Weight restoration and psychological treatment are the two main types of treatment methods currently used, with current consensus that each is complementary and essential for recovery.

It is a characteristic of anorexia nervosa that patients frequently refuse to engage with treatment, in spite of danger to health and life. This is so characteristic of the disorder that it is described in the DSM-IV, immediately following the list of criteria given above, as follows: “The individual is often brought to professional attention by family members after marked weight loss (or failure to make expected weight gains) has occurred. If individuals seek help on their own, it is usually because of their subjective distress over the somatic and psychological sequelae of starvation. It is rare for an individual with Anorexia Nervosa to complain of weight loss per se. Individuals with Anorexia Nervosa frequently lack insight into, or have considerable denial of, the problem and may be unreliable historians. It is therefore often necessary to obtain information from parents or other outside sources to evaluate the degree of weight loss and other features of the illness.” (American Psychiatric Association, 2000). Treatment is sometimes given compulsorily, although there is much variation in its use (The Royal College of Psychiatrists, 1992). Competence to make treatment decisions is an important issue to consider when the patient is at risk and compulsory treatment is being contemplated, but there is very little research to help in the understanding of this area in anorexia nervosa.

In this paper, we will describe a research study which was conducted using the MacCAT-T standardised test of competence and qualitative in-depth interviews with 10 young women with anorexia nervosa, and qualitative in-depth interviews with some of their mothers. The results of the MacCAT-T test will be considered, along with the participants’ views on two main themes: difficulties in thinking and values. On the issues of thinking and values alone, the descriptions of the problems in anorexia nervosa present a challenge to the current conception of competence. This current concept is largely based on understanding and reasoning and is well captured in by the MacCAT-T test, the gold standard for assessment of competence in the psychiatric setting. The results of the study show that anorexia nervosa can have complex and variable effects on concentration, beliefs, and thought processing, without affecting their ability to perform well on the MacCAT-T test of competence. At the same time, participants also report alterations of values, devaluation of other aspects of life, unusual values, and integration of anorexia nervosa into personal identity.

There is a paucity of research into the efficacy of compulsory treatment, and no controlled trials. Outcome studies, however, suggest that the long-term prognosis following compulsory treatment is poor (Ramsay et al., 1999). But even if the efficacy of compulsory treatment is demonstrated, there remains the ethical issue as to whether or in what circumstances it is justifiable to impose compulsory treatment for patients with anorexia nervosa.

The treatment of anorexia nervosa often involves implementing a re-feeding programme that may require the use of strict supervision, enforcement of prescribed dietary plans, prevention of exercising or purging, and naso-gastric or gastrostomy tube feeding. All these measures restrict freedom and can be experienced as intrusive and coercive by the patients, their families, and the clinical staff. Those involved can, for these reasons, feel concern about imposing treatment irrespective of whether they believe them to be effective (Beumont & Vandereycken, 1998).

There have been some empirical studies of capacity and competence in psychiatric patients, but these have not included patients with anorexia nervosa (Billick et al., 1998; Grisso & Appelbaum, 1995; Grisso et al., 1997; Grisso et al., 1995; Moser et al., 2002). These studies have used predetermined definitions of competence, adhering closely to the concept of competence based on elements of Understanding, Appreciation, Reasoning, and Expressing Choice (Appelbaum, 1998; Grisso & Appelbaum, 1998b). There are no studies reported, to our knowledge, in which patients have been asked how they have made treatment decisions, or in which the elements that may be relevant to competence have been explored.

A qualitative methodology using grounded theory (Glaser & Strauss, 1967), modified to accommodate the use of an ethical analysis of the transcripts, was used to analyse the interviews. The interviews were independently coded for content by J.T. and A.S. Coding was pooled and analysis trees were constructed. Quotations were chosen to illustrate themes arising from the analysis.

All the young women were tested using the MacCAT-T test of competence (Grisso & Appelbaum, 1998a). This is a formalised, structured interviewer-administered test of competence that has been validated in some types of psychiatric disorder. The MacCAT-T test is a widely accepted clinical tool for determining competence and closely reflects the common law criteria for capacity (Appelbaum, 1998), with the addition of a dimension of appreciation of the illness. This is considered the current gold standard for formal assessment of competence in clinical psychiatry (Breden & Vollmann, 2004).

The participants with anorexia nervosa scored well on the MacCAT-T test of competence, exhibiting excellent understanding, reasoning and ability to express choice, with generally high scores in each category. Their scores are shown in Table 1. The scores of this participant group were comparable with the normal control groups used by Grisso and Appelbaum in their studies (Grisso & Appelbaum, 1995; Grisso & Appelbaum, 1998a; Grisso et al., 1995). However, two participants did not show full appreciation that they had the disorder. One of these participants agreed with the facts of her condition, but felt ambivalent about whether she had a disorder. The other was more fixed in her rejection of her diagnosis, with firm beliefs that she was too fat, despite the knowledge of her low weight. In accordance with the MacCAT-T, where values are not considered, only the second participant was judged to have questionable global competence, and she was the only person in the group not to unequivocally pass the MacCAT-T.

Due to the size of this study, there has been no attempt to include males in this study, although they do account for up to ten percent of clinical cases (Royal College of Psychiatrists, 1992). It was also not considered feasible in a small study to selectively recruit patients from ethnic minorities, and as a result the study sample, although not by design, consisted entirely of English speaking, British families of white European ethnic origin.

One important aspect of both English and US law is that a decision, however foolish it appears to others, is not by itself evidence of lack of capacity ⁵. In order for a person to be judged to lack capacity he must fail in at least one of the components outlined above, and all these components relate not to the final decision itself but to the way in which the decision was reached. In other words, in order to judge that a patient lacks the capacity to make a particular decision (such as refusing beneficial treatment) it is necessary to know something about how he made the decision – what his reasoning process was. It is therefore strange, at least at first sight, that in one important case (Re T ⁴) the judge said that patients are entitled to refuse treatment even if the decision is neither sensible, rational, nor well-considered, and even if it is made for unknown reasons or for no reason at all. Without knowing the reasons why the patient is refusing beneficial treatment how can doctors judge whether or not the patient has the capacity to refuse? Freedman has argued that the autonomous person is entitled to be foolish in his decisions (Freedman, 1981). The judge in the case of Re T is upholding respect for the autonomy of a competent person by allowing him not only to make his own decisions but also to keep any reasoning to himself. Such a position is tenable as long as there is no doubt about the competence of the patient. But as soon as there is any doubt as to whether the patient who is refusing beneficial treatment is competent to do so then an assessment of competence is needed and this will require an assessment of the reasons why the patient is refusing. Questioning the competence of a person to refuse treatment, therefore, has the consequence that the person may need to be explicit about his reasoning in order for his competence to be assessed. Questioning a person’s competence has a second possible consequence: that the person will be found to fail the test of competence. It is likely that some of those for whom the question of competence is not raised would fail the competence test were they subjected to it. In English law a minor under the age of 16 years is presumed not competent to consent to, or refuse, treatment unless there is convincing evidence to the contrary. Thus for a minor under 16 years old to be considered to be competent an assessment would need to be carried out. The presumption for those over 16 years is that they are competent. No assessment is required unless there is some cause to doubt the person’s competence. This difference in presumption can result in two people who are, in fact, identical with regard to level of competence being treated differently depending on whether they are under or over 16 years. The person under 16 may be assessed for competence (since the presumption is of incompetence) and fail the test; whereas the person over 16 years may not be assessed (since the presumption is competence) and therefore be regarded as competent (Devereux et al., 1993). Those with mental disorder might also be discriminated against for similar reasons.

The extent of this problem depends to a considerable degree on the threshold used for incompetence. There is a serious danger that our growing understanding of the increasing number of factors involved in competence may drive us into developing ever higher standards of competence. Standards should not, in our opinion, be set at a level that would render ordinary adults incompetent. It is only in special, and rather rare, circumstances that adults should be found incompetent, otherwise the concept would be being used in a way that seriously interferes with individual autonomy and freedom.

The key aspect of appreciation is that the patient not only understands the relevant facts but also ‘appreciates’ that those facts apply to her. Thus a patient who understands that she is suffering from gangrene of the foot, and understands further that without surgical removal of the foot such gangrene will, with a high degree of probability, lead to the patient’s death, might nevertheless fail to appreciate that all these facts apply to her, and that therefore she is likely to die without surgery. This concept of appreciation, like the other aspects of the legal concept of capacity, is essentially an intellectual component. It is close to the criterion used in ReC of the ‘ability to believe’ the relevant facts. Grisso and Appelbaum, however, in their further analysis of the concept of appreciation include aspects that go beyond the facts and understanding relevant to the specific decision and include the wider belief systems of the patient. Grisso and Applebaum provide three criteria in judging whether a patient fails the appreciation test, and therefore lacks capacity. First, the patient’s belief must be substantially irrational, unrealistic or a considerable distortion of reality. Second, the belief must be the consequence of impaired cognition or affect. Third, the belief must be relevant to the treatment decision (Grisso & Appelbaum, 1998c).

Consider a person with moderately severe depression who refuses help because of a belief that she is useless and not worth helping. Such a person might pass the Re C test of competence. She might understand the key facts; believe them; and weigh them to come to a decision. Her decision to refuse treatment is based not on any factual error or intellectual failing but on the low value that she puts on herself. It might be argued that she is unable to properly weigh up the relevant facts because of this low self worth which is itself a result of the depression. But we believe that this is somewhat of a distortion of the Re C criteria: the depression does not result in an inability to weigh up the issues and come to a decision. It is rather that the depression affects the values which are being used in weighing up.

Grisso and Appelbaum’s appreciation criterion provides a way of finding this patient incompetent. It could plausibly be argued that she has a belief (that she is worthless) that is a considerable distortion of reality, it is caused by impaired affect (her depression), and this belief results in her decision (to refuse treatment). There is a problem even with this analysis: it is not clear that the belief that one is worthless is a ‘distortion of reality’. Such a belief is essentially a value, not a false view of reality.

Buchanan and Brock use a notion of competence that is broader than that of Grisso and Applebaum. They suggest that, in addition to abilities to understand, communicate, reason, and deliberate, a competent decision-maker also requires a set of values or conceptions of the good which is at least minimally consistent, stable, and affirmed as her own (Buchanan & Brock, 1989). This analysis introduces two important concepts additional to the legal analyses: values, and stability of views.

Charland goes further. He highlights the importance of values in decision making and embraces the possibility that a person lacks competence because his values are unreasonable, even if his decisions are intellectually coherent with his values (Charland, 2001). Charland’s approach derives from his interest in the role of values in rationality. He believes that in understanding whether a person is competent or not we may need to know a great deal about how they come to make their decision including the ‘internal rationality’ of the decisions.

‘Internal rationality’ is achieved when a putative decision (a) coheres with an individual’s enduring aims and values; (b) is justified in the light of these values; and (c) the proposed justification is deemed appropriate by the third party responsible for assessing competence. By asking the question ‘Why?’ with regard to the decision patients are making or would make, Charland suggests that we can uncover the value systems that are underpinning or driving the reasoning that leads to these decisions, and thereby be able to evaluate these value systems for their coherence, justification, and reasonableness, and the way they drive the reasoning leading to the decision. This approach is based on what Freedman calls ‘recognisable reasons’ which are acceptable reasons constituting premises that are strong enough to lead to a conclusion; and that conclusions in turn follow from the premises in a way that satisfactorily explains the treatment decision (Freedman, 1981).

Difficulties with thinking, however, were not limited to concentration and reasoning. This study found that the patients who talked about difficulties in thinking also performed very well on the MacCAT-T. This is because the MacCAT-T understands reasoning as an essentially cognitive process, reducing it to ‘logical consistency in rational argumentation’ (Breden & Vollmann, 2004). Problems with logical processing as measured using small blocks of factual information by the MacCAT-T were not described by the participants as a major feature of problems in decision-making associated with having anorexia nervosa, although some participants did describe what they called ‘muddled thinking’. ‘Muddled thinking’ as described by the participants appeared to extend beyond this to encompass a greater than usual difficulty in thinking through the meaning or usefulness of actions. This phenomenon of muddled thinking, however, was not described by every participant. Some participants, including mothers who may be viewed as more objective with respect to their daughters’ limitations, expressed the opinion that there was no impairment in the reasoning of anorexia nervosa sufferers, even at low weights.

One finding in this study that is important in considering the question of competence is the ambiguity with which some beliefs were held. The issue of belief or disbelief is not always a straightforward affair. There is a distinction between what might be called ‘factual belief’ and ‘salient belief’. Factual beliefs are those beliefs about objective (medical) facts, for example the effects on health of severe weight loss. Salient beliefs are beliefs about whether the facts apply to oneself. Thus several people in this sample reported believing that severe weight loss is dangerous but not believing that such danger applied to themselves, even though they accepted that they had lost weight. This idea of salient belief is essentially the same as Grisso and Appelbaum’s concept of appreciation that the facts apply to oneself (Grisso & Appelbaum, 1998b). Where such salient false belief is fixed and firmly held it will be picked up by the traditional legal approaches as grounds for considering someone incompetent. A person who was at great danger of serious harm as a result of her low weight but failed to believe this would fail the criterion of believing a key fact or of being able to weigh up the key facts in coming to a decision. But our data suggest that these ‘salient’ beliefs are often held in a more ambiguous way both in the sense that they may be held to be true but only to a degree and in the sense that there is fluctuation in the degree to which they are held to be true. Thus an individual who is seriously underweight may correctly believe that people at her weight are at high risk of serious harm (factual belief) and accept, at least at times, that she may be at risk, but have difficulty in taking such risk seriously when thinking about the need for treatment.

These ambiguities with ‘salient’ belief are rooted in the experience of anorexia nervosa which appears to normalise the experience and perception of extreme weight loss and its accompanying symptoms. This results in giving the dangers of the weight loss relatively little importance in decision-making despite understanding and believing them.

Patients who believe and understand the risks of being severely underweight but nevertheless refuse treatment because they do not take these risks seriously when making their decision could be found incompetent using the usual legal criteria and those incorporated into the MacCAT-T. That is, they might be assessed as incompetent either on the grounds that they do not believe a key fact (that they themselves are a high risk) or that they are not able to weigh up the key facts in coming to a decision. But these grounds find analogies with normal adolescence. One example is that many adolescents are able to accept the dangers involved in speeding, drink and drugs (factual belief) but lack the salient belief that dangerous outcomes could actually occur to them. As a result they choose to engage in risky behaviour as if, but not really because, they believe they are immortal.

This highlights the problem that we mentioned earlier: that criteria for incompetence are in danger of being set at too high a level: i.e. at a level that would, if applied consistently, find too many people incompetent and provide justification for an excessive interference in people’ freedom to make decisions and to act in ways that they choose.

Does Charland and Freedman’s approach provide a way of finding the person with anorexia nervosa incompetent without opening the way to an excessive interference with freedoms? Consider the patients with anorexia nervosa in this study who acknowledged that they were below the population norms in terms of weight and also acknowledged that they may be placing their health at risk, but who explained that they still felt fat, and therefore could not quite believe that they were at risk and needed to have treatment. These participants might quite understandably choose not to have treatment which would make them put on weight. Such patients are likely to pass the first two criteria of Charland’s internal rationality test but fail the third because the mental health professionals and most people in the general public would feel that it is unreasonable to place so high a value on being thin that health and life are placed at risk.

We believe, however, that the data from patients with anorexia nervosa provide grounds for believing that the concept of competence must allow for the possibility that a person can be incompetent, and that overriding treatment refusal is justified, even when she passes those tests of competence that avoid an assessment of the patient’s values (Tan, 2003). The participants in this study reported many instances where problematic decisions were based on values related to the anorexia nervosa. These values included: the paramount importance of being thin even to the extent of preferring to risk death rather than put on weight; a positive value to damaging oneself through starvation as a sign of achievement; a value in being different from other people through extreme thinness; and the sense that the anorexia nervosa is part of one’s identity such that a cure would be tantamount to becoming another person.

One response is to ‘bite the bullet’, maintaining an account of competence that avoids values, and allowing people with anorexia nervosa who are competent on such accounts to refuse treatment even when the result is a high risk of significant harm or death. The alternative response is to develop an account of competence that can include patients’ values whilst avoiding the problems of excessive paternalism and undue interference with individual freedom. An attractive way forward, which has intuitive appeal, is to see those values that are both a result of mental disorder, and that underpin the dangerous decisions (such as refusal of beneficial treatment), as pathological. One implication of their being pathological is that these values do not represent the true or authentic views of the person. In respecting the autonomy of the person it is her ‘authentic’ views that should be respected – that is the views that she would have (or did have) if she did not suffer from the mental disorder. The concept of pathological values, linked to mental disorder, enables such values to be distinguished from the unreasonable, unusual or bizarre values that people are fully entitled to hold, and often do hold, in the course of everyday life.

If we understand him correctly, Charland makes use of the concept of ‘pathological value’ without also relying on the idea of inauthentic value (Charland, 2001). Charland suggests that we should ask, during the assessment of competence, not just about understanding of facts, but also look at reasons and values; as he puts it, ask not just the ‘What?’ questions but also the ‘Why?’ questions. This he feels will elicit an account of values which can then make them available for the consideration with respect to competence. But what would this mean in practice when applied to anorexia nervosa? It may prove difficult for Charland’s proposal to produce responses which enable easy assessment. Unlike psychotic disorders which tend to be associated with apparently bizarre, meaningless or disconnected beliefs, there can be consistency, coherence and organisation within the value and belief systems which underpin the behaviour of patients who suffer from anorexia nervosa. The patient who has anorexia nervosa therefore may be able to give a coherent, consistent answer to the ‘Why?’ question, but still be making decisions based on ‘pathological values’ that arise from the disorder. These pathological values may be organised in a way similar to other, non-pathological value systems that the person may hold. Some of the study participants, for example, explained that they understood the risks that they were running, but that the importance of being thin made the risks relatively unimportant and therefore not sufficiently motivating for them to seek treatment. The broader value systems central to anorexia nervosa are similar to those held by a significant proportion of the general public and therefore do not appear at face value to be unusual or unreasonable. For example many people with anorexia nervosa hold value systems which encompass views such as: ‘body shape is very important’, ‘body shape determines my self-worth’, ‘fatness is bad’, ‘thinness or slimness is good’, ‘fat people are lazy and don’t look after themselves’, ‘it is good to exercise and reduce weight’, and ‘the slimmer I am the more that people will like and admire me’, all of which are prevalent in society and encouraged by the popular media. What is striking in anorexia nervosa is the strength of these values, and the central importance attached to them, often to the severe detriment of other value systems and other aspects of life.

If the judgment that these values are pathological is to be made independently of the concept of mental disorder then it will be very difficult to see how they are different in principle from many other examples in ordinary life, for example a dedicated surgeon who neglects his social life, family life and hobbies in the practice of his career; or the athlete whose diet, daily routine and physical activity are all completely dictated by the need to maximise his performance at his sport? It is important that we should not become too oppressive in our assessment of other people’s values, just because they deviate from the norm.

One possible way in which we may be able to draw a distinction between the values seen in anorexia nervosa and these examples from everyday life is to define ‘pathological values’ as values caused by mental disorder. If a value or value system can be determined to arise from a mental disorder then it is ‘pathological’. If it is pathological and these pathological values are determinative of particular decisions then such decisions are not competent. And if such decisions would lead to significant risk of harm then it is legitimate to override them in the interests of the patient.

This determination may not be possible in many cases, but may be feasible in others. The method of tracking changes of values back to anorexia nervosa is particularly well illustrated by values concerning fatness. Fatness was considered by the study participants to have many specific meanings which rendered it a highly undesirable state. This was in turn associated with thinness being viewed as of paramount importance by many participants. These value systems about fatness and thinness are fully consistent with the intrusive fear or dread of fatness, the core and sole psychological criterion of anorexia nervosa, and are highly familiar to professionals who work with patients suffering from anorexia nervosa. It is quite likely then that these specific sort of values are ‘pathological values’ if they are found in a patient who has anorexia nervosa.

There would be even stronger reason for considering that the values are ‘pathological’ if there were evidence that the person did not hold these values before suffering from the anorexia nervosa; or that these values disappeared when the person no longer suffered from anorexia nervosa; or if the strength with which these values are held fluctuates with fluctuation in the severity of the anorexia nervosa. Several of the participants in this study viewed some of their values with regard to the importance of thinness as ludicrous once they had recovered from severe anorexia nervosa.

From a theoretical point of view it is insufficient, we believe, to base incompetence solely on the fact that a value that plays a key role in the decision is caused by, or part of, a mental disorder. The further concept of authentic value is, we believe, needed. Consider a person, without mental disorder, who at one time holds one value and at another time a different value. At the time of holding it, each value is authentic to the person, and we would not normally consider it right to override a decision made at one time on the grounds that the person may come to hold different values which would alter that decision. As long as there is at least a basic stability of values (for example the person’s values do not fluctuate rapidly) then the requirement to respect the person’s autonomy would normally mean respecting their current informed decision based on their current values. The justification therefore for overriding a current decision that results from values related to a mental disorder must be that the decision is not authentic (because it results from a mental disorder).

Some of the reasons why people with anorexia nervosa refuse treatment are not attributable to pathological values. Despite causing much suffering, anorexia nervosa was viewed by some participants as having advantages, or had come to serve functions which were difficult to give up. This has been recognised in more recent treatment approaches by mental health professionals, who now use strategies such as motivational interviewing techniques to help ambivalent patients persuade themselves that the advantages of recovery outweigh the disadvantages (Treasure & Ward, 1997; Vitousek et al., 1998). From the point of view of competence, it is not clear that the positive functions of anorexia nervosa are obvious pathological values in themselves.

On the issues of thinking and values alone, anorexia nervosa presents a considerable challenge to the current conception of competence, which is largely based on understanding and reasoning. The results of the study show that anorexia nervosa can have complex and variable effects on concentration, but also beliefs and thought processing in ways that are not detected by the MacCAT-T test of competence. At the same time, patients also report alterations of values, ranging from the typical values attached to fatness, to much broader changes in values such as devaluation of other aspects of life, unusual values, and integration of anorexia nervosa into personal identity. These are complex issues which do not fit well into the current conceptions of competence either in law or ethical literature, but there are promising avenues for their exploration, for example by considering values and tracing ‘pathological values’, and by examining the nature of belief further by making distinctions between ‘factual belief’ and ‘salient belief’.