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Conceptual issues in theorising anorexia nervosa: Mere matters of semantics?
International Journal of Law and Psychiatry 26 (2003) 585 – 598
Conceptual issues in theorising anorexia nervosa: Mere matters of semantics?$ Pierre Beumont a,F, Terry Carney b,* a
b
Professor of Psychological Medicine, University of Sydney, Sydney, Australia Professor of Law, Faculty of Law, University of Sydney, 173-175 Phillip Street, Sydney 2000, Australia
1. Introduction Language is an imprecise and pliable tool. Professional disciplines develop their own specialised usages and terms, some of which may differ from the commonly understood meanings. These deviations are important to note, as terminological clarity is a prerequisite to clear thought and analysis. Their recognition is particularly important in discussions between members of different professions, such as medicine and law, and should not be dismissed as esoteric debate or point scoring. This paper suggests ways in which the vexed issue of involuntary treatment for severe anorexia nervosa might profit from greater clarity of terminology, especially those terms that deal with the nature of the condition (as disease, illness, or syndrome) and those that refer to the capacity of the person with severe anorexia nervosa.
2. The medical concepts of ‘disease’ and ‘illness’ Our starting point is to note that within medicine, it may be useful to attempt to differentiate between a ‘disease’ and an ‘illness,’ whereas these terms are synonyms in lay understanding (OED). That is not to say that medicine has an agreed or straightforward way $ This paper is part of a larger study, funded over 3 years by the Australian Research Council Discovery Grants scheme, titled Involuntary Treatment of Severely Ill Anorexia Nervosa Patients: A role for law in therapy? The other members of the multidisciplinary study team are Dr. David Tait of the University of Canberra and Stephen Touyz, Professor of Clinical Psychology, University of Sydney. * Corresponding author. E-mail address: [email protected] (T. Carney). F (Professor Beumont died on October 1, 2003 as this paper was in press).
0160-2527/$ – see front matter D 2003 Elsevier Inc. All rights reserved. doi:10.1016/j.ijlp.2003.09.001
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of delineating these terms. It does not. However, it does draw the distinction, and it is the distinction that is the foundation of the first part of our analysis (Boorse, 1975). Within medicine, a disease usually refers to a pathological problem affecting one or other organ of the body. An ‘illness’ on the other hand, is the human condition of someone who feels that he or she is not as he or she ought to be. It has a normative, and subjective, dimension to it; it encapsulates a social stance (Finlay-Jones, 1989; Tengland, 2001). Thus, in some medicolegal and other settings, being ‘ill’ may excuse a person from certain responsibilities in civil society, such as the need to work, while also generating new expectations—such as the expectation that someone with an illness will seek out and accept treatment.1 The disease component is not altogether unproblematic, as illustrated by the development of the ‘biopsychosocial’ model of diseases and disability (Bickenbach, Chatterji, et al., 1999), recently adopted (Hartley & Wirz, 2002; Stineman, 2001) in the World Health Organisations’ International Classification of Impairments, Activities and Participation (‘ICIDH-2’), and by the somewhat changeable nature of nosologies in WHO’s former instrument the International Classification of Diseases (ICD-10, 1992) or by the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-lV, 1994). Some terms show a measure of generality between the two systems, but for others the meanings diverge. Moreover, the medical paradigm makes some other, wider, assumptions as well: ‘health’ tends to be conceived within medicine in terms of a biomedical construct. Epidemiologists are interested in the incidence or prevalence of disease or illness within a population (and with lowering the incidence of morbidity and mortality), while clinical medicine ‘seeks to cure disease and extend life in individuals’ (Commers, 2002, p. 2). On the other hand, lay understandings and conceptions of health and illness are too broad and confused to be defined succinctly. Most disorders in general (physical) medicine are both diseases and illnesses, such as pulmonary tuberculosis for instance. Processes like consolidation of lung tissue, inflammation, or infiltration can be defined concretely. However, most psychiatric or mental illnesses do not have a basis in brain disease (there are exceptions, e.g., tertiary syphilis) and are not as easy to define. This is because the mind is an abstraction like the soul, not an organ of the body. Psychiatric texts therefore do not devote much space to notions of ‘disease’ and ‘illness’ (Tengland, 2001, pp. 15–23), often preferring concepts of normality/abnormality or of a ‘disorder’ (DSM-lV, 1994). The concept underlying the way psychiatric illness is interpreted relates the ‘episteme’ current at the time, as illustrated by Michael Foucault in his book Madness and Civilization.2 In place of the concrete pathology of physical disease that can be ascertained by physical measurement, psychiatry substitutes the concept of psychopathology. But psychopathology, like the mind itself, is insubstantial; and the 1
Australia’s disability pension regime enshrines such a configuration of expectations: a person with at least a stipulated level of incapacity as measured by tables of impairment is not expected to work, but their illness only qualifies for rating of its level of impairment once it is sufficiently stabilised, diagnosed, and ‘treated’ (Carney, 2001: Part D, Div 1). 2 For an interesting speculation on anorexic ‘pursuit of lightness’ and its possible association with protection of personal space, asceticism, and perfectionism, see Giordano (2002).
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meaning of psychopathological and psychiatric terms (as with those used in social sciences) is more arbitrary than are those used in the natural and biological sciences. This level of abstraction is obvious even when looking at the terms used in different languages for psychiatric concepts, which are often not strictly equivalent. For instance, the English word anxiety, with its strong sense of anticipation, is not what is meant by the German word ‘angst’ (fear). Similarly, delusion, deriving from the Latin verb ludo (I play or am mischievous), is not equivalent to the German Wahnvorstellung or Wahndenkbeeld— literally crazy proposition or mental image. It is when we come to recognise those difficulties in relation to a psychiatric illness like anorexia nervosa that we get into trouble. Some seek to minimise this by turning instead to the notion of a ‘syndrome’ as the basis for defining the medical condition sought to be delineated. But changing the name does not eliminate the problem. As a patient who wrote to one of the present authors retorted, when told he was not using his correct name, ‘You can’t fool me by changing your name. I mean you, whatever you call yourself’. Moreover, ‘syndrome’ has its own technical meaning and introduces yet another perspective that brings its own difficulties. 2.1. Anorexia nervosa as ‘syndrome’ As Beumont (1993) has pointed out, most psychiatric illnesses are defined in terms of a syndrome; that is, an association of symptoms and signs that are consistently associated with each other, which point to a common course of illness, and (preferably) which respond to a common form of treatment. As a syndrome, anorexia nervosa is as well established as any other psychiatric illness (Beumont, 1995; Beumont, Russell, et al., 1993; Beumont, Russell, & Touyz, 1995). It is the diagnostic term applied to a condition of self-induced undernutrition usually seen in adolescent girls and young women. Its cause is unclear and it does not arise from any discernible pathological change to the brain or other organ of the body. Therefore, it is not a disease (which in medical parlance implies structural or chemical change), but rather an illness that is an experience of ill health. In these respects, it is similar to most psychiatric diagnostic terms, which refer to conditions of unknown causation, without discernible pathological changes (Beumont, 1993). Nevertheless, under the former Mental Health Act 1958 of New South Wales, Justice Powell concluded that anorexia nervosa did not qualify as a ‘mental illness’ (which was not defined in the Act) for the purposes of committal.3 This was because the diagnosis was focussed on the ‘overvalued idea’ about being thin. He specifically did not identify it as a mental illness in the ‘classic sense’, such as a psychotic illness or delusional state.4 In these respects, it is similar to most psychiatric diagnostic terms, which refer to conditions of unknown causation without discernible pathological changes, but without necessarily constituting what a lay person would term ‘madness’ or mental illness.
3 4
A similar result currently applies in Israel (Melamed, Mester, Margolin, & Kalian, 2003; this issue). JAH v Medical Superintendent of Rozelle Hospital (NSW Supreme Court, S4 of 1986, Powell J).
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The patient must fulfil specified operational criteria if the diagnosis of a syndrome is to be made. The diagnostic criteria for anorexia nervosa, as given in the (ICD-10, 1992) and the (DSM-lV, 1994), are basically unaltered from those suggested in the original descriptions of the illness more than 100 years ago. Essentially these criteria are as follows: (a) a significant state of undernutrition, together with its physical consequences; (b) brought about deliberately by the patient using a variety of weight-losing behaviours; (c) associated with a fear of being fat and an overvalued idea about the desirability of being thin; and (d) the absence of other physical or psychiatric illnesses that might account for the patient’s symptoms. It is criterion (c) that is crucial to anorexia nervosa’s status as a psychiatric or mental illness. If a person fulfils the other criteria of the syndrome but does so because they are on a hunger strike so as to gain a personal or political advantage, he or she is not considered ill, rather as manipulative. If the reason is that she is psychotically deluded that her food is being poisoned so that she refuses to eat it or so depressed and retarded as to be unable to eat or even to chew or swallow, she is identified as psychiatrically and mentally ill. But if the refusal to eat, no matter how stubborn nor how deleterious to health, is due to an overvalued idea, she has only a psychiatric or psychological abnormality, which does not constitute mental illness. This distinction is the crux of the matter. Is it possible to define criterion (c) in terms that are both consistent and comprehensive in order to decide whether a person’s food refusal is a voluntary decision, which might lay claim to being respected by the law, or a symptom of illness, which might justify beneficially intended intervention, or merely a foible indicating psychological deviation but not mental illness per se? 2.2. The definition of ‘overvalued ideas’? There are differences in meaning for the terms delusion and overarching idea between psychiatrists and lay persons. Firstly, they are terms of meaning only to outside observers not to the patient experiencing them. Thus, defining delusion as ‘a fixed belief incorrigible and impervious to logical argument, whose context is ideocentric’ (e.g., ‘the FBI are after me: I know that because my lights failed last night’) has no meaning to the patient. He or she could not possibly complain that they do not have a false belief, which they hold persistently, despite all evidence to the contrary (Beumont, 1993; Jaspers, 1923). In fact, falsity of belief is quite an unhelpful criterion in any event. All the false beliefs once held, in good faith, by scientists in the past were mistakes not delusions (Tengland, 2001, p. 109). Indeed, to follow one popular theory of science (Popper, 1959), all hypotheses in science are potentially false beliefs because they must stand by their subservience to the principle that they must always be open to subsequent falsification. We need something more. It is issues such as these that are considered in the highly technical debate found in texts on psychopathology (Beumont, 1997) that we develop in another paper (Beumont & Carney, 2003). For our current purpose, we will attempt to resolve the difficulty by examining less recherche´ arguments.
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2.3. Context of the idea A solution might lie in adopting a more nuanced analysis: by paying attention to the temporal spot occupied by the ‘idea’ within the overall life course of the illness; and/or by incorporating reference to the gravity of the ‘consequences’ stemming from that inflated idea. In the latter case, much as Buchanan and Brock (1989) did in constructing their analysis of capacity to consent; an analysis that balanced off issues such as levels of comprehension against the ‘gravity’ of the consequences at stake. On this view, it could be argued that the law should adopt a more flexible approach. Thus, the idea that drives an anorexia nervosa patient may be an ‘overvalued idea’ (an idea given excessive salience),5 and usually that idea emerges earlier in the life course of the illness when the patient is excessively worried about weight. But it becomes something more than that when a desperately ill and emaciated patient refuses any sustenance because she believes that there is nothing the matter with her, or that even if there is something wrong, it is no adequate reason to eat and sustain her life. This balancing off of consequences is more common in debates about ‘competence,’ where some bioethicists (the ‘externalists’) would require a greater degree of understanding before respecting a decision to reject treatment than would be insisted on if someone was consenting to therapy. Here, it is argued that the risk of ill health or even death effectively raises the bar—creating an ‘asymmetry’ between consent and refusal (Richardson, 2002, pp. 704–705). Other commentators (‘internalists’) prefer to focus on the quality of the decision, uncluttered with reference to the risk stemming from recognition of that decision. Recent work by Buller argues for a two stage approach: only if a person lacks competence would we move to address the second stage issue of what form of medical intervention advances that person’s ‘best interests’—a question that balances off the claim to respect patient autonomy against countervailing claims of medical ‘duty of care’ (Richardson, 2002, id.). 2.4. Concepts of ‘impaired mental function’ or ‘disordered thought’ Under the Mental Health Act 1990 (NSW), one can now argue that an overvalued idea, which has culminated in (or become associated with) a state of imminent death, is indicative of ‘mental illness’ as now defined in the Act. This is because it can be said to represent a ‘serious impairment of mental function, a serious disorder, of. . .thought.’ Under the earlier (1954–1990) Act, this argument was not sustainable. This was because although mental illness was not defined in that legislation, the courts concluded that it was implied that a mental illness, for the terms of the Act, was one which displayed the more 5 There is a divergence of opinion within psychiatry as to what constitutes and overvalued idea, as opposed to a delusion. The simplified concept is that an overvalued idea is merely a delusion held with less conviction. A more sophisticated interpretation is that an overvalued idea is one which lacks the egocentricity of a delusion; e.g., ‘The FBI often persecute innocent citizens’, rather than ‘the FBI are persecuting me’. Similar disputes arise in the distinction between hallucinations and pseudo-hallucinations (Hare, 1973).
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classic features of a psychotic illness, viz., one that showed the characteristic symptomatology of schizophrenia (Griffiths, 1996).6 So the moral may be that we should avoid making definitions, which are imperfect and which hinder rather than help! But equally could it not be said that all this part of our discussion really reveals is that anorexia nervosa is too large a camel to pass through the eye of the needle of ‘purist’ definitions of mental illness? And that the solution might instead lie in broadening those definitions to encompass notions of disordered thought, as Richardson suggests may be necessary when framing responses to forms of intellectual disability (Richardson, 2002)? Certainly, this is the trend in the drafting and interpretation of these ‘gatekeeping’ concepts, as they appear in mental health legislation so far as anorexia nervosa cases are concerned (Carney, Tait, et al., 2003). So perhaps concepts of ‘capacity’ or ‘consent’ hold better prospects of delineating the circumstances in which coercive treatment interventions might be warranted?
3. The capacity and consent analysis 3.1. The capacity dimension Capacity issues come in several different guises, each of which pose some terminological difficulties. Capacity is an appealing concept because the usual legal and lay approach to a person being mentally ill is that they have a diminished capacity to make reasonable judgments due to their mental state. That is sometimes the case, though even then, it is in relation to specific issues rather than all judgments (e.g., in relation to treatment, but not necessarily ordering a meal). However, capacity is another slippery concept. In an important paper, Tan and Jones (2001, p. 304) recently urged greater precision in the use of three terms relevant to our analysis:7 (i) ‘consent’ (or ‘acquiescence’ to treatment, based in showing capacity, voluntariness, and adequate information); (ii) ‘capacity’ (the legal ability to consent to treatment, usually grounded in common law or statutory tests insisting on an ‘ability to understand and retain treatment information,’ as well as to weigh it in the balance and make a ‘free choice’); and
6 In JAH v Medical Superintendent of Rozelle Hospital (1986) S14 of 1986 Powell J concluded that anorexia nervosa was not a ‘mental illness’ as defined in § 4 of the then 1958 Mental Health Act 1958 (NSW). Powell applied earlier rulings about dementia and similar conditions which also fell outside the definition: RAP v AEP [1982] 2 NSWLR 508; PY v RJS [1982] 2 NSWLR 700; and CF v TCML [1983] 1 NSWLR 138. 7 The fourth term discussed, that of ‘assent’, relates to the level of engagement with a young person who otherwise lacks the legal capacity to consent.
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(iii) ‘competence’ (a new term, rejecting the North American usage as being synonymous with ‘capacity’; and instead defined as the ‘clinical’ ability of a person to consent to treatment, embracing a wider set of factors than those encompassed in the legal test of capacity). 3.1.1. Capacity as ‘ability’ For Tengland (2001, pp. 100–102), capacity is simply synonymous with ‘ability.’ Tan and Jones (2001, p. 304) agree, observing that (with the exception of a ‘status’ definition sometimes adopted for young children) the components of the definition of capacity ‘are functional definitions that depend upon enquiry about the individual’s abilities.’ As we shall see below, some Australian Mental Health Tribunals equate refusal of ‘consent’ (or the inability to give such consent) as, among other things, being coincident with the ‘ability’ to appreciate the nature and gravity of their illness. 3.1.2. Capacity as a ‘normative’ concept In a legal context, however, a normative construct of capacity may be substituted for the focus on ability. Thus, Keywood (2002, p. 2) has argued from the English cases, The dynamic of the medical-legal relationship endorses the ‘truth’ of medicine and positions the patient as ‘other’ to a hypothetical model of well-being which constitutes the ‘norm’ and which law uses to determine how legal subjects should be treated. . .[As in Re W which] suggested that all treatment refusals made by the [anorexia nervosa patient] will be regarded as symptomatic of the illness and thus not competently made: ‘‘. . .because of one of the symptoms of AN is a desire. . .to ‘be in control’. [or in another case] where. . .various protests and ‘‘battle of wills’’ are interpreted as symptomatic of. . .mental disorder and [indicative of] an inability to weigh information in the balance in order to arrive at a particular decision. While we take a different route to that taken by Keywood (2002), we too conclude that treatment refusal can become a short-hand way of expressing the logical sequence that starts with the anorexia nervosa syndrome and ends in the conclusion that capacity to consent has been lost, as is indicated below. 3.1.3. The ‘consent’ analysis Another of the pertinent approaches to conceptualising involuntary treatment of anorexia nervosa cases is to think about it as principally an issue of ‘consent’. Bioethical disputes about whether a seriously ill patient can give an effective consent to participation in a randomised clinical trial where one option is a placebo is sufficiently analogous to shed light on the case of anorexia nervosa treatment, because here too it is contended that the person is in practice someone who is unable to consent. This is of heightened significance for commentators who elevate consent to treatment and the ability to give (or withhold) meaningful consent, to be effectively the sole or decisive value (Appelbaum, 2002b), adding urgency to devising instruments to measure the extent of capacity (Heinssen,
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Perkins, et al., 2001; Moser, Schultz, et al., 2002; Palmer, Nayak, et al., 2002). For Appelbaum (2002a, 2002b) (among others), patient participation is rendered highly problematic by research findings showing that even after it is explained to research subjects that they may be assigned to ‘nil’ (placebo) treatment, they harbour an unshakable belief that their doctor will see to it that they do receive the most appropriate therapy. Indeed the MacArthur Competence project has generated an ‘index’ to measure this ‘therapeutic misconception’ at an operational level (Grisso, 2002). This has been termed the moral sense of consent, or consent as ‘autonomous authorisation’ (Pedroni & Pimple, 2001, p. 4). Other commentators argue in favour of wider ethical frames of reference, which place less store in locating participation in a ‘perfect’ consent. They propose instead paying regard to levels of risk and benefit to individuals, to concepts of exploitation of the person, and to questions of cultural expectations (Miller & Brody, 2002). A position often grounded in alternative philosophical foundations such as a Kantian ‘respect for the dignity of the subject’ (Pedroni & Pimple, 2001, p. 3). Calling it a ‘sociolegal’ sense of consent, they go on to write that, Informed consent in the sociolegal sense of the term refers to practices and conventions that make it socially or legally acceptable to use a person as a research subject, and includes the rules, regulations, and cultural and professional practices governing informed consent to research (Pedroni & Pimple, 2001, p. 4). Although it may seem an odd analogy, we suggest that the same distinction is at work in the characterisation of ‘consent’ within anorexia nervosa treatment. Cases where the Victorian Mental Health Review Board has dealt with anorexia nervosa help to reinforce our point. In the Australian State of Victoria, the only basis for legally sanctioning involuntary treatment of anorexia nervosa cases is to obtain an order under the Mental Health Act 1986, which legislation makes refusal of consent to treatment, or an inability to consent, one of the necessary ingredients of making out a case for involuntary admission (Carney, 2002). The Victorian Board adopts a test of being able to understand the ‘broad nature and effect of the treatment for which consent is sought’.8 But the Board often sets a high threshold of required competence, frequently citing evidence of the patient’s denial that they suffer from an eating disorder,9 or ambivalence around its acceptance, as demonstrating lack of adequate insight to ground a consent, as in Re EC (2001a, 2000b) where it remarked, When asked directly if she thought she had an eating disorder she responded initially by saying ‘even if I did’, which does not indicate that she had an eating disorder. In addition 8
Re SF (1989) at p.145. In Re ET, the Board placed weight on the inappropriateness of an explanation given in evidence about the most recent episode of weight loss where ‘ET said that she may not have been eating properly because they [she and her partner] may not have been eating properly because they forgot to take food away on a camping trip’ (Reasons, at p. 6). 9
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EC clearly expressed the belief that her current body weight of 42 kilograms and a body mass index of 17.2 were satisfactory despite clear medical evidence to the contrary. . .[coupled with a history of hospital admissions, this] indicates that EC. . .did not have a sufficient understanding of her mental illness and the need for its treatment for the Board to be satisfied that she was able to give informed consent (Reasons, at p. 7).10 Even a patient concession that she did suffer from anorexia nervosa was insufficient in Re DM (2002) because of the medical evidence that ‘this insight was very new (within the last 2 days) and that it was ‘‘limited’’ in relation to her condition’ (Reasons, at p. 11). While that insight need not be ‘full or complete,’ the majority (McSherry dissenting) concluded that: [D]espite her statements before the Board, DM had not yet demonstrated that her insight was sufficient, in that she has not demonstrated a willingness or capacity to abide by the advice of her treating team (p. 12). Likewise, acceptance of her diagnosis of anorexia nervosa did not lead to discharge of the legal orders for a 19-year-old patient with a weight of 35.7 kg and a BMI of 13.5 in Re KJ (2001, p. 8) because the Board found that she ‘did not demonstrate an understanding of the seriousness of her illness and how seriously low her body weight is. For example, she clearly said that she was happy with the way she looked and did not feel too thin. . .’ On the other hand, a more cooperative patient who had boosted her weight to 48 kg before plateauing below the clinic’s goal of 50 kg was found to be capable of consenting and was discharged in Re EF (1996, p. 351). And a stabilised, more cooperative, and insightful patient was discharged in Re MR#2 (2000, p. 5), having earlier failed to win release when less insightful, in Re MR#1 (2000). More extreme features of presentation at the hearing itself also eases proof, as in Re SJ (2001, p. 7), where the Board simply observed that the applicant: [D]id not appear to understand what was happening during the Board hearing. She seemed perplexed and confused and was unable to answer a number of questions put to her. In these circumstances it was obvious to the Board that she was unable to give informed consent to the necessary treatment for her illness. So a more contextualised reading of consent and capacity appears to characterise the work of the mental health tribunals in their dealings with anorexia nervosa.
4. Policy implications of our analysis What our fieldwork and analysis appears to have shown, then, is that there is another facet to the conceptualisation of treatment of anorexia nervosa. Namely, that it is the illness itself, 10
In the opinion of the present authors, having a BMI of 17.2, although being suboptimal, would not pose sufficient threat to a patient’s health to justify involuntary treatment.
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which leads to the judgement of the need for involuntary treatment and not only that it produces an incapacity to make reasonable judgements. In terms of our earlier discussion, this is closest to the ‘externalist’ line of bioethical reasoning (Richardson, 2002). That is to say, the sociolegal concept is one that elides most of the distinctions commentators identify as being of importance. Instead of carefully unpacking the concepts and definitions, resort is had to a simple or ‘lay’ interpretation. Much in the way that the criminal law has developed such a robust test for the insanity defence that it has little in common with concepts used in psychiatry (McSherry, 1993). However, that very robustness of definition of criminal responsibility may shed light on our concerns. Under the McNaughton Rules on the insanity defence, if a person murders his wife because he believes, by reason of his illness, that she is being unfaithful, he is nevertheless held to be responsible for his actions because he was capable of realising that it is wrong to murder an unfaithful wife. However, if the same man stabs his wife in the street because, as a result of his illness, he has come to ‘know with certainty’ (be deluded) that she has become the devil in disguise and is trying to kill his children, then he is not responsible because what he did was not wrong in the light of what his illness had led him to believe. In the first instance, an argument could be made for diminished responsibility; but in the second, an argument can be made for no responsibility. This is because the person’s mind has in a sense been ‘flooded’ with misconceptions stemming from the illness, irrespective of retention of otherwise powerful intellectual abilities such as those of logical reasoning and argument within the constraints imposed by navigating within that ‘flood plain of the mind’ (to stretch our crude metaphor). In anorexia nervosa, the mental disturbance (illness, disorder) may be so powerful as to ‘fill’ the patient’s mind. She feels so guilty about eating that literally she would prefer to die than eat appropriately. This is not merely a reduction in her ability to make responsible decisions. Rather, it is subjection to a mental state that overrides the decision-making process—not really a decision in the ordinary sense at all. That ‘flooding’ effect might, within Tengland’s (2001, p. 112) analysis, so impair the capacity for what he defines as ‘practical rationality,’ as to warrant involuntary intervention on the ground that the ability to choose means of achieving desired goals has been lost or because the goal itself is unfeasible. Or in other words, that it manifests a loss of the ‘person’s mental abilities to reach vital goals’ (id., p. 94) to adopt Nordenfelt’s (2000) paradigm. A person suffering a late-in-illness cycle severe risk of death or morbidity due to the effects of severe anorexia nervosa is arguably someone who has (temporarily) lost the capacity to achieve their ‘vital’ goal of survival. Preservation of that ‘vital goal,’ as some writers term it, may warrant involuntary intervention in some circumstances (Beumont & Vandreycken, 1998); an analysis that brings anorexia nervosa squarely back within mainstream sociolegal conceptions of ‘Millean’ mental health, with its focus on averting harm to self or to others (Carney, 2003). 4.1. An alternative analysis An alternative reading of this material is also possible. As previously observed in the context of empirical examination of adult guardianship tribunals, the work of such bodies is
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genuinely interdisciplinary in character (Carney & Tait, 1997) and develops its own ‘narrative’ (Carney & Tait, 1998) for instance. In dealing with consent to sterilisation procedures, tribunals were more respectful of narratives built around recognition of the voice or autonomy interests of the disabled person and of social analyses of the context of disability management than was the case when courts dealt with such matters: Indeed, courts were found to accord greater weight to expert medical opinion and concerns expressed by close family carers (Carney & Tait, 1999). The present study suggests that in anorexia nervosa cases at least, mental health tribunals appear to work in different ways to that of adult guardianship tribunals (Carney et al., 2003). Medical perspectives may be more prominent. If so, would it be altogether surprising if the narrative adopted was one which was weighted towards Tan and Jones’ (2001, p. 304) clinical concept of ‘competence’? A concept, which they expand as: The reason for needing a distinct clinical concept [of ‘competence’] is that clinicians probably do use many factors that are not formally recognised in law when coming to conclusions about their patients’ ability to consent to treatment. Examples include the ability. . .to make reasonably consistent decisions over time; the consistency of the patient’s current decision with his usual personality and previously expressed views; the ability. . .to make his decision in the context of both his current and future circumstances, and current and future benefits and risks; [and] the influence of emotional states or mental illness. . .on the current decision. So the conflation of meaning, which we identified earlier, may actually entail a shift towards application of a narrative of ‘clinical competence.’
5. Conclusion To bring greater clarity to the terminological debate, we advocate a viewpoint that, under certain circumstances, an anorexia nervosa patient may be subjected to ‘compulsory treatment.’ We agree with Rathner (1998) that a patient cannot be coerced into treatment for her anorexia nervosa illness. But we differ in suggesting that she can be coerced into accepting the physical intervention necessary to save her life. An analogy might be the right to intervene to empty the contents of the stomach of a patient who has attempted suicide by ingesting a lethal dose of medication. One rationale for saying that such intervention is warranted is that it is necessary to preserve a set of ‘vital goals,’ which Tengland (2001, p. 98) contends can be ‘reduced to survival.’ As he goes on to say, ‘To survive all people need to have, at least, nourishment, shelter and some human contact,’ a minimal set of values that he then expands to include some more complex activities, which constitute a ‘minimally decent living’ such as the ability to earn income and take care of oneself. Perhaps that is precisely what lies at the core of a delineation of the concept of ‘clinical competence.’
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References Appelbaum, P. S. (2002a). Involving decisionally impaired subjects in research: The need for legislation. American Journal of Geriatric Psychiatry, 10(2), 120 – 124. Appelbaum, P. S. (2002b). Clarifying the ethics of clinical research: A path toward avoiding the therapeutic misconception. American Journal of Bioethics, 2(ii), 22 – 23. Beumont, P. (1993). Phenomenology and the history of psychiatry. Australian and New Zealand Journal of Psychiatry, 26, 532 – 545. Beumont, P. (1995). The clinical presentation of anorexia and bulimia nervosa. In K. Brownell, & C. Fairburn (Eds.), Eating disorders and obesity: A comprehensive handbook ( pp. 151 – 155). New York: Guildford Press. Beumont, P. (1997). Mental disorders: Psychopathology, and classification. In P. Beumont, G. Andrews, P. Boyce, & V. Carr (Eds.), Psychological medicine: A companion to management of mental disorders ( pp. 17 – 42). Sydney: WHO. Beumont, P., & Carney, T. (2003). Can psychiatric terminology be translated into legal regulation: The anorexia example. A paper delivered at the conference: 28th of the Congress of the International Academy of Law and Mental Health. Sydney, Australia. Beumont, P., Russell, J., & Touyz, S. (1993). The treatment of anorexia nervosa. Lancet, 341, 1635 – 1640. Beumont, P., Russell, J., & Touyz, S. (1995). Psychological concerns in the maintenance of dieting disorders. In G. Szmukler, C. Dare, & J. Treasure (Eds.), Handbook of eating disorders: Theory, treatment and research ( pp. 221 – 241). London: Wiley. Beumont, P., & Vandreycken, W. (1998). Challenges and risks for health care professionals. In W. Vandereycken, & P. Beumont (Eds.), Treating eating disorders: Ethical, legal and personal issues ( pp. 1 – 29). London: Athlone. Bickenbach, J., Chatterji, S., Badley, E., & Ustun, T. (1999). Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Social Science & Medicine, 48, 1173 – 1187. Boorse, C. (1975). On the distinction between disease and illness. Philosophy and Public Affairs, 5, 49 – 68. Buchanan, A., & Brock, D. (1989). Deciding for others. Cambridge: C.U.P. Carney, T. (2001). Income security. In LBC (Ed.), Laws of Australia. Sydney: Thompson LBC, title 22.3: 1 – 389. Carney, T. (2002). Regulation of treatment of severe anorexia nervosa: Assessing the options? Australian Health Law Bulletin, 11(3), 25 – 32. Carney, T. (2003). Mental health law in postmodern society: Time for new paradigms? Psychiatry, Psychology, and Law, 10, 12 – 32. Carney, T., & Tait, D. (1997). The adult guardianship experiment: Tribunals and popular justice. Sydney: Federation Press. Carney, T., & Tait, D. (1998). Adult guardianship: Narrative readings in the ‘‘shadow’’ of the law? International Journal of Law and Psychiatry, 21, 147 – 162. Carney, T., & Tait, D. (1999). Sterilisation: Tribunal experiments in popular justice? International Journal of Law and Psychiatry, 22, 177 – 197. Carney, T., Tait, D., Saunders, D., Touyz, S., & Beumont, P. (2003). Institutional options in management of coercion in anorexia treatment: The Antipodean experiment. International Journal Law and Psychiatry, 26(4) (ref XX-XX). Commers, M. (2002). Determinants of health: Theory, understanding, portrayal, policy. Dordrecht: Kluwer Academic Publishing. DSM-lV (1994). Diagnostic and statistical manual of mental disorders. Washington, DC: American Psychiatric Association. Finlay-Jones, R. (1989). Disease and illness. In P. Beumont, & R. Hampshire (Eds.), Textbook of psychiatry ( pp. 1 – 7). Melbourne: Blackwell. Giordano, S. (2002). Qu’un souffle de vent: An exploration of anorexia nervosa. Medical Humanities, 28(1), 3 – 8.
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Griffiths, R. (1996). Compulsory treatment and anorexia nervosa. Australian Journal of Forensic Sciences, 28, 35 – 38. Grisso, T. (2002, September 30). Method for a Study of Therapeutic Misconception. CMHSR Working Paper No. 1. Center for Mental Health Services Research, University of Massachutsetts Medical School. Hare, E. (1973). A short note on pseudo-hallucinations. British Journal of Psychiatry, 122(569), 469 – 476. Hartley, S., & Wirz, S. (2002). Development of a ‘communication disability model’ and its implication on service delivery in low-income countries. Social Science & Medicine, 54(10), 1543 – 1557. Heinssen, R. K., Perkins, D. O., Appelbaum, P. S., & Fenton, W. S. (2001). Informed consent in early psychosis research: National Institute of Mental Health Workshop, 15 November 2000. Schizophrenia Bulletin, 27(4), 571 – 583. ICD-10 (1992). International classification of diseases. World Health Organisation, Geneva. Jaspers, K. (1923). Allgemeine psychopathologie, Hoenig H. J., & Hamilton M. W., Trans.; original work published 1963, Manchester. Keywood, K. (2002). Rethinking the anorexic body. A paper delivered at the conference of the 27th Congress of the International Academy of Law and Mental Health. Amsterdam. McSherry, B. (1993). Defining what is a ‘‘disease of the mind’’: The untenability of current legal interpretations. Journal of Law and Medicine, 1, 76. Miller, F., & Brody, H. (2002). What makes placebo-controlled trials unethical? American Journal of Bioethics, 2(ii), 3 – 9. Moser, D. J., Schultz, S. K., Arndt, S., Benjamin, M. L., Fleming, F. W., Brems, C. S., Paulsen, J. S., Appelbaum, P. S., & Andreasen, N. C. (2002). Capacity to provide informed consent for participation in schizophrenia and HIV research. American Journal of Psychiatry, 159(7), 1201 – 1207. Nordenfelt, L. (2000). Action, ability and health. International Library of Ethics, Law, and the New Medicine. Dordrecht: Kluwer. Palmer, B. W., Nayak, G. V., Dunn, L. B., Appelbaum, P. S., & Jeste, D. V. (2002). Treatment-related decisionmaking capacity in middle-aged and older patients with psychosis: A preliminary study using the MacCAT-T and HCAT. American Journal of Geriatric Psychiatry, 10(2), 207 – 211. Pedroni, J., & Pimple, K. (2001). A brief introduction to informed consent in research with human subjects. Poynter Centre for the Study of Ethics and American Institutions, Indiana University, accessed 2002, September 30. Popper, K. (1959). The logic of scientific discovery. New York: Basic Books. Rathner, G. (1998). A plea against compulsory treatment of anorexia nervosa patients. In W. Vandereycken, & P. Beumont (Eds.), Treating eating disorders: Ethical, legal and personal issues ( pp. 179 – 215). London: Athlone Press. Richardson, G. (2002). Autonomy, guardianship and mental disorder: One problem, two solutions. Modern Law Review, 65(v), 702 – 723. Stineman, M. (2001). Defining the population, treatments, and outcomes of interest: Reconciling the rules of biology with meaningfulness. American Journal of Physical Medicine and Rehabilitation, 80(2), 147 – 159. Tan, J., & Jones, D. (2001). Children’s consent. Current Opinion in Psychiatry, 14, 303 – 307. Tengland, T. A. (2001). Mental health: A philosophical analysis. Dordrecht: Kluwer Academic Publishing.
Cases Re DM 2002. Re DM. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 22 February 2002 (Newby & Wood, McSherry dissenting). Re EC 2001. Re EC. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 17 July 2001 (Meadows, Newby & Gidley). Re EC 2001. Re EC. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 5 June 2001 (Hopkins, Mead & Lush). Re EF 1996. In the review of EF an Involuntary Patient at Royal Melbourne Hospital (1996) 2 MHRBD (Vic) 346.
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Re KJ 2001. Re KJ. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 14 August 2001 (Meadows, Gallois & Gidley). Re MR#1 2000. Re MR#1. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 16 May 2000 (Lush, Fowler & Barlow). Re MR#2 2000. Re MR#2. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 18 July 2000 (Hopkins, McShane & Mellsop). Re SF 1989. In the appeal of SF an Involuntary Patient at Royal Park Hospital (1987 – 1991) Decisions of the Mental Health Review Board Victoria, 137 (12 January 1989, Rees, Barlow & McConnell). Re SJ 2001. Re SJ. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 4 December 2001 (Good, Lush & Gardiner).
Conceptual issues in theorising anorexia nervosa: Mere matters of semantics?$ Pierre Beumont a,F, Terry Carney b,* a
b
Professor of Psychological Medicine, University of Sydney, Sydney, Australia Professor of Law, Faculty of Law, University of Sydney, 173-175 Phillip Street, Sydney 2000, Australia
1. Introduction Language is an imprecise and pliable tool. Professional disciplines develop their own specialised usages and terms, some of which may differ from the commonly understood meanings. These deviations are important to note, as terminological clarity is a prerequisite to clear thought and analysis. Their recognition is particularly important in discussions between members of different professions, such as medicine and law, and should not be dismissed as esoteric debate or point scoring. This paper suggests ways in which the vexed issue of involuntary treatment for severe anorexia nervosa might profit from greater clarity of terminology, especially those terms that deal with the nature of the condition (as disease, illness, or syndrome) and those that refer to the capacity of the person with severe anorexia nervosa.
2. The medical concepts of ‘disease’ and ‘illness’ Our starting point is to note that within medicine, it may be useful to attempt to differentiate between a ‘disease’ and an ‘illness,’ whereas these terms are synonyms in lay understanding (OED). That is not to say that medicine has an agreed or straightforward way $ This paper is part of a larger study, funded over 3 years by the Australian Research Council Discovery Grants scheme, titled Involuntary Treatment of Severely Ill Anorexia Nervosa Patients: A role for law in therapy? The other members of the multidisciplinary study team are Dr. David Tait of the University of Canberra and Stephen Touyz, Professor of Clinical Psychology, University of Sydney. * Corresponding author. E-mail address: [email protected] (T. Carney). F (Professor Beumont died on October 1, 2003 as this paper was in press).
0160-2527/$ – see front matter D 2003 Elsevier Inc. All rights reserved. doi:10.1016/j.ijlp.2003.09.001
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of delineating these terms. It does not. However, it does draw the distinction, and it is the distinction that is the foundation of the first part of our analysis (Boorse, 1975). Within medicine, a disease usually refers to a pathological problem affecting one or other organ of the body. An ‘illness’ on the other hand, is the human condition of someone who feels that he or she is not as he or she ought to be. It has a normative, and subjective, dimension to it; it encapsulates a social stance (Finlay-Jones, 1989; Tengland, 2001). Thus, in some medicolegal and other settings, being ‘ill’ may excuse a person from certain responsibilities in civil society, such as the need to work, while also generating new expectations—such as the expectation that someone with an illness will seek out and accept treatment.1 The disease component is not altogether unproblematic, as illustrated by the development of the ‘biopsychosocial’ model of diseases and disability (Bickenbach, Chatterji, et al., 1999), recently adopted (Hartley & Wirz, 2002; Stineman, 2001) in the World Health Organisations’ International Classification of Impairments, Activities and Participation (‘ICIDH-2’), and by the somewhat changeable nature of nosologies in WHO’s former instrument the International Classification of Diseases (ICD-10, 1992) or by the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-lV, 1994). Some terms show a measure of generality between the two systems, but for others the meanings diverge. Moreover, the medical paradigm makes some other, wider, assumptions as well: ‘health’ tends to be conceived within medicine in terms of a biomedical construct. Epidemiologists are interested in the incidence or prevalence of disease or illness within a population (and with lowering the incidence of morbidity and mortality), while clinical medicine ‘seeks to cure disease and extend life in individuals’ (Commers, 2002, p. 2). On the other hand, lay understandings and conceptions of health and illness are too broad and confused to be defined succinctly. Most disorders in general (physical) medicine are both diseases and illnesses, such as pulmonary tuberculosis for instance. Processes like consolidation of lung tissue, inflammation, or infiltration can be defined concretely. However, most psychiatric or mental illnesses do not have a basis in brain disease (there are exceptions, e.g., tertiary syphilis) and are not as easy to define. This is because the mind is an abstraction like the soul, not an organ of the body. Psychiatric texts therefore do not devote much space to notions of ‘disease’ and ‘illness’ (Tengland, 2001, pp. 15–23), often preferring concepts of normality/abnormality or of a ‘disorder’ (DSM-lV, 1994). The concept underlying the way psychiatric illness is interpreted relates the ‘episteme’ current at the time, as illustrated by Michael Foucault in his book Madness and Civilization.2 In place of the concrete pathology of physical disease that can be ascertained by physical measurement, psychiatry substitutes the concept of psychopathology. But psychopathology, like the mind itself, is insubstantial; and the 1
Australia’s disability pension regime enshrines such a configuration of expectations: a person with at least a stipulated level of incapacity as measured by tables of impairment is not expected to work, but their illness only qualifies for rating of its level of impairment once it is sufficiently stabilised, diagnosed, and ‘treated’ (Carney, 2001: Part D, Div 1). 2 For an interesting speculation on anorexic ‘pursuit of lightness’ and its possible association with protection of personal space, asceticism, and perfectionism, see Giordano (2002).
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meaning of psychopathological and psychiatric terms (as with those used in social sciences) is more arbitrary than are those used in the natural and biological sciences. This level of abstraction is obvious even when looking at the terms used in different languages for psychiatric concepts, which are often not strictly equivalent. For instance, the English word anxiety, with its strong sense of anticipation, is not what is meant by the German word ‘angst’ (fear). Similarly, delusion, deriving from the Latin verb ludo (I play or am mischievous), is not equivalent to the German Wahnvorstellung or Wahndenkbeeld— literally crazy proposition or mental image. It is when we come to recognise those difficulties in relation to a psychiatric illness like anorexia nervosa that we get into trouble. Some seek to minimise this by turning instead to the notion of a ‘syndrome’ as the basis for defining the medical condition sought to be delineated. But changing the name does not eliminate the problem. As a patient who wrote to one of the present authors retorted, when told he was not using his correct name, ‘You can’t fool me by changing your name. I mean you, whatever you call yourself’. Moreover, ‘syndrome’ has its own technical meaning and introduces yet another perspective that brings its own difficulties. 2.1. Anorexia nervosa as ‘syndrome’ As Beumont (1993) has pointed out, most psychiatric illnesses are defined in terms of a syndrome; that is, an association of symptoms and signs that are consistently associated with each other, which point to a common course of illness, and (preferably) which respond to a common form of treatment. As a syndrome, anorexia nervosa is as well established as any other psychiatric illness (Beumont, 1995; Beumont, Russell, et al., 1993; Beumont, Russell, & Touyz, 1995). It is the diagnostic term applied to a condition of self-induced undernutrition usually seen in adolescent girls and young women. Its cause is unclear and it does not arise from any discernible pathological change to the brain or other organ of the body. Therefore, it is not a disease (which in medical parlance implies structural or chemical change), but rather an illness that is an experience of ill health. In these respects, it is similar to most psychiatric diagnostic terms, which refer to conditions of unknown causation, without discernible pathological changes (Beumont, 1993). Nevertheless, under the former Mental Health Act 1958 of New South Wales, Justice Powell concluded that anorexia nervosa did not qualify as a ‘mental illness’ (which was not defined in the Act) for the purposes of committal.3 This was because the diagnosis was focussed on the ‘overvalued idea’ about being thin. He specifically did not identify it as a mental illness in the ‘classic sense’, such as a psychotic illness or delusional state.4 In these respects, it is similar to most psychiatric diagnostic terms, which refer to conditions of unknown causation without discernible pathological changes, but without necessarily constituting what a lay person would term ‘madness’ or mental illness.
3 4
A similar result currently applies in Israel (Melamed, Mester, Margolin, & Kalian, 2003; this issue). JAH v Medical Superintendent of Rozelle Hospital (NSW Supreme Court, S4 of 1986, Powell J).
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The patient must fulfil specified operational criteria if the diagnosis of a syndrome is to be made. The diagnostic criteria for anorexia nervosa, as given in the (ICD-10, 1992) and the (DSM-lV, 1994), are basically unaltered from those suggested in the original descriptions of the illness more than 100 years ago. Essentially these criteria are as follows: (a) a significant state of undernutrition, together with its physical consequences; (b) brought about deliberately by the patient using a variety of weight-losing behaviours; (c) associated with a fear of being fat and an overvalued idea about the desirability of being thin; and (d) the absence of other physical or psychiatric illnesses that might account for the patient’s symptoms. It is criterion (c) that is crucial to anorexia nervosa’s status as a psychiatric or mental illness. If a person fulfils the other criteria of the syndrome but does so because they are on a hunger strike so as to gain a personal or political advantage, he or she is not considered ill, rather as manipulative. If the reason is that she is psychotically deluded that her food is being poisoned so that she refuses to eat it or so depressed and retarded as to be unable to eat or even to chew or swallow, she is identified as psychiatrically and mentally ill. But if the refusal to eat, no matter how stubborn nor how deleterious to health, is due to an overvalued idea, she has only a psychiatric or psychological abnormality, which does not constitute mental illness. This distinction is the crux of the matter. Is it possible to define criterion (c) in terms that are both consistent and comprehensive in order to decide whether a person’s food refusal is a voluntary decision, which might lay claim to being respected by the law, or a symptom of illness, which might justify beneficially intended intervention, or merely a foible indicating psychological deviation but not mental illness per se? 2.2. The definition of ‘overvalued ideas’? There are differences in meaning for the terms delusion and overarching idea between psychiatrists and lay persons. Firstly, they are terms of meaning only to outside observers not to the patient experiencing them. Thus, defining delusion as ‘a fixed belief incorrigible and impervious to logical argument, whose context is ideocentric’ (e.g., ‘the FBI are after me: I know that because my lights failed last night’) has no meaning to the patient. He or she could not possibly complain that they do not have a false belief, which they hold persistently, despite all evidence to the contrary (Beumont, 1993; Jaspers, 1923). In fact, falsity of belief is quite an unhelpful criterion in any event. All the false beliefs once held, in good faith, by scientists in the past were mistakes not delusions (Tengland, 2001, p. 109). Indeed, to follow one popular theory of science (Popper, 1959), all hypotheses in science are potentially false beliefs because they must stand by their subservience to the principle that they must always be open to subsequent falsification. We need something more. It is issues such as these that are considered in the highly technical debate found in texts on psychopathology (Beumont, 1997) that we develop in another paper (Beumont & Carney, 2003). For our current purpose, we will attempt to resolve the difficulty by examining less recherche´ arguments.
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2.3. Context of the idea A solution might lie in adopting a more nuanced analysis: by paying attention to the temporal spot occupied by the ‘idea’ within the overall life course of the illness; and/or by incorporating reference to the gravity of the ‘consequences’ stemming from that inflated idea. In the latter case, much as Buchanan and Brock (1989) did in constructing their analysis of capacity to consent; an analysis that balanced off issues such as levels of comprehension against the ‘gravity’ of the consequences at stake. On this view, it could be argued that the law should adopt a more flexible approach. Thus, the idea that drives an anorexia nervosa patient may be an ‘overvalued idea’ (an idea given excessive salience),5 and usually that idea emerges earlier in the life course of the illness when the patient is excessively worried about weight. But it becomes something more than that when a desperately ill and emaciated patient refuses any sustenance because she believes that there is nothing the matter with her, or that even if there is something wrong, it is no adequate reason to eat and sustain her life. This balancing off of consequences is more common in debates about ‘competence,’ where some bioethicists (the ‘externalists’) would require a greater degree of understanding before respecting a decision to reject treatment than would be insisted on if someone was consenting to therapy. Here, it is argued that the risk of ill health or even death effectively raises the bar—creating an ‘asymmetry’ between consent and refusal (Richardson, 2002, pp. 704–705). Other commentators (‘internalists’) prefer to focus on the quality of the decision, uncluttered with reference to the risk stemming from recognition of that decision. Recent work by Buller argues for a two stage approach: only if a person lacks competence would we move to address the second stage issue of what form of medical intervention advances that person’s ‘best interests’—a question that balances off the claim to respect patient autonomy against countervailing claims of medical ‘duty of care’ (Richardson, 2002, id.). 2.4. Concepts of ‘impaired mental function’ or ‘disordered thought’ Under the Mental Health Act 1990 (NSW), one can now argue that an overvalued idea, which has culminated in (or become associated with) a state of imminent death, is indicative of ‘mental illness’ as now defined in the Act. This is because it can be said to represent a ‘serious impairment of mental function, a serious disorder, of. . .thought.’ Under the earlier (1954–1990) Act, this argument was not sustainable. This was because although mental illness was not defined in that legislation, the courts concluded that it was implied that a mental illness, for the terms of the Act, was one which displayed the more 5 There is a divergence of opinion within psychiatry as to what constitutes and overvalued idea, as opposed to a delusion. The simplified concept is that an overvalued idea is merely a delusion held with less conviction. A more sophisticated interpretation is that an overvalued idea is one which lacks the egocentricity of a delusion; e.g., ‘The FBI often persecute innocent citizens’, rather than ‘the FBI are persecuting me’. Similar disputes arise in the distinction between hallucinations and pseudo-hallucinations (Hare, 1973).
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classic features of a psychotic illness, viz., one that showed the characteristic symptomatology of schizophrenia (Griffiths, 1996).6 So the moral may be that we should avoid making definitions, which are imperfect and which hinder rather than help! But equally could it not be said that all this part of our discussion really reveals is that anorexia nervosa is too large a camel to pass through the eye of the needle of ‘purist’ definitions of mental illness? And that the solution might instead lie in broadening those definitions to encompass notions of disordered thought, as Richardson suggests may be necessary when framing responses to forms of intellectual disability (Richardson, 2002)? Certainly, this is the trend in the drafting and interpretation of these ‘gatekeeping’ concepts, as they appear in mental health legislation so far as anorexia nervosa cases are concerned (Carney, Tait, et al., 2003). So perhaps concepts of ‘capacity’ or ‘consent’ hold better prospects of delineating the circumstances in which coercive treatment interventions might be warranted?
3. The capacity and consent analysis 3.1. The capacity dimension Capacity issues come in several different guises, each of which pose some terminological difficulties. Capacity is an appealing concept because the usual legal and lay approach to a person being mentally ill is that they have a diminished capacity to make reasonable judgments due to their mental state. That is sometimes the case, though even then, it is in relation to specific issues rather than all judgments (e.g., in relation to treatment, but not necessarily ordering a meal). However, capacity is another slippery concept. In an important paper, Tan and Jones (2001, p. 304) recently urged greater precision in the use of three terms relevant to our analysis:7 (i) ‘consent’ (or ‘acquiescence’ to treatment, based in showing capacity, voluntariness, and adequate information); (ii) ‘capacity’ (the legal ability to consent to treatment, usually grounded in common law or statutory tests insisting on an ‘ability to understand and retain treatment information,’ as well as to weigh it in the balance and make a ‘free choice’); and
6 In JAH v Medical Superintendent of Rozelle Hospital (1986) S14 of 1986 Powell J concluded that anorexia nervosa was not a ‘mental illness’ as defined in § 4 of the then 1958 Mental Health Act 1958 (NSW). Powell applied earlier rulings about dementia and similar conditions which also fell outside the definition: RAP v AEP [1982] 2 NSWLR 508; PY v RJS [1982] 2 NSWLR 700; and CF v TCML [1983] 1 NSWLR 138. 7 The fourth term discussed, that of ‘assent’, relates to the level of engagement with a young person who otherwise lacks the legal capacity to consent.
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(iii) ‘competence’ (a new term, rejecting the North American usage as being synonymous with ‘capacity’; and instead defined as the ‘clinical’ ability of a person to consent to treatment, embracing a wider set of factors than those encompassed in the legal test of capacity). 3.1.1. Capacity as ‘ability’ For Tengland (2001, pp. 100–102), capacity is simply synonymous with ‘ability.’ Tan and Jones (2001, p. 304) agree, observing that (with the exception of a ‘status’ definition sometimes adopted for young children) the components of the definition of capacity ‘are functional definitions that depend upon enquiry about the individual’s abilities.’ As we shall see below, some Australian Mental Health Tribunals equate refusal of ‘consent’ (or the inability to give such consent) as, among other things, being coincident with the ‘ability’ to appreciate the nature and gravity of their illness. 3.1.2. Capacity as a ‘normative’ concept In a legal context, however, a normative construct of capacity may be substituted for the focus on ability. Thus, Keywood (2002, p. 2) has argued from the English cases, The dynamic of the medical-legal relationship endorses the ‘truth’ of medicine and positions the patient as ‘other’ to a hypothetical model of well-being which constitutes the ‘norm’ and which law uses to determine how legal subjects should be treated. . .[As in Re W which] suggested that all treatment refusals made by the [anorexia nervosa patient] will be regarded as symptomatic of the illness and thus not competently made: ‘‘. . .because of one of the symptoms of AN is a desire. . .to ‘be in control’. [or in another case] where. . .various protests and ‘‘battle of wills’’ are interpreted as symptomatic of. . .mental disorder and [indicative of] an inability to weigh information in the balance in order to arrive at a particular decision. While we take a different route to that taken by Keywood (2002), we too conclude that treatment refusal can become a short-hand way of expressing the logical sequence that starts with the anorexia nervosa syndrome and ends in the conclusion that capacity to consent has been lost, as is indicated below. 3.1.3. The ‘consent’ analysis Another of the pertinent approaches to conceptualising involuntary treatment of anorexia nervosa cases is to think about it as principally an issue of ‘consent’. Bioethical disputes about whether a seriously ill patient can give an effective consent to participation in a randomised clinical trial where one option is a placebo is sufficiently analogous to shed light on the case of anorexia nervosa treatment, because here too it is contended that the person is in practice someone who is unable to consent. This is of heightened significance for commentators who elevate consent to treatment and the ability to give (or withhold) meaningful consent, to be effectively the sole or decisive value (Appelbaum, 2002b), adding urgency to devising instruments to measure the extent of capacity (Heinssen,
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Perkins, et al., 2001; Moser, Schultz, et al., 2002; Palmer, Nayak, et al., 2002). For Appelbaum (2002a, 2002b) (among others), patient participation is rendered highly problematic by research findings showing that even after it is explained to research subjects that they may be assigned to ‘nil’ (placebo) treatment, they harbour an unshakable belief that their doctor will see to it that they do receive the most appropriate therapy. Indeed the MacArthur Competence project has generated an ‘index’ to measure this ‘therapeutic misconception’ at an operational level (Grisso, 2002). This has been termed the moral sense of consent, or consent as ‘autonomous authorisation’ (Pedroni & Pimple, 2001, p. 4). Other commentators argue in favour of wider ethical frames of reference, which place less store in locating participation in a ‘perfect’ consent. They propose instead paying regard to levels of risk and benefit to individuals, to concepts of exploitation of the person, and to questions of cultural expectations (Miller & Brody, 2002). A position often grounded in alternative philosophical foundations such as a Kantian ‘respect for the dignity of the subject’ (Pedroni & Pimple, 2001, p. 3). Calling it a ‘sociolegal’ sense of consent, they go on to write that, Informed consent in the sociolegal sense of the term refers to practices and conventions that make it socially or legally acceptable to use a person as a research subject, and includes the rules, regulations, and cultural and professional practices governing informed consent to research (Pedroni & Pimple, 2001, p. 4). Although it may seem an odd analogy, we suggest that the same distinction is at work in the characterisation of ‘consent’ within anorexia nervosa treatment. Cases where the Victorian Mental Health Review Board has dealt with anorexia nervosa help to reinforce our point. In the Australian State of Victoria, the only basis for legally sanctioning involuntary treatment of anorexia nervosa cases is to obtain an order under the Mental Health Act 1986, which legislation makes refusal of consent to treatment, or an inability to consent, one of the necessary ingredients of making out a case for involuntary admission (Carney, 2002). The Victorian Board adopts a test of being able to understand the ‘broad nature and effect of the treatment for which consent is sought’.8 But the Board often sets a high threshold of required competence, frequently citing evidence of the patient’s denial that they suffer from an eating disorder,9 or ambivalence around its acceptance, as demonstrating lack of adequate insight to ground a consent, as in Re EC (2001a, 2000b) where it remarked, When asked directly if she thought she had an eating disorder she responded initially by saying ‘even if I did’, which does not indicate that she had an eating disorder. In addition 8
Re SF (1989) at p.145. In Re ET, the Board placed weight on the inappropriateness of an explanation given in evidence about the most recent episode of weight loss where ‘ET said that she may not have been eating properly because they [she and her partner] may not have been eating properly because they forgot to take food away on a camping trip’ (Reasons, at p. 6). 9
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EC clearly expressed the belief that her current body weight of 42 kilograms and a body mass index of 17.2 were satisfactory despite clear medical evidence to the contrary. . .[coupled with a history of hospital admissions, this] indicates that EC. . .did not have a sufficient understanding of her mental illness and the need for its treatment for the Board to be satisfied that she was able to give informed consent (Reasons, at p. 7).10 Even a patient concession that she did suffer from anorexia nervosa was insufficient in Re DM (2002) because of the medical evidence that ‘this insight was very new (within the last 2 days) and that it was ‘‘limited’’ in relation to her condition’ (Reasons, at p. 11). While that insight need not be ‘full or complete,’ the majority (McSherry dissenting) concluded that: [D]espite her statements before the Board, DM had not yet demonstrated that her insight was sufficient, in that she has not demonstrated a willingness or capacity to abide by the advice of her treating team (p. 12). Likewise, acceptance of her diagnosis of anorexia nervosa did not lead to discharge of the legal orders for a 19-year-old patient with a weight of 35.7 kg and a BMI of 13.5 in Re KJ (2001, p. 8) because the Board found that she ‘did not demonstrate an understanding of the seriousness of her illness and how seriously low her body weight is. For example, she clearly said that she was happy with the way she looked and did not feel too thin. . .’ On the other hand, a more cooperative patient who had boosted her weight to 48 kg before plateauing below the clinic’s goal of 50 kg was found to be capable of consenting and was discharged in Re EF (1996, p. 351). And a stabilised, more cooperative, and insightful patient was discharged in Re MR#2 (2000, p. 5), having earlier failed to win release when less insightful, in Re MR#1 (2000). More extreme features of presentation at the hearing itself also eases proof, as in Re SJ (2001, p. 7), where the Board simply observed that the applicant: [D]id not appear to understand what was happening during the Board hearing. She seemed perplexed and confused and was unable to answer a number of questions put to her. In these circumstances it was obvious to the Board that she was unable to give informed consent to the necessary treatment for her illness. So a more contextualised reading of consent and capacity appears to characterise the work of the mental health tribunals in their dealings with anorexia nervosa.
4. Policy implications of our analysis What our fieldwork and analysis appears to have shown, then, is that there is another facet to the conceptualisation of treatment of anorexia nervosa. Namely, that it is the illness itself, 10
In the opinion of the present authors, having a BMI of 17.2, although being suboptimal, would not pose sufficient threat to a patient’s health to justify involuntary treatment.
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which leads to the judgement of the need for involuntary treatment and not only that it produces an incapacity to make reasonable judgements. In terms of our earlier discussion, this is closest to the ‘externalist’ line of bioethical reasoning (Richardson, 2002). That is to say, the sociolegal concept is one that elides most of the distinctions commentators identify as being of importance. Instead of carefully unpacking the concepts and definitions, resort is had to a simple or ‘lay’ interpretation. Much in the way that the criminal law has developed such a robust test for the insanity defence that it has little in common with concepts used in psychiatry (McSherry, 1993). However, that very robustness of definition of criminal responsibility may shed light on our concerns. Under the McNaughton Rules on the insanity defence, if a person murders his wife because he believes, by reason of his illness, that she is being unfaithful, he is nevertheless held to be responsible for his actions because he was capable of realising that it is wrong to murder an unfaithful wife. However, if the same man stabs his wife in the street because, as a result of his illness, he has come to ‘know with certainty’ (be deluded) that she has become the devil in disguise and is trying to kill his children, then he is not responsible because what he did was not wrong in the light of what his illness had led him to believe. In the first instance, an argument could be made for diminished responsibility; but in the second, an argument can be made for no responsibility. This is because the person’s mind has in a sense been ‘flooded’ with misconceptions stemming from the illness, irrespective of retention of otherwise powerful intellectual abilities such as those of logical reasoning and argument within the constraints imposed by navigating within that ‘flood plain of the mind’ (to stretch our crude metaphor). In anorexia nervosa, the mental disturbance (illness, disorder) may be so powerful as to ‘fill’ the patient’s mind. She feels so guilty about eating that literally she would prefer to die than eat appropriately. This is not merely a reduction in her ability to make responsible decisions. Rather, it is subjection to a mental state that overrides the decision-making process—not really a decision in the ordinary sense at all. That ‘flooding’ effect might, within Tengland’s (2001, p. 112) analysis, so impair the capacity for what he defines as ‘practical rationality,’ as to warrant involuntary intervention on the ground that the ability to choose means of achieving desired goals has been lost or because the goal itself is unfeasible. Or in other words, that it manifests a loss of the ‘person’s mental abilities to reach vital goals’ (id., p. 94) to adopt Nordenfelt’s (2000) paradigm. A person suffering a late-in-illness cycle severe risk of death or morbidity due to the effects of severe anorexia nervosa is arguably someone who has (temporarily) lost the capacity to achieve their ‘vital’ goal of survival. Preservation of that ‘vital goal,’ as some writers term it, may warrant involuntary intervention in some circumstances (Beumont & Vandreycken, 1998); an analysis that brings anorexia nervosa squarely back within mainstream sociolegal conceptions of ‘Millean’ mental health, with its focus on averting harm to self or to others (Carney, 2003). 4.1. An alternative analysis An alternative reading of this material is also possible. As previously observed in the context of empirical examination of adult guardianship tribunals, the work of such bodies is
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genuinely interdisciplinary in character (Carney & Tait, 1997) and develops its own ‘narrative’ (Carney & Tait, 1998) for instance. In dealing with consent to sterilisation procedures, tribunals were more respectful of narratives built around recognition of the voice or autonomy interests of the disabled person and of social analyses of the context of disability management than was the case when courts dealt with such matters: Indeed, courts were found to accord greater weight to expert medical opinion and concerns expressed by close family carers (Carney & Tait, 1999). The present study suggests that in anorexia nervosa cases at least, mental health tribunals appear to work in different ways to that of adult guardianship tribunals (Carney et al., 2003). Medical perspectives may be more prominent. If so, would it be altogether surprising if the narrative adopted was one which was weighted towards Tan and Jones’ (2001, p. 304) clinical concept of ‘competence’? A concept, which they expand as: The reason for needing a distinct clinical concept [of ‘competence’] is that clinicians probably do use many factors that are not formally recognised in law when coming to conclusions about their patients’ ability to consent to treatment. Examples include the ability. . .to make reasonably consistent decisions over time; the consistency of the patient’s current decision with his usual personality and previously expressed views; the ability. . .to make his decision in the context of both his current and future circumstances, and current and future benefits and risks; [and] the influence of emotional states or mental illness. . .on the current decision. So the conflation of meaning, which we identified earlier, may actually entail a shift towards application of a narrative of ‘clinical competence.’
5. Conclusion To bring greater clarity to the terminological debate, we advocate a viewpoint that, under certain circumstances, an anorexia nervosa patient may be subjected to ‘compulsory treatment.’ We agree with Rathner (1998) that a patient cannot be coerced into treatment for her anorexia nervosa illness. But we differ in suggesting that she can be coerced into accepting the physical intervention necessary to save her life. An analogy might be the right to intervene to empty the contents of the stomach of a patient who has attempted suicide by ingesting a lethal dose of medication. One rationale for saying that such intervention is warranted is that it is necessary to preserve a set of ‘vital goals,’ which Tengland (2001, p. 98) contends can be ‘reduced to survival.’ As he goes on to say, ‘To survive all people need to have, at least, nourishment, shelter and some human contact,’ a minimal set of values that he then expands to include some more complex activities, which constitute a ‘minimally decent living’ such as the ability to earn income and take care of oneself. Perhaps that is precisely what lies at the core of a delineation of the concept of ‘clinical competence.’
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Cases Re DM 2002. Re DM. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 22 February 2002 (Newby & Wood, McSherry dissenting). Re EC 2001. Re EC. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 17 July 2001 (Meadows, Newby & Gidley). Re EC 2001. Re EC. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 5 June 2001 (Hopkins, Mead & Lush). Re EF 1996. In the review of EF an Involuntary Patient at Royal Melbourne Hospital (1996) 2 MHRBD (Vic) 346.
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Re KJ 2001. Re KJ. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 14 August 2001 (Meadows, Gallois & Gidley). Re MR#1 2000. Re MR#1. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 16 May 2000 (Lush, Fowler & Barlow). Re MR#2 2000. Re MR#2. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 18 July 2000 (Hopkins, McShane & Mellsop). Re SF 1989. In the appeal of SF an Involuntary Patient at Royal Park Hospital (1987 – 1991) Decisions of the Mental Health Review Board Victoria, 137 (12 January 1989, Rees, Barlow & McConnell). Re SJ 2001. Re SJ. Unreported Statement of Reasons of the Victorian Mental Health Review Board, 4 December 2001 (Good, Lush & Gardiner).