thing” or a “true entity” (rather than a working hypothesis that serves scientific, communication, and clinical decision making purposes)’. The statement is ‘independent, expert and credible’, in spite of the controversy surrounding ADHD. Thirty-one experts provided scientific ‘testimonies’ to a consensus panel, the scientific ‘jury’. The draft was subjected to rigorous revision attesting to the authoritative nature of the final statement [[3]].
The NIH reminds developmentally minded child psychiatrists to assess and diagnose symptoms in childhood on the understanding that ‘chaotic’, ‘acting out’, ‘out of control’ behaviours, as found in ADHD, can be ascribed to biopsychosocial factors. For example, Rutter [[4]] notes that the ‘process of development constitutes the crucial link between genetic determinants and environmental variables, between sociology and individual psychology, and between physiogenic and psychogenic causes.’ (p.1) Psychiatrists face special concerns with families, educators and non-developmentally minded colleagues, since the nature of ADHD raises for each of these groups inherently ambiguous perspectives.
Eisenberg [[5]] points out two sources of ambiguity in child psychiatry: ‘insufficiency of information on which clinical decisions must be taken and (of) the frailty of the judgement we can… bring to bear on the human problems we face.’ Moreover, commonly occurring ‘flawed mental health care systems’ [[6]], introduce a duty for clinicians to make ethically clear judgements.
The child psychiatrist dealing with children with ADHD faces no less than three ethical challenges: to uphold the principle of acting in ‘the best interest of the child’; to respect ‘the rights of the child to be heard’; and to conduct rational diagnostic and prescribing practices [[7]].
Let us turn to examples where dubious ethical conduct threatens not only standards of care but also erodes the integrity of the ‘clinical process’ resulting in both overand under-diagnosis of ADHD. I agree with the NIH suggestion that frequency of prescribing medication ‘may be due in part to the limited time spent making the diagnosis’ [[3], p.186]. Such misdiagnosis, rather than different rates of prevalence, could thus account for large variations in prescribing throughout Australia (see Table 1).
Dexamphetamine prescribing in Australia (Pharmaceutical Benefits Scheme (PBS)). Methylphenidate is not on PBS
Categories of misdiagnosis
Reich [[1]] distinguishes between three categories of misdiagnosis: purposeful, non-purposeful and based on error. Financial interests may lead to the first while inherent limitations of DSM-IV can result in the second. Reich astutely observes that the third may derive from ‘the humane transformation of social deviance into medical illness’ (p.209).
On the other hand, we need to differentiate between ‘misdiagnosis’ and valid diagnosis when ‘good enough’ criteria inform the clinician. Before tackling this aspect, we should note a pervasive bias in child psychiatry. I repeatedly see children presenting symptoms that ‘mask’ a range of family conditions: acute stress; a crisis, such as death or divorce; long-standing dysfunction or mental illness in a parent or sibling. Overlooking this results in assessment bias even with the use of ‘objective’ measures.
In the absence of an objective test for ADHD, DSMIV relies on the interpretation of symptoms. Over- or under-diagnosis, is determined by at least three factors: ‘procedural validity’ (a concept introduced by Spitzer and Williams [[8]]) which revolves around the extent to which DSM-IV ADHD, as a diagnostic procedure, yields similar results to those of the DSM-III-R category and speaks to the issue of the validity of the assessment process. This is distinguishable from the validity of the diagnostic category itself (discussed previously). Thirdly, a potential ethical bias exists to which we now turn.
Intentional misdiagnosis and over-diagnosis
Reich observes that ‘… the ethical problem of diagnosis stems from its capacity for misuse – that is, the knowing misapplication of diagnostic categories to persons to whom they do not apply, a misapplication that may place those individuals at risk for the harmful effects of psychiatric diagnosis’ [[1], p.194].
In the USA, bias towards intentional misdiagnosis occurs where children receive ‘cash benefits to a maximum of approximately $6000 per year per beneficiary’ as part of a disability programme. This has led Perrin et al. [[9]] to conclude that diagnosis can ‘reflect bias because providers tend to code conditions and procedures that are likely to be reimbursed. Therefore, the diagnosis on claims may not accurately reflect the condition that children have’. Reich continues ‘… these effects [of misdiagnosis] include not only the loss of personal freedom, and not only the subjection to noxious psychiatric environments and treatments, but also the possibility of life-long labelling…’(p.194). We are compelled to ask: who carries ethical and legal responsibility for possible adverse effects on children's development at ages three or four, and even younger [[10]], when they are intentionally misdiagnosed with ADHD and committed to a treatment programme that includes non-rational prescribing in order that the family will qualify for a substantial disability allowance?
In Australia this issue demands attention given the South Australian Parliament Social Development Committee's inquiry into ADHD [[11]] with its emphatic recommendation ‘to determine a standard for best practice in the diagnosis of ADHD’ be urgently implemented ‘if we are to make any progress in tackling the complex issue of ADHD’ (p. 9).
Non-intentional misdiagnosis
Most clinical misdiagnosis is non-intentional, this defined by Reich as not resulting from wilful misapplication of psychiatric categories, but rather processes ‘much more subtle and insidious, much more part of the fabric of the field itself, and much more difficult to identify and stop’. The DSM-IV taskforce chair Allen Frances [[12]] observed that the classification perpetuates inattention to a ‘developmentally sensitive, interactive or longitudinal perspective… [and thus] limits the useful [sic] of the categories for both research and clinical assessment and treatment of children and adolescents’ (p. 164). This pervasive neglect is difficult to identify and stop precisely because, as part of the fabric of the ADHD picture, clinicians and researchers fail to recognize its insidious nature. Fortunately, the aforementioned Parliamentary inquiry articulated serious concerns in this regard.
Mistaken misdiagnosis
Jureidini and Mansfield [[13]], in highlighting the ethics of the psychiatrist–pharmaceutical company relationship, recommend that practitioners as individuals and as a profession, need to develop a ‘more healthy scepticism’ about their links in order to benefit patients. Overdiagnosis of ADHD becomes more complex when the doctor as prescriber is under the pervasive influence of advertising, combined with pressure from parents and teachers to ‘do something’ about a child's ‘problem’ behaviour.
Furthermore, the current ‘entrepreneurial ethos’ challenges the notion of intellectual integrity and independence of medical guidelines [[14]]. Relevant is the observation that DSM ‘listed a mere 60 illnesses in 1952; this grew to 145 in 1968 and in 1994 stood at 410, with strong potential for further growth’ [[15]]. Redner emphasizes ‘particularly badly affected by this constantly creeping diagnostic expansion have been children, whose least oddity or not quite normal (frequently confused with average) quirk is now assigned to some syndrome or other and treated with behaviour therapy and drugs. The ethics of all this is rarely called into question’ (p.238).
Conclusion
No simple explanation accounts for the ADHD controversy. I contend that a valid diagnosis can only be made after comprehensive assessment of the child in a family context, with additional information obtained, if needed, from the school and related settings. Furthermore, a valid diagnosis is predicated on the observation that childrens’ ‘symptoms’ may be necessary but not sufficient criteria to label them as ‘patients’.
In our quest for a biopsychosocial understanding of this constellation of clinical features, an ethical imperative remains: to avoid turning ‘moral judgement into… medical truth’ through misdiagnosis, whatever its origin.
Acknowledgements
My thanks to the following for their helpful comments on earlier versions of this paper: Sid Bloch, Chris Browning, Don Grant, Andrew Firestone, Rachel Falk, Shirley Prager and Frances Thomson Salo.