بی اشتهایی عصبی و هویت شخصی: حساب بیماران و والدین آنها

Anorexia nervosa is a mental disorder that typically affects young women either in adolescence or young adulthood. It occurs disproportionately in females as compared to males and has a higher incidence in westernised countries Hsu, 1996, Tsai, 2000 and Wakeling, 1996. It has been suggested that sociocultural influences, such as the increasing westernisation of cultures and the idealisation of slimness amongst young women, have a role in this. However, the exact role of sociocultural influences, which include country of residence, race, ethnicity, and acculturation in the development of anorexia nervosa as opposed to subclinical eating disturbance and body dissatisfaction, is as yet unclear (Wildes, Emery, & Simons, 2001). Other risk factors for the development of anorexia nervosa are dieting behaviours, a family history of eating disorders, early childhood eating or digestive problems, body dissatisfaction, low self-esteem and a premorbid personality pattern of compliance, perfectionism, and dependence Polivy & Herman, 2002 and Walters & Kendler, 1995. The disorder has the cardinal features of a self-perception of being fat and an intrusive dread of fatness, significant weight loss that is self-induced, and associated endocrine abnormalities (World Health Organization, 1993).

Patients who suffer from anorexia nervosa can place themselves at significant physical and psychological risk through self-starvation, binging, purging, excessive exercise, and deliberate self-harm. Despite the development of various treatment methods, the course of the illness is often chronic with slow recovery. Up to 25% of patients who never achieve a full recovery (Strober, Freeman, & Morrell, 1997). There is also a significant morbidity and mortality associated with the disorder, with some studies giving rates amongst the highest of the psychiatric disorders (Ratnasuriya, Eisler, Szmukler, & Russell, 1991). 2. The research enterprise There have been no studies examining either competence or capacity in patients with anorexia nervosa. Studies of competence and capacity in psychiatric patients have tended to treat the two concepts as equivalent and have focused principally on understanding and reasoning Grisso & Appelbaum, 1991, Grisso & Appelbaum, 1995, Grisso et al., 1995 and Moser et al., 2002. Most of these have employed semiquantitative methodology on the basis that the factors involved in competence are known and measurable, being to all intents and purposes identical to the legal concept of capacity. The study reported in this article was conducted with the intention of exploring the different factors relevant to competence to make treatment decisions in anorexia nervosa, through the mechanism of allowing patients and their families to give accounts of their own experiences and difficulties with this, as opposed to imposing preexisting criteria in attempts to test competence. Due to the preponderance of females with the disorder and the possibility that there would be different issues involved for each gender, the study was limited to female patients. Because the participants were young women, many below the age of legal majority, and the fact that proxy consent for their treatment was often given by parents, it was felt that the views of parents were equally relevant to the analysis in this age group. Further, the involvement of parents helped to counterbalance the internal viewpoint of how the patients suffering from anorexia nervosa felt and perceived things by providing an external viewpoint of the parents' observation of the effect of anorexia nervosa on their daughters. In the analysis, it was not assumed that one account was superior to the other, but each was taken as complementing the other. In order to observe whether these accounts have any relation to the conventional testing of competence, a standardised test developed for psychiatric patients and validated with psychotic patients, the MacCAT-T, was also used. With respect to personal identity and competence, it is generally agreed that when a patient is not competent, then his previous wishes could be relevant, as are appeals to ‘what he would have wanted’. Where the effect of the disorder on the personal identity is an obliteration, obtundation, coarsening, or caricature of the previous personality, as for instance in dementia or chronic schizophrenia, then the issue is relatively less problematic; most people would wish to give precedence to the previous healthy competent personality over the current ill and noncompetent self. The case of anorexia nervosa, however, may present a challenge to this simple view, as anorexia nervosa is not a degenerative disorder and it may also have additional distinctive effects on the identity, as opposed to exaggeration of preexisting traits. This is an area not previously explored from the point of view of the impact of anorexia nervosa on the sense of personal identity with respect to the ability to make treatment decisions. We hypothesised that if anorexia nervosa had significant effects on the patients' sense of self, particularly if it was experienced as a part of the self, then it would certainly affect the ability or willingness of the patients to contemplate accepting treatment. It was further hypothesised that this was likely to occur in a manner distinct from any effects of the disorder on the ability to understand or reason. If anorexia nervosa was experienced as affecting the patients' personal identity, then their treatment decisions made while under its influence would be relevant to the issue of competence to consent to and refuse treatment. It was therefore important to begin the attempt to understand the effects of having anorexia nervosa on the sense of personal identity of patients, particularly young women who may not have completed the developmental task of identity formation prior to developing the disorder.

This article reports a qualitative study of young women with anorexia nervosa and some of their parents. The results suggest that the aspect of anorexia nervosa as part of personal identity is an important one with respect to how the patients themselves view the prospect of treatment for the disorder. The participants' views suggest that anorexia nervosa can change their personality and sense of identity; and that independent of an understanding of the benefits of having treatment and the risks of continuing to have the disorder, the decision to accept treatment can become heavily loaded with the implication of giving up a part of themselves, which can affect their decision. The current conception of capacity, which is based on understanding and reasoning, does not capture these difficulties. Neither do standardised measures such as the MacCAT-T, which closely reflect the legal concept of capacity. This may help to account for some of the difficult situations that can occur in anorexia nervosa, where patients who appear to have capacity nevertheless refuse or resist treatment and apparently prefer to continue to have anorexia nervosa in spite of knowing its disadvantages. We suggest that the issue of personal identity is a factor that should be considered when assessing the competence to consent to, and refuse, treatment in anorexia nervosa.