With regard to the ethics of compulsion, the central plank of moral justification of overriding treatment refusal in eating disorders is that of decisional capacity. Turning Dawson and Szmukler’s (2006) argument around, we suggest it would indeed be discriminatory to treat mental health patients differently with regard to the need to consent to treatment—unless we can demonstrate that mental disorders themselves confer some particular problems with decision-making that current conceptions of capacity, whether in law or ethics, fail to capture. It is likely that lawmakers, clinicians, families and indeed patients themselves can often sense these difficulties, because there is a societal consensus across the world that compulsory treatment is needed in at least some cases of mental disorder.

Research has shown that patients with anorexia nervosa, both legal minors and adults, can indeed be impaired in their ability to make decisions with respect to the treatment of their own eating disorder as opposed to decisions about other areas of life or indeed treatment of other people who have eating disorders, through a range of mechanisms unrelated to intellectual functioning. Because these difficulties are subtle and not usually centred around faculties such as understanding and retention of facts nor of ability to reason, they can be easily missed in standard capacity assessments (Tan 2012; Tan et al. 2003b). Indeed, the conceptualisations and assessment of capacity may be less straightforward than it may first appear (Charland 2011).

The difficulties in decision-making in anorexia nervosa can arise from shifts in value systems so that losing weight is valued far higher than other priorities in life, including death (Tan et al. 2006). There could be strong identification with the disorder so that it is experienced as part of the self rather than a disorder to be treated and it also becomes difficult to imagine or wish for recovery (Fairburn et al. 1999; Hope et al. 2011, 2013; Rich 2006; Tan et al. 2003c). There may be an inherent struggle for control over the self, so that allowing others to take control, even for beneficent reasons that the patient may agree with, becomes a battle (Fairburn et al. 1999; Tan et al. 2003a, 2010). There may be difficulties in making or executing specific decisions such as a decision to eat and a difficulty in appreciating the seriousness of the disorder especially as there is a mismatch between the objective facts and perception of themselves as seriously ill (Tan 2012; Tan et al. 2006).

Anorexia nervosa is a philosophically fascinating disorder because it incorporates a particular value or an overly strong value, as one of its criteria—in other words, a pathological, or pathologically strong, value (Tan et al. 2006). The legal and standard ethical understandings of capacity studiously avoid any mention of values. This is perfectly understandable particularly in the light of the history of psychiatry as it is crucial that definitions are not open to abuse by majorities who may wish to condemn those with minority or alternative value systems as somehow incapacitated. Yet this avoidance misses the point for disorders like anorexia nervosa where a strongly held value is core to the disorder itself. A typical statement of those very severely ill is “Yes, I know I can die if I lose more weight and I don’t want to die, but I’d rather be dead than gain weight”. These patients may have full understanding and the ability to compute decisional options given their value systems, but it is the value put into the decisional process that losing weight is more important than life itself that leads to a perfectly logical but chilling decision driven by the mental disorder (Tan et al. 2003c).

A different approach is taken by Charland et al. (2013), who suggest that anorexia nervosa is a “passion” as conceptualised by Ribot. This means that it operates through its impact on emotion and is experienced as a motivation and driving force, rather than as an unwanted disorder. This is perfectly consistent with the diagnostic criteria of eating disorders which stress the dread of putting on weight (World Health Organization 1992) and a “pathological fear of becoming fat” (American Psychiatric Association 2013) (our italics). This understanding can be helpful in freeing clinicians from the conundrum of why perfectly intelligent patients seem to be hell-bent on self-destruction—it is important to understand that most important decisions are not made on the basis of logic or reason alone, but are also driven by passions deeply felt and not amenable to reason. Examples of such passions driving nonlogical decisions which we consider understandable or even laudable are getting married for love or laying down one’s life for freedom or country.

Another similar approach is to view resistance to offers of treatment from the point of view of whether patients possess capacity to make treatment decisions and to try to understand what the issues are regarding the struggle for control. Eating disorders are often, though not universally, viewed by many sufferers as an (vain and ultimately self-defeating) attempt to maintain control of their lives, their circumstances and their bodies. When this is the case, attempts by families or clinicians to wrest control from these people in order to help them to recover are fiercely resisted and result in escalating battles for control (Beumont and Vandereycken 1998; Tan et al. 2003a; Vandereycken 1993).

Although we are discussing capacity in depth, it is important to emphasise that capacity is not an all-or-nothing issue. Patients who have capacity should not be forced to make decisions on their own and deprived of support if they need it; neither should patients who lack capacity in any way be forced to accept others making decisions paternalistically for them. The Mental Capacity Act 2005 for England and Wales puts it very well when it emphasises the principle that people, even when they lack capacity, should always have their wishes heard and considered and should, where possible, be supported in a way that would maximise their decisional capacity. To return to the subject of decisional styles, the Mental Capacity Act 2005 stresses that it is possible that someone who is somewhat impaired in decisional capacity may find it helpful to use the support of other people and their advice to make decisions which they can own jointly with others, rather than having to assume the full weight of responsibility for their own decisions or having decisions made for them.

There is a summary page outlining a suggested format for a holistic assessment of decisional capacity in eating disorders at the end of this chapter.

In Helen’s case, as in many cases, Helen was admitted to hospital as a “voluntary” patient. What was clear, however, was that she only did so because she was given a choice of deciding to go to hospital or being assessed for compulsory admission, which she feared even more because of its stigma and potential impact on her future career. This use of restricted choice, unpalatable consequences of non-compliance or ultimatums to elicit the desired behaviour is called “leverage”. Mental health patients with chronic disorders such as psychosis in the USA report high usage of leverage to ensure compliance with monitoring (Monahan et al. 2005). Interestingly, some of these patients approve of leverage in hindsight because it had the desired result of helping them to accept treatment which they were resisting at the time; no one expressed the view that compulsory treatment should have been used instead of leverage, which would be the legal view of best practice (Tan et al. 2003a, 2010).

Leverage can be exercised in a multitude of ways ranging from persuasion through “interpersonal leverage”, inducements and threats of coercion (Szmukler and Appelbaum 2008). As with compulsion, leverage is a spectrum and is indeed part of normal parenting. Indeed, it is an expectation that children and adolescents have to accept limits and boundaries in their own interests, with a tension between their protection and respect for their rights. This is enshrined in the United Nations Convention on the Rights of the Child (UNCRC) 1991. Article 3 states, “In all actions concerning children the best interests of the child shall be a primary consideration”, whilst Article 5 states: “The responsibilities, rights and duties of parents to provide, in a manner consistent with the evolving capacities of the child, appropriate direction and guidance in the exercise by the child of their rights shall be respected.”

For patients of all ages, clinicians have a similar set of obligations with inbuilt tensions, as articulated in the Geneva Declaration of the World Medical Association (2013), which includes the following: “The health of my patient will be my first consideration”; “I will maintain the utmost respect for human life”; and “I will not use my medical knowledge to violate human rights and civil liberties, even under threat”.

With regard to eating disorders and other mental disorders, families typically put pressure on patients, whether adolescent or adult, to accept treatment, using various threats or promises. Other people in authority often exert leverage—sporting clubs or organisations or schools may also threaten to disallow continued training or competition or attendance if patients do not accept treatment, as happens to Helen. Eating disorder clinicians typically exert leverage by telling patients that they need to agree to treatment at home or they will be admitted to hospital or that they need to agree to inpatient admission or they will be assessed for the use of mental health legislation to admit them, so they would be admitted anyway. Clinicians (and social workers) may also exert leverage on families of adolescent patients who are not engaging with treatment or patients who are parents who are causing concern by telling them that they need to accept assessment and treatment or else they might be referred for child welfare services.

Clinicians tend to be divided about the moral status of leverage. Some argue that this is often a statement of reality rather than a means of coercion, that if patients refuse treatment in a deteriorating situation, it is likely that they will wind up having the treatment anyway on compulsory orders, so they should be fully informed of this and make their choices on the basis of the likely consequences of their actions. Others feel that the use of leverage is unacceptable and that patients should not be “threatened” when offered treatment, particularly as this would jeopardise therapeutic relationships, and that unwilling patients will not be able to engage with therapeutic interventions.

In practice the point at which clinicians move from a libertarian position (upholding a patient’s self-determination to refuse) to a utilitarian or paternalistic (enforcing treatment) stance hinges on medical risk. However, the determination of when a patient is “ill enough” to warrant such treatment is usually a contentious issue involving the balancing of risk. Consideration of the effect of treatment delay on prognosis further complicates this dilemma. In other words, very often the question may not be “whether”, as in whether we let people refuse treatment or not, but “when”, as in at what point we do step in and override treatment refusal. A further, perhaps more cynical, question, may be “who”, as in whether particular professionals are willing to do the deed within their service or prefer to leave the overriding of treatment refusal to others.

One thing to consider when thinking about consent is the style of decision-making that patients use. Some patients prefer and indeed require that they make decisions as individuals, but others prefer to involve their families and can do so to the extent of needing families to help them make decisions (Stewart and Tan 2013). Many factors affect which style is preferred or needed. These include person-related factors such as age, maturity and family and cultural styles but also decision-related factors such as the gravity and urgency of the decision and the severity of illness. For instance, a person may normally be highly independent in terms of seeking medical help and making treatment decisions, but when physically debilitated and at serious risk of death, they may wish to have other family members around them agreeing to the decision or helping to guide them about what the best course is. In such circumstances, they may also depend more heavily on the opinion of the doctors as to what the best course of action is. Clinicians should also bear cultural contexts in mind, as families may have a greater tendency to make decisions together in some cultures or subcultures than others, and the individual autonomy model assumed by law may be a poor fit in some circumstances (Moazam 2000; Tan and Chin 2011; Tan et al. 2013).

This certainly happens in severe eating disorders, where patients often find a major discrepancy between their own perception of the severity and risk of their condition and the objective facts as presented to them (Tan et al. 2006). In such situations, especially when their eating disorder is causing them to wish to refuse treatment, patients may find that they need to trust others to help them make a more balanced judgement or need (or indeed wish) others to persuade them to agree to treatment that they could not agree to if left to make the decision alone. In some cases, patients find that they cannot bring themselves to make the decision to accept treatment, but are relieved if others make the decisions on their behalves, because it lets them off the hook with respect to the punishment anorexia nervosa inflicts on them if they “betray” it.

Others taking responsibility for the decision may ultimately be preferable. In a similar way, for health professionals, the “higher power” provided by terms of mental health legislation can be helpful in preserving the therapeutic relationship when it could be argued to be negligent to not enforce treatment. It should also be remembered that eating disorders can also cause developmental delays in terms of emotional maturity and life experience of independence, so many young adults may be relatively immature with respect to their peers and may be more similar to adolescents in some of their decisional capabilities.

A schematic conceptualisation of the different factors which may affect which style of decision-making is appropriate to a patient is provided in Fig. 6.1. This schematic may be helpful to professionals and patients in discussing what style of decision-making to adopt.

When she reached 18 years of age and became an adult, the adolescent mental health services discharged Helen. She appeared relatively well, but the adolescent unit and her parents had some concerns about her continuing ambivalence towards recovery. The adolescent unit convinced Helen to attend an assessment at the adult eating disorder service, largely through putting pressure on her that they needed to ensure she was safe before they discharged her from their care. Helen attended her assessment with adult services accompanied by her parents. She then went to one or two follow-up appointments brought by her parents but seen alone. In these appointments, she showed a lack of interest in recovery and stated that she was perfectly fine as she was. Her obvious reluctance to engage, coupled with her relatively good weight, meant that the adult service felt that they could not do any meaningful work with her as an adult for her eating disorder. Coupled with the fact that the service was overwhelmed with demand for their time, the team decided to discharge her from their care with an open invitation to contact them if she wished to have help in the future.

Helen immediately celebrated her “freedom” from psychiatric services by enrolling in a distant prestigious university and going off to study Medicine, which also meant changing general practitioners (family physicians) from the one her whole family used to one near the university. At the same time, Helen joined the university running club and took up running again, becoming successful at the intercollegiate level.

Within a few months of living away from her family and struggling to adjust to a new and demanding environment as well as trying to balance studies with training, Helen had a relapse and again was rapidly losing weight and becoming more withdrawn and depressed. Her parents were distraught and her mother went to the adolescent mental health services, her general practitioner and even the local and university town adult eating disorder services about her concerns, but no one was able to help or react to her concerns because Helen was an adult and was not seeking help for herself. The university town adult eating disorder services told Helen’s mother they would offer an assessment, but if Helen did not attend, then it would be difficult to do anything. They suggested that her family doctor would need to be more proactive.

Finally, Helen fainted in class and her college ordered her to seek medical help as a condition of continuing with her studies. She was admitted to a medical ward because she had low blood pressure and abnormal electrolytes.

There is an abrupt transition from childhood to adulthood in the law. Whereas the law places on parents and services a duty to protect legal minors and enables (and perhaps requires) parents to continue to be involved in treatment for their children even as the children mature and become more able to make their own decisions, when children become adults, this abruptly ceases. For conditions such as eating disorders, where developmental regression is common and parental involvement is central to treatment in child and adolescent services, the transition to adult services which focus on treating the individual adult can be a shock to both parents and offspring. Although there have been great improvements in transition between adolescent and adult services and there is widespread recognition of the value of carer involvement in the treatment of adults with eating disorders (Treasure et al. 2005, 2007), the fact remains that once they become adults, the legal situation changes and parents no longer have legal authority or duties towards their offspring. At this point, these offspring become the central focus of the treatment services and the main decision-makers, including about whether parents can even be told about or involved in their treatment. Rules about confidentiality often stymie and frustrate concerned parents who may attempt to seek help for their adult children. This can be compounded by family doctors and adult mental health services which do not already know the patient, for instance, if he or she has moved into the area.

The law regarding adult consent can often fail to fit the needs of young adult eating disorder patients, who may still be quite dependent on their parents, and may also have failed to develop the independent skills for living which their peers would have done, due to being ill and missing opportunities for social and emotional growth. However, clinicians can also be overly rigid in their interpretation or application of the law; for instance, despite laws on confidentiality preventing discussion of patients with others without their consent, parents and other concerned family members have every right to provide information to clinicians about their concerns—this is called third-party information. There is also no legal or ethical reason that clinicians cannot act to investigate concerns based on third-party information; the problem is often one of culture of practice rather than legal limitations.

The assurance of confidentiality is inarguably of paramount importance in healthcare as it allows for the development of trusting relationships between patient and health professional (General Medical Council 2009). However, the law clearly states that if the risk to a patient/other of not disclosing information outweighs this, then it is a professional’s duty to do so. Sometimes, simply explaining this to a patient and therefore clearly stating the therapeutic bounds of confidentiality can enable a patient to agree to some important disclosures in the interests of their safety. The ability to be honest and justify the disclosure is key if trust is to be preserved within that therapeutic relationship. This applies to children and adolescents as much as adults, with the difference that the thresholds for disclosure and sharing information may be different due to additional considerations such as protection of child welfare and parents’ needs in order to fulfil their responsibilities.

The adult healthcare system, whether primary care or specialist care, is not well geared for patients who do not present themselves asking for help. General practitioners and other primary care clinicians such as university health services generally do not try to treat patients who are not actively asking for help. It should be pointed out, though, that they do often seek patients out and even try to persuade them to attend in various other contexts, for example, for routine dental checkups, student health assessments, routine vaccinations and cervical smear tests.

Just as parents do not relinquish their concerns and sense of responsibility to help their children simply because they have become adults, so healthcare professionals continue to have a responsibility of care towards their patients. Healthcare allocation issues can come into play when patients transition from one service to another. Many, if not most, healthcare services work beyond capacity and employ different gatekeeping mechanisms to ration services and manage their workload.

In practice, it is the referrers’ responsibility to flag up the urgency of a case and to argue for a patient to be seen within an appropriate time frame. Specialist services do have a responsibility to provide comprehensive liaison to all potential referrers so that patients are managed safely prior to being seen and becoming the responsibility of specialist eating disorder teams. This should include advice as to when to intervene more proactively—ultimately involving assessments for compulsory treatment if necessary—and when concern is voiced by others (such as Helen’s mother) in the absence of clinical information, there should be a low threshold for this.

Due to the lack of comprehensive specialist services in many areas (Royal College of Psychiatrists 2012), there is a sad possibility that patients may be obliged to become ill enough to be seen by specialist services, and if they are particularly ill, they can then bypass the rest of the waiting list to receive services immediately. In some cases, this may even be necessary to bypass lack of consent—if patients like Helen are refusing to seek treatment, then sometimes a crisis in health or function may be needed to obtain their consent for treatment or, in the worst cases, enable emergency treatment to be provided in the absence of ability to consent. This raises the issue of whether clinical thresholds for treatment by specialist services are appropriate. It also raises ethical issues of justice regarding the general lack of timely and appropriate services for mild or moderate eating disorders. For patients who struggle or simply fail to engage but are not, or not yet, severely ill, there is a need for alternative support outside of or as part of step-down from specialist eating disorder services. For example, user-led services that are integrated into services that provide support for social, occupational, housing and financial wellbeing would be ideal for enhancing engagement of more resistant patients and for sharing responsibility and expertise.

However, in the ward, Helen would not eat the food, claiming it was not her preferred food and was unpalatable in any event. After several days on an IV drip, a hospital dietician was called in who suggested nasogastric feeding. Helen refused this and the nursing team refused to insert this, claiming that it was medically unsafe to do this for an unwilling patient. The physician agreed with this refusal, claiming that the medical ward was an unsafe place for Helen, that nurses had neither time nor skills to supervise her meals and that furthermore she was upsetting the patients around her who did not like to see her emaciated form and refusal of food, which compromised their own treatment and recovery.

At the same time, when asked for help, the neighbouring psychiatric ward claimed that their ward had too many acutely psychotic patients and had no medically trained nurses for them to be able to safely nurse a frail-eating disordered patient. The mental health ward also declined to look after any drips or nasogastric tubes which they argued was outside their expertise. There were no local eating disorder inpatient facilities which could take Helen. In the end, after several urgent telephone calls from the ward, the dietitian arranged for the local eating disorder team to assess Helen, but the ward physician discharged Helen as soon her electrolytes normalised and without consulting the eating disorder team.

Once discharged, Helen went back to her studies and training, and the eating disorder team struggled to engage with her. Helen never refused to see them but always rang and cancelled at short notice, giving a range of plausible reasons. She also refused them permission to speak to her college, her parents, her previous treating team or her previous general practitioner about her.

It is not uncommon for healthcare services to struggle to provide appropriate care for severely ill patients with eating disorders, because their healthcare needs cross boundaries much more than most other psychiatric patients. Unlike most psychiatric patients, they often require acute medical care such as cardiac monitoring, intravenous infusions and enteral nutrition. At the same time, their disorder can mean that they are difficult for ward staff unused to mentally disordered patients with challenging behaviours to manage on medical wards. Conversely, mental health units unused to managing eating disordered patients may be unconfident in dealing with their often precarious physical condition. This suggests that specialist eating disorder inpatient units are the solution if this facility is available. However, these can also be unhealthy environments for eating disordered patients who can engage in competition and learn new ways to perpetuate their eating disorders or evade professional scrutiny.

In many hospital systems, mental health and acute medical staff do not often work together, and problems with communication and clashes in culture can ensue. This is ethically problematic as duties of care should cut across boundaries and disciplines such that all healthcare professionals work together for the welfare of their patients (MARSIPAN 2014). Eating disorders can often be highly stigmatising (Zwickert and Rieger 2013). Misperceptions and misunderstandings can lead to negative attitudes and discrimination which then decreases the ability of healthcare staff to empathise with patients, engender feelings of frustration and rejection and have a negative impact on delivery of healthcare and healthcare decisions (Vandereycken 1993). The care and treatment plan approach in England, a version of which has recently become a legal requirement in Wales for all mental health patients in secondary care (Mental Health Measure 2010), attempts to rectify this. If done thoughtfully rather than as a paper exercise, these plans can bring all the relevant professionals together to consider and address all the aspects of needs for individual patients. In the UK, MARSIPAN (“the Management of Really Sick Patients with Anorexia Nervosa”) and Junior MARSIPAN guidelines (MARSIPAN 2014; Junior MARSIPAN 2012) have highlighted this particular issue, and the growing number of multi-professional MARSIPAN groups seeks to bridge this dangerous gap.

Once out of hospital, Helen continued to lose weight and eventually was too tired to train or compete anymore, though she struggled on and continued to attend classes. Her grades were dropping and she was increasingly socially withdrawn. She wore layered clothes and avoided direct contact with her tutors who did not realise the severity of her disorder.

Helen turned to the Internet for support and began frequenting pro-Ana websites and chat rooms. She made friends with an older lady named Clare who lived locally and had suffered from an eating disorder for 20 years, and they began to meet to lend each other mutual support to “live with Ana” and evade the “clutches of the shrinks”. Helen enjoyed this friendship as she felt for the first time that she had a friend who really understood her. She valued the warm acceptance Clare gave her, which she contrasted favourably with her own mother whom she always experienced as an impossible role model and whom she saw as always trying to fix her. With Clare’s friendship, Helen began to feel that she positively valued the identity that “being anorexic” gave her.

Clare was in her 40s and had also been “Ana” since her late teens. Clare was married and her physical condition meant she was not able to work. Clare was also limited in other ways, for example, she was unable to eat in public or with her family and she had rigid and narrow food preferences and rituals, which meant that she had not travelled away from home for over a decade. She had previously had a few years of repeated admissions followed by one compulsory admission lasting two years which had failed to enable her to gain a significant amount of weight. She resisted treatment, both refeeding and psychological interventions, and discharged herself against medical advice when she reached a BMI that could no longer justify her detention under mental health legislation.

Since then, Clare had kept a low body weight of BMI 13 but carefully managed her own physical status in order to avoid further admissions. However, she did vomit and abuse laxatives and needed regular potassium infusions to keep her electrolytes normal, and she also had osteoporosis. Clare hated her physical limitations and felt ashamed of her eating disorder, but at the same time, she felt rather proud of being successful at maintaining her weight at the levels she did and unable to give her eating disorder up. She had been discharged from the eating disorder team to her general practitioner because she was unwilling to engage in treatment that she found intrusive and unhelpful. After a fall in which she fractured her spine, she was again referred to the eating disorder team but she often cancelled appointments, did not attend or always managed to be out whenever staff came for a domiciliary visit.

Anorexia nervosa has a particular problem that it is egosyntonic, that is, sufferers identify with it (Vitousek et al. 1998). There is an underground subculture which promotes support between fellow sufferers to maintain the identity of having anorexia nervosa, which may also be celebrated (Norris et al. 2006). The egosyntonic nature of the disorder, coupled with the fact that many aspects of eating disorders are often functional for the sufferers, means that many people are unwilling to give up the disorder (Serpell et al. 1999). There has been considerable sociological critique of the tyranny of the medical institution which categorises individuals as “patients” and then disempowers them and a further feminist critique of how the mostly male medical fraternity has labelled the mostly female eating disordered sufferers as ill (Giordano 2005; Orbach 2006). Indeed, there is a strong tribal identity amongst those who have eating disorders (usually anorexia nervosa rather than bulimia nervosa), and in specialist inpatient units, a common problem is covert or overt comparisons and competition between sufferers, as well as sufferers teaching each other “tricks” to increase weight loss or to evade the scrutiny of clinicians.

From the legal viewpoint, the key question ultimately goes back to one of capacity. Two recent legal cases in England and Wales, where judges were faced with severely ill patients with anorexia nervosa who were close to death but asking to have their wishes to die respected, hinged on this issue (Re E (Medical Treatment Anorexia) (2012) EWHC 1639 (COP); Re L: NHS Trust v L [2012] EWHC 2741). Both judges found that although both patients clearly understood the risks involved, they did not possess capacity to make decisions about their treatment for anorexia nervosa. The judges then went on to make opposite judgements about whether these patients should have compulsory treatment, based on the evidence provided as to what was in each patient’s best interests. These case judgements concur with research findings that anorexia nervosa, especially severe anorexia nervosa, can indeed have impaired decisional capacity and set important legal precedents concerning this issue.

From the ethical viewpoint, in our view, it is more helpful to ask a broader question—is the disorder affecting the autonomy of the patient, so that they are not freely choosing to keep the disorder? Or are they truly autonomous agents choosing an alternative set of values and an alternative lifestyle with different norms? An important clue is the counterfactual of the libertarian assertion that people should be allowed to refuse treatment and allowed to die. The counterfactual poses the following question: if people with anorexia nervosa who think they choose or feel they wish to keep the disorder did actually try to give it up, could they succeed in doing so? Experience of severely ill patients would suggest that the answer is always “no”.

According to Frankfurt, freedom of the will is the ability to choose which of one’s own first-order desires moves oneself to action (Frankfurt 1971). Most people with bulimia nervosa have a strong dissonance between their first- and second-order desires in a way similar to the drug addict whom Frankfurt described as not being free. The typical bulimia nervosa sufferer has the (first-order) desire to binge and to purge, but a second-order desire not to have the desire to binge or purge. This second-order desire however is unable to override the overwhelming desires to binge or purge. Therefore, Frankfurt would say, bulimia nervosa sufferers are not free. Many anorexia nervosa sufferers are also not free in a similar way. However, we suggest some people who suffer from anorexia nervosa are doubly unfree because they are not even free to be able to wish that they were free of the overwhelming desire to lose weight. This throws into question the assertion that severe eating disorders are a lifestyle choice. Indeed, sufferers spontaneously liken eating disorders to addictions where a person is in the grip of the addiction and is unable to break free.

For those impatient with philosophy, we suggest that the misery, loss of function and impoverished lifestyles experienced by those with a severe disorder, even amongst those most determined to keep their disorder and resist recovery, suggest that this is neither a rational nor reasonable lifestyle. Of course, there is no requirement that our lifestyle choices are either rational or reasonable, and indeed many lifestyle choices are not. The contribution of philosophy here is to suggest the crucial distinction that we would demand when we encounter patients who claim that anorexia nervosa is a lifestyle choice, that people who make irrational or unreasonable “lifestyle” choices are nevertheless free to make the counterfactual choices. In other words, they could have chosen otherwise.

Identity is a thorny issue. Many sufferers, especially those who have been ill a very long time and in particular those who have been ill from early adolescence, cannot recall a normal self free from an eating disorder, so the concept of being recovered may be existentially threatening and involve the reconstruction of a whole new understanding and sense of the self (Hope et al. 2011; Tan et al. 2003c). Understood from a developmental point of view, identity development may have been derailed or changed in trajectory due to the impact and experience of the disorder, and therefore as adults, they may find themselves with no sense of a premorbid adult self to return to. It may be possible to undertake a project of reconstructing the self—sadly, this may be beyond many patients’ imagination and capabilities. It also is not so much an issue about capacity as about whether there can be aspiration and hope for a different way of being. This is where the role of the treating team is vital: in maintaining hope for the hopeless patient and their loved ones and persisting in their interest and empathy for those very patients who least want it.