case study on anorexia nervosa class 12

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Anorexia Nervosa, Case Study

1. The case study. Christine is a sixteen year old girl who has severely restricted her dietary intake. She is currently forty nine kilograms and height 163cm. Her mother says she was 60kgs six months ago.

In form three, at age fifteen, Christine was removed from the public school she was attending and put into a private school, where she was awarded the dux prize. She did not have any friends during this year as she spent all recesses in the library, reporting that ate alone as she ‘had no friends to eat with anyway’.

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Her mother says that she attends roller skating sessions up to five nights a week and believes she does this to lose weight. She is pre-occupied with food and is constantly cooking for the family. She does not sit down with the family to eat, saying that she has eaten enough while cooking. An argument with her parents precipitated the diet as she decided that there was ‘one area of her life that she could control and that was what she ate’.

She has commenced medication for sleep stating that she is unable to sleep after studying till late at night.

She recently took an overdose of sleeping pills and whilst in Emergency Department expressed a desire to die. The family live on a ten acre block and are ten kilometres from town. Her father is an accountant. Her mother is a school teacher and has a diagnosis of bipolar affective disorder.

She says she fights a lot with her mother and does not seem to be able to please her father. Her brother, two years younger, left home to join the navy earlier this year. 2. Provide a summary of the diagnosis and describe the course of the illness.

Wozniak, Rekleiti and Roupa (2012) outline early signs of anorexia nervosa (AN); preoccupation with food, weight and calories; rigidity and rituals around eating, avoidance of family meals, denial of hunger and excessive exercise. As it progresses the patient may seem withdrawn, absent sense of humour, angry and depressed and no longer spending time with friends.

The patient may become very rigid around other things also such as homework as obsessive compulsive behaviours begin to present.

Extreme measures are used to reduce weight; strict dieting, purging or eating fibrous foods, use of laxatives, appetite suppressants or diuretics (Australian and New Zealand clinical practice guidelines, (ANZCPG), 2004). To gain a diagnosis of AN a person has the following; a ‘refusal to maintain a minimal normal body weight (defined as more than 15 per cent below expected body weight), be intensely afraid of gaining weight despite being significantly underweight, have disturbance in perceiving the correct size or shape of their body and (for postmenarchal females), amenorrhoea’ ((Edwards, Munro, Robins, Welch, 2011). . AN usually begins in adolescence, and is more prevalent in women (0. 2-0.

5%) than men (Wozniak, Rekleiti and Roupa, 2012). It has a slightly higher occurrence in socio-economic status (ANZCPG, 2004). It has the highest suicide rate of all mental illness at one and a half times higher than major depressive disorder. Approximately 15% die from the disorder 2/3 from malnutrition, one third suicide (Ommen, Meerwijk, Kars, Ellburg, Meijel, 2009). Although 70% of patients regain weight within 6 months of onset of treatment, 15–25% of these relapse, usually within 2 years (ANZCPG, 2004).

The prognosis is better for patients with a short duration of illness, if treatment does not require hospital admission and it is treated early.

Long term illness can still be treated but with a poorer prognosis. A long duration of illness, vomiting in emaciated patients, coexisting psychiatric illness, disturbed family relationships, serious medical complications and later onset of illness are indicators of a poor outcome (ANZCP, 2004). The psychological impact is immeasurable as formative teenage years are spent in an obsessive eating disordered thinking.

Those who ‘recover’ from AN often retain certain features of atypical eating disorder, eating disorder not otherwise specified (EDNOOS) (ANZCPG, 2004). Surtess (2007) outline physical complications associated with AN which range from dry skin and hair, electrolyte disturbances and cardiac complications, endocrine disorders, suicide or death from starvation, osteoporosis and a possibility of long-term adverse effects through prolonged severe weight loss. Downy hair over the body (lanugo), insomnia and early wakening are also characteristic (Wozniak, Rekleite and Roupa, 2012).

Key elements to recovery include patient oriented recovery, therapeutic relationships, collaboration. Reduce further deterioration and complications of the illness. The patient is admitted to a psychiatric ward when the risk of death either from suicide or physical effects of starvation is high (ASEN, 2002). During treatment, as a patient’s weight increases, anxiety and depression may return, increasing the risk of suicide (Asen, 2002). A comprehensive psychiatric assessment will be carried out including a mental state exam (MSE) and a risk assessment.

Depression is assessed with Hamilton Anxiety and Depression

Rating Scale or Beck as depression and anxiety are associated with AN (ANZCPG, 2004). Medication may be prescribed in the form of antidepressants such as fluoxetine; olanzapine decreases hyperactivity of AN and may reduce overvalued ideas about food, shape and weight (ANZCPG, 2004). The nurse will monitor vital signs, weight and other tests including, blood tests for deficiencies such as anaemia, electrolyte balance and cardiac function with ECG (ANZCPG, 2004). In the first stage of recovery the nurse takes control of the patient, directing and supervising their eating of meals.

Meal times and social activities are opportunities for nurses facilitate the development of social skills with other patients in the ward (Bakker, Meijgel, Bukers, van Ommen, Meerwijk and van Elburg, 2011).

Therapeutic relationship established. Care takes place in an environment of empathy, safety, trust and mutual respect as interpersonal relationships are key to recovery (Tozzi, 2003) and the more differentiated relationships, the better they can manage stress and the social and physical aspects of the disorder (Bakker, et al. , 2011).

The therapeutic relationship is the ideal medium for patients to work through erroneous beliefs about eating and body image. Therapeutic relationships provide a foundation for meeting patient’s goals and facilitating behaviour change (Micevski and McCann, 2005). Nurses gain support from their colleagues through sharing strategies for working with patients, indirectly benefitting the patient nurse relationship (Micevski and McCann, 2005).

This is congruent with a consistent treatment plan, supporting a trusting environment and quality of relationship.

Therapeutic optimism. With therapeutic optimism the nurse adopts a positive attitude towards the patient’s recovery, instilling hope in the patient (Spandler, Secker, Kent, Hacking and Shenton, 2007). ‘For people with mental health problems, hope lies at the heart of the individual’s ability and willingness to take on the challenge of rebuilding and recovery’ (Repper and Perkins, p. 52). The patient feels empowered and valued as she is given information regarding her physical progress, the gaols of treatment are discussed and those of the patient are explored.

A sense of competence and coping ability is regained. Research suggests that art therapy has therapeutic value for people with mental health needs (Spandler, Secker, Kent, Hacking and Shenton, 2009). Patient oriented recovery. The patient’s goals and expectations of recovery are important, rather than a generic health focussed definition. Patients have choices and are supported to create and maintain the kind of life they want that is meaningful, satisfying and purposeful. Health care professionals are courteous and respectful.

National Standards for Mental Health Services, 2010) Family involvement is integral to treatment as parents are taught strategies to help and support their child. The adolescent is more likely to comply when the parents are supportive of and consistent with treatment. The nurse role models strategies for parents to adopt particularly around mealtime activities. It is a difficult role for parents to undertake without support (Bakker et al. , 2011).

Asen (2002) establishes that randomised controlled trials in anorexia nervosa patients demonstrated improved outcomes for adolescent patients.

The study highlights the importance of parents learning to manage eating disorder symptoms early in treatment. 4. Apply the evidence to outline six outcomes which you would expect to see from the nursing care. The patient is beginning to develop normal eating habits and nutritional status is improving.

Menstruation has recommenced. There is no more use of laxatives and other pathological behaviours. Nurses have a structure based and directional interventions where rules around eating are utilised toward improving nutritional status.

Nurses are able to educate parents and provide strategies to parents to help their child (Bakker et al, 2011). Reduce risks of complications developing or further deterioration. A hospital is best able to treat adverse events such as cardiac arrest and other adverse events (Australian Commission on Safety and Quality in Health Care (ACSQH), 2010).

Hospital admission is particularly useful when BMI is reduced to such an extent further medical decline could result in death. Ongoing mental state exams monitor the progress of the patient and medical status is observed through testing and vital signs.

Depression and anxiety are associated with AN and can recur as weight is gained (Micevski and McCann, 2005) and can be monitored on the ward and medication provided as required. A therapeutic relationship is established. Interpersonal relationships are key to recovery (Tozzi, 2003) as the more differentiated relationships they have the better they can manage stress and the social and physical aspects of the disorder (Bakker, 2011). With therapeutic optimism the nurse conveys a positive attitude towards the patient’s recovery, fostering hope in the patient (Edward, Munro, Robins and Welch, 2011).

Perceptions of food as being healthful and life supporting. Therapeutic relationships provide a foundation for meeting patient’s goals and facilitating behaviour change. A supportive environment is an ideal environment in which to examine and address erroneous beliefs and distorted body image (Micevski and McCann, 2005). Provide links to peer support and web sites which enable people with anorexia nervosa to learn from others with similar conditions. Peers with anorexia provide valuable support and are effective role models (Bakker, et al.

2011). 5. Demonstrate how the nursing care can be consumer centred. Consumer centred care is ‘responsive to the individual differences, cultural diversity and the preferences of people receiving care, and is achieved partly through providing choice in health care’ (ACSQH, 2010), The nurse is concerned about psychosocial aspects and asks the patient about her understanding of health and illness and recovery. What are her concerns and expectations and the perceived effect of the illness on her functioning?

She identifies the patient’s feelings, her goals and aspirations. How would she like to be treated while in hospital? Ask how she sees her life in the next five or ten years, her career, travel and family aspirations.

Initially the nurse assumes control, but as the patient recovers, she is more of a ‘partner’ in recovery. The nurse empowers the patient, providing information about her illness, healthy eating and exercise and medications and alternative methods of coping. She is regarded as the ‘expert’ and is empowered to make choices.

She is encouraged to ask questions and is involved in the care plan and making decisions in an emotionally supportive environment. Nurses develop a therapeutic alliance with the patient and family with an attitude of empathy, understanding and hope.

They see the disease as being the illness and its symptoms, not the patient. With an understanding of the neurobiological nature of eating disorders, nurses can play a role in educating parents that it is ‘will’, ‘blame’ or fault and that it is not a choice but a brain-based mental illness (Kaye, 2008).

Staff identify their barriers to consumer centred care as they reflect on their values, beliefs and participate in supervision. Staff attend education and training to further develop their skills. Staff is well trained, knowledgeable and have good communication skills (Micevski and McCann, 2005). References Attia, E.

, ; Walsh, B. T. (2007). Anorexia nervosa. The American Journal of Psychiatry, 164(12), 1805-10; quiz 1922. Retrieved from http://0-search.

proquest. com. alpha2. latrobe. edu. au/docview/220485497? ccountid=12001 Australian Commission on Safety and Quality in Health Care (2008).

Recognising and responding to clinical deterioration: background paper. Retrieved 17 October from http://www. safetyandquality. gov. au/wp-content/uploads/2012/01/BackgroundPaper.

pdf Australian Government Department of Health and Ageing (2010). National eating disorders collaboration, Retrieved 18 October from http://www. health. gov. au/internet/main/publishing. nsf/Content/mental-nedc Bakker, R, van Meijel, B.

, Deukers, L. , van Ommen, J. , Meerwijk, E. , van Ellburg, A. 2011).

Recovery of normal body weight in adolescents with anorexia nervosa: the nurses’ perspective on effective interventions. Journal of Child and Adolescent Psychiatric Nursing, 24, 16-22 doi: 10. 1111/j. 1744-6171. 2010.

00263. x Crow, S. J. , M. D. , Peterson, C.

B. , PhD. , Swanson, S. A. , ScM.

, Raymond, N. C. , M. D. , Specker, S.

, Eckert, E. D. , M. D. , & Mitchell, J. E.

, M. D. (2009). Increased mortality in bulimia nervosa and other eating disorders. The American Journal of Psychiatry, 166(12), 1342-6. Retrieved from http://0-search.

roquest. com. alpha2. latrobe. edu.

au/docview/220463032? accountid=120 Kaye, W. (2008). Neurobiology of anorexia and bulimia nervosa. Physiology & Behaviour, 94, 121-135. http://dx. doi.

org/10. 1016/j. physbeh. 2007. 11. 037 Repper J.

& Perkins R. (2003) Social Inclusion and Recovery: A Model for Mental Health Practice. Bailliere Tindall, London. Royal Australian and New Zealand College of Psychiatrists Clinical Practice Guidelines Team for Anorexia Nervosa (2004). Australian and New Zealand Journal of Psychiatry, 38, 659–670.

Retrieved October, 17 from http://www. ranzcp. org/Files/ranzcp-attachments/Resources/Publications/CPG/Clinician/CPG_Clinician_Full_Anorexia-pdf. aspx Snell, M. (2011) Eating Disorders in Edward, K.

, Munro, I. , Robins, A. ,Welch, A. (eds. ) Mental Health Nursing Dimensions of Praxis-Melbourne: Oxford University Press Spandler, H. , Secker, J.

, Kent, L. , Hacking, S. , & Shenton J. (2007). Catching life: the contribution of arts initiatives to recovery approaches in mental health.

Journal of Psychiatric and Mental Health

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• Case report
• Open access
• Published: 15 February 2022

Terminal anorexia nervosa: three cases and proposed clinical characteristics

• Jennifer L. Gaudiani   ORCID: orcid.org/0000-0002-2035-9390 1 ,
• Alyssa Bogetz 2 &
• Joel Yager 2  

Journal of Eating Disorders volume  10 , Article number:  23 ( 2022 ) Cite this article

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Most individuals with eating disorders will either recover, settle into an unrecovered but self-defined acceptable quality of life, or continue to cycle from crisis to relative stability over time. However, a minority of those with severe and enduring eating disorders recognize after years of trying that recovery remains elusive, and further treatment seems both futile and harmful. No level of harm reduction proves achievable or adequately ameliorates their suffering. In this subgroup, many of those with anorexia nervosa will experience the medical consequences of malnutrition as their future cause of death. Whereas anyone who wishes to keep striving for recovery despite exhaustion and depletion should wholeheartedly be supported in doing so, some patients simply cannot continue to fight. They recognize that death from anorexia nervosa, while perhaps not welcome, will be inevitable. Unfortunately, these patients and their carers often receive minimal support from eating disorders health professionals who are conflicted about terminal care, and who are hampered and limited by the paucity of literature on end-of-life care for those with anorexia nervosa.

• Case presentation

Three case studies elucidate this condition. One patient was so passionate about this topic that she asked to be a posthumous co-author of this paper.

Conclusions

Consistent with literature on managing terminal illness, this article proposes clinical characteristics of patients who may be considered to have a terminal eating disorder: diagnosis of anorexia nervosa, older age (e.g. age over 30), previous participation in high quality care, and clear and consistent determination by a patient who possesses decision-making capacity that additional treatment would be futile, knowing their actions will result in death. By proposing the clinical characteristics of terminal anorexia nervosa, we hope to educate, inspire compassion, and help providers properly assess these patients and provide appropriate care. We hope that this proposal stimulates further expert consensus definitions and clinical guidelines for management of this population. In our view, these patients deserve the same attendant care and rights as all other patients with terminal illness, up to and including medical aid in dying in jurisdictions where such care is legal.

As a patient with severe and enduring anorexia nervosa advocating for my legal right to MAID (medical aid in dying), I confronted numerous obstacles and challenges from the medical profession, related not just to the question of whether I should have access to MAID generally, but more so, how my anorexia, a psychiatric condition frequently misunderstood by the medical community, interacted with my decision making capacity and desire to pursue MAID as one potential option knowing that my illness was indeed terminal. –Alyssa

The vast majority of potentially terminal illnesses carry with them thoughtfully considered and evidence-based staging criteria. These criteria allow patients and clinicians to distinguish mild and likely curable presentations of the disease from irreversible, pre-terminal and terminal stages. Medical specialties treating cancer, organ failure, or various infectious diseases have dedicated considerable attention and resources to delineating levels of severity. While preliminary suggestions for labeling severe and enduring anorexia nervosa (SE-AN) [ 1 ] and for staging the disorder have been proposed [ 2 ], generally accepted staging criteria for anorexia nervosa (AN) have not yet been developed. Remarkably, the same diagnostic label (“AN”) and treatment criteria that apply to teenagers only a few months into their disorder are also used for patients who are decades older, who have lived through innumerable admissions to inpatient and residential care facilities, and whose quality of life has been irrevocably damaged by persistent, severe mental and physical illness. The field acknowledges SE-AN as a somewhat distinct clinical condition, but despite thoughtful clinical and research efforts [ 3 , 4 ] the designation has not been formalized as a diagnosis, and consensus regarding criteria for SE-AN remains elusive [ 5 ].

AN carries the second highest mortality rate in the DSM-5 after opioid use disorder, with a death rate estimated at 5–16 times that of the general population. [ 6 , 7 ] Several important recent studies confirm and expand upon these data. A specialized medical inpatient unit in France for those with severe anorexia nervosa evaluated 384 patients admitted over 17 years, with a mean age at admission of 29.4 years old. The standardized mortality ratio (SMR) was 15.9 for women and 22.4 for men, where older age was determined to be a major predictor of mortality. The mean age at death was 41.3 (± 15.3) years, on average two years after hospital admission. The SMR was maximally increased for patients whose first admission to the unit took place while they were between 25 and 35 years old. Specifically, those admitted between 30–34 years old had the highest SMR of 26. Somatic (medical) causes accounted for 43% of deaths, while 11.5% of deaths were caused by suicide. [ 6 ] In a registry-based observational epidemiological study encompassing the entire population of Denmark over 44 years, the SMR for all-cause mortality reached a maximum of about 6 in the age group 20–34 years, and the SMR for suicide in those with AN was 11. Natural causes accounted for two-thirds of death in those with AN. [ 8 ] Finally, a retrospective cohort study evaluated 19,041 individuals with an eating disorder in Ontario, Canada, using administrative healthcare data. The entire cohort, not comprised only of those with AN, had an SMR of 5; they found that potential years of life lost were 6 times higher than expected compared with the Ontario population. Similar to the other studies, peak values for SMRs were observed among adults between 30 and 44 years old, and again the SMRs observed in males were almost two-fold higher than in females. [ 9 ] Importantly, the profound suffering inherent in AN drives the high suicide rate noted in multiple studies, where up to 20% of patients who die prematurely do so by suicide [ 10 ]. Compared with gender- and age-matched groups, patients with AN are 18 times more likely to die by suicide [ 11 ].

Based on these data, AN can unquestionably prove fatal. Despite this fact, the field lacks clinical roadmaps for compassionate, appropriate care for those who will not be able to survive. This does great disservice to patients and their families. By comparison, we do not expect individuals with metastatic lung cancer who have disease progression despite past treatments, which often come with negative sequelae, to keep presenting for those same ineffective treatments. Rather, they are more likely to receive the psychological preparation, connection, and medical and emotional support offered to patients with terminal conditions. Although current laboratory measures and imaging studies by themselves are unable to help us stage patients with AN, based primarily on clinical histories and patients’ narratives we can better understand the clinical course of this illness and the subset of patients with AN who may seek palliative care [ 12 , 13 , 14 ].

There is growing recognition that palliative care may be appropriate for some patients, but the clinical characteristics for terminal anorexia nervosa have not been proposed. Delineating and validating this stage would greatly assist patients, families, and clinicians across disciplines, especially those in palliative and hospice care. Designating terminal AN may more readily enable patients to receive palliative care, hospice care, and emotional and practical resources for loved ones, as well as access to medical aid in dying (MAID) where legal. Therapeutic goals in these situations are to ameliorate suffering and honor the life lived. Of note, MAID is offered to individuals whose death is inevitable within six months from an underlying disease process; it provides patients a choice in how they die, not whether they die. It is not a means of suicide.

In this paper, we describe three cases of exceptional people whose AN was terminal, and who died peacefully with family around them. All three were patients of a private practice outpatient medical clinic specializing in eating disorders in Denver, Colorado. One patient, who had been a medical researcher herself, was so passionate about the topic that she asked to join as a posthumous author on this paper so her voice could be heard. The other two patients’ parents consented to share their son’s/daughter’s stories and reviewed, and all three families edited the relevant story prior to manuscript submission. All families agreed that first names should be used instead of a pseudonym or initials in order to emphasize the truly personal, real-life origin of these stories. Based on these experiences and others [ 12 , 14 ], we conclude by proposing a set of clinical characteristics of those who can be identified as having terminal AN.

Case presentations

Case 1: aaron.

Aaron was a 33-year-old man with a long history of restrictive AN, severe obsessive compulsive disorder (OCD), recurrent major depression, and chronic suicidality. He had been a sensitive child with low self-esteem and perfectionism from a young age. His parents noticed OCD traits from early childhood, but he did not receive this formal diagnosis until years later.

During his freshman year in high school, a health class warned about the risks of “eating junk food.” Aaron began to run regularly and played hours of basketball daily. One by one, he eliminated dietary fats and created food rules. His parents thought this was just a stage, an assessment they came to understand very differently over time, but they eventually recognized his serious problems and established a treatment team. Later in high school, Aaron was hospitalized several times for AN, participated in family therapy, and required his mother’s presence, even at school, to complete meals. Despite graduating as valedictorian of his high school class, he was initially too ill to start college. Later, his attempt to begin college was thwarted by his need for constant supervision of food intake. Aaron’s perfectionism and self-criticism ultimately ended his college career.

Over the next two decades, Aaron spent countless months in medical hospitals and in inpatient and residential eating disorder settings. He repeatedly gained the weight required for discharge so that he could return home, only to inevitably relapse. He felt mortified and guilty about the amount of money his family spent on his treatment, and he was acutely aware of life passing him by.

In his early 30 s, following a long and serious downward spiral during which he refused a higher level of care, his family finally threatened to call 911 if he did not enter treatment. Consequently, he was admitted to an inpatient eating disorder program. After first spending time in a hospital setting for stabilization where he refused to eat, a feeding tube was placed. A court mandate to ensure ongoing treatment was requested and granted on grounds of grave disability from his mental illness, and he spent the next 10 months against his will in inpatient and residential eating disorder care. He cut off communication with his parents but allowed the treatment team to talk with them. Eventually his therapist convinced him to have family sessions over the phone; it was the only time his parents could talk to him.

Aaron’s persistent resistance to treatment throughout his stay at the eating disorder program caused difficulty in maintaining his nutritional stability. He underwent in-depth exposure and response prevention therapy around food as he continued to be tube fed, and he was finally able to sustain his weight with oral food. At that time, he only agreed to eat to avoid the prospect of being administered olanzapine against his will, as he feared this medication would cause him to gain weight.

After Aaron had been fully weight restored for several months, he was stepped down to a partial hospital program (PHP). He immediately restricted intake and proceeded to lose nearly a pound a day, resulting in readmission to residential treatment where, after intensive efforts, he once again achieved his target weight. Aaron struggled with basic activities of daily living due to his OCD. For instance, he resisted using lotion or lip balm as he feared they might be absorbed into his skin as calories. He completed a course of intranasal ketamine in hopes of alleviating his OCD, depression, and suicidality, but ketamine treatments had no meaningful impact.

Author JG (hereafter referred to as “Dr. G”) first met Aaron for an outpatient medical consultation after he had completed this most recent residential treatment and was once again about to step down to PHP. This consultation constituted one component of an organized, comprehensive future discharge plan. In this initial medical visit, after a year of residential treatment, Aaron was medically stable. He desperately missed his eating disorder behaviors, fantasized about eating less and losing weight, and wished his AN would have already taken his life. Aaron mused that his all-or-nothing, perfectionistic temperament made the unknown terrifying, but he felt proud of how rigidly he had previously adhered to his eating disorder rituals, as he believed that few others could achieve a similar degree of calorie restriction. Despite his long history of treatments, including his year of suffering through the long court-mandated treatment, Aaron had never meaningfully changed his eating related attitudes, thoughts, or behaviors. He had absolutely no motivation for recovery.

During the initial consultation, Dr. G informed both Aaron and his emotionally supportive and highly invested parents that she could offer ongoing outpatient medical care along one of two pathways. In one, Aaron would complete PHP, be discharged to home (where he lived with his parents), see a therapist and dietitian regularly, and work on whatever degree of recovery he could bear, aiming toward a quality of life that he called “living productively.” Should he decide that he required a higher level of care, the team would promptly support that choice. On the second pathway, if Aaron relapsed and declined readmission, the outpatient team would no longer battle with him to seek a higher level of care, given the futility of his most recent, autonomy-depriving treatment course. Rather, the family and team would support and comfort him until such time as he required home palliative care and eventually hospice support. Aaron initially felt that these two choices were needlessly stark and binary, and he settled back into PHP.

Two months after the initial consultation, Aaron continued to endure PHP, primarily to honor his commitment to his residential treatment team that he would see through his course of treatment. But he felt no better. He received a course of intravenous ketamine to supplement the intranasal ketamine treatment initiated in the residential program, but he experienced no improvements in mood, hopelessness, or OCD. Just before discharge to his parents’ home, he still hadn’t decided which treatment pathway to choose. He would not accept psychiatric medications, and a team consisting of a physician, therapist, and dietitian was established to care for him at home.

However, starting on the day of his discharge from PHP, Aaron stopped eating altogether, a course of behavior that is rare even in those with severe AN. He drank only water, stating, “I don’t want to die, but my eating disorder is in charge.” A week later, he met with his longstanding outpatient therapist. She was very apprehensive about his ability to remain in the community, and she felt ambivalent concerning what her role might be if he insisted on remaining at home. Aaron told her, “I wish I could eat, but I won't eat; I don't want to die, but I feel hopeless that there's any other pathway.” The therapist worried that she would be forced to have Aaron detained against his will in his home state. A formal decision-making evaluation was performed by a local psychiatrist, and Aaron was found to possess decisional capacity. Consulting with his home therapist, Dr. G proposed that Aaron’s refusal to eat was less about “wanting to die” than simply accepting that he could not live—he was not “attracted to life” [ 17 ]. Dr. G suggested that the proper course at this point would be to proceed with a home palliative care consultation and shift treatment goals to supporting comfort and dignity, as Aaron clearly declined a return to treatment.

During a telemedicine meeting with Dr. G a week later, Aaron asserted, “I don't want to do this for anybody else anymore. It's time to do things only if I want them.” At about this time, Aaron also sought comfort from his therapist and his religious leader, as the prospect of death frightened him, and he was unsure what dying would mean. But he described that being given the choice of what would happen next was empowering – “different, scary, relieving, and right” – in great contrast to repeatedly feeling powerless and demeaned by his many prior chaotic relapses followed by intense pressures to return to treatment. Aaron signed a Do Not Resuscitate (DNR) order and within the next few days was referred to a home palliative and hospice care organization. Dr. G spoke with the organization’s medical director to explain why this brilliant 33-year-old man who was refusing to eat was being referred for palliative care. Aaron hoped that the home palliative care service would help him and his family “process this sorrow and fear.”

Two weeks later, after more than a month of eating nothing and drinking only water, Aaron’s OCD and insomnia were heightened; he worried that by simply smelling his mother’s cooking he might be ingesting those calories. He believed that he might absorb calories from the grocery cart of the person ahead of him at the store. Always reluctant to take medications, he began to consider accepting anxiolytics from the hospice staff, whom he thought were extremely kind.

Aaron noted that by spending no energy forcing himself to eat, he was able to direct energy toward engaging in his faith. His siblings came to visit, and as they talked and laughed, he realized it had been years since they had connected positively. Throughout the course of his eating disorder, every family connection had felt fraught. He summarized his collective family’s response to this pre-terminal phase as, “They were very supportive. They recognize the gravity of this situation. They aren't angry, sad but not fearful.” As he chose to spend his days talking with his parents and sleeping, he noted that he was thinking about others "rather than being so self-absorbed." Imagining his parents’ distress made him sad, and he wanted his parents to keep getting support after his death. "This is one of the hardest things they've had to deal with in their lives."

Even as he rapidly lost weight, Aaron’s body distortions grew worse, and he kept wishing his weight would fall even faster. After almost six weeks without food, Aaron began accepting anxiolytics and antiemetics. He obsessed that someone might have injected his water bottles with calories. When Dr. G asked if he had any words to share for posterity, he expressed words of warning for those who might find themselves in his situation: “OCD will amplify,” “Be prepared for an annoying obsessive brain that might drive you crazy,” and “Just because you aren’t eating doesn’t mean it’s all good now.” He expressed how vital it was to “have people in your life [doctor, parents, family, close friends] whom you trust and can seek reassurance from, who love you unconditionally,” whose comforting words can be “life-saving in terms of giving you peace.” He connected deeply with a feeling that peace comes from God.

After about eight and a half weeks without any food, Aaron was spontaneously vomiting daily and feeling much weaker. Beautifully cared for by home hospice, he began to take low dose morphine for pain and distress. When Aaron’s parents wondered what his death certificate would say about cause of death, Dr. G reassured them that the cause would be anorexia nervosa and malnutrition, not suicide. Often speaking through tears, Aaron’s parents described how they were enjoying a deep loving sweetness with their son that they hadn’t experienced in years, and how they would miss him when he died. They felt compassion for those who lose a loved one abruptly without having time for love, connection, and closure. Often, they saw glimpses of the boy they hadn’t seen in years, as when he looked at photos that made him laugh.

Two weeks later, Aaron passed away with his family surrounding him. Even as they were exhausted and grieving deeply, his parents expressed enormous gratitude for the care he received and for the way they had been able to reconnect with him.

Case 2: Jessica

Jessica was a 36-year-old woman with a history of OCD and AN, purging subtype (laxatives) that began during her junior year of high school, when she tried to lose weight prior to a vacation. This started a pattern of restricting, binge eating, and then overexercising that persisted into college. When her weight, which had remained normal for some time, did eventually drop, she left college for intensive outpatient eating disorder treatment. It was such a difficult experience that from this time on, she mistrusted eating disorders providers. She lamented that she lost most of the fun of college to her eating disorder.

Due to progressive constipation, Jessica began using laxatives, which led to laxative abuse. She soon found that every time she stopped taking laxatives, her weight skyrocketed (due to rehydration and rebound edema). Ultimately, her AN caused her to drop out of nursing school. Jessica experienced her first hip fracture from severe osteoporosis when she was critically emaciated at age 27, requiring her to move home with her parents; the following month she incurred a stress fracture of her shoulder from using crutches. Her parents pursued guardianship as Jessica was refusing a higher level of care, but her medical team refused to release records to the family’s attorney due to HIPAA. Without the option to pursue guardianship with mandated longer-term residential treatment, her parents came to believe this was the critical juncture where recovery might have been possible, but instead her disease became more entrenched. Over the next 7 months, working with her outpatient primary care provider, dietitian, and therapist, she slowly gained a meaningful amount of weight, although she remained very underweight. Following this, she got an excellent job and once again lived independently from her parents, working productively for three years. However, at age 29, her increased anxiety, the side effects of laxative abuse, and the shame of her anorexia caused her to separate herself from her family and to work from home, increasing her isolation. She checked herself into an expert inpatient medical center to stop using laxatives and then spent a week in inpatient eating disorder treatment before leaving against medical advice. Jessica did manage to stay off laxatives for a year but was plagued by edema. Repeatedly, restriction and overexercise would recur, usually accompanied by laxative abuse, which at its worst consisted of taking 100 tablets a day.

During her initial consultation with Dr. G, Jessica memorably stated, “The eating disorder keeps me out of integrity with my values. It doesn't feel good. You believe something but aren't living it. This is the biggest motivation for wanting to change. I really want to live in alignment with my values, honoring my body, feeling things, stopping being unkind to my body.” Although very kind and compassionate towards others, she struggled to show herself the same grace.

Jessica met criteria for immediate admission back to the inpatient medical service, but given her prior negative experiences with treatment, she wanted to attempt to keep working and live near her parents. She agreed to outpatient care with a multidisciplinary team, focusing on harm-reduction goals. Initially, Jessica was able to follow medical and nutritional recommendations faithfully. Then, within three months of initiating outpatient medical care she fell and sustained a pelvic fracture. This was frightening, disabling, and prevented her from taking her calming (and to her, calorie-burning) nature walks. Overcome by managing the challenges of a rapidly changing body on her own and worried about her fracture and bone health, Jessica readmitted herself to specialized inpatient medical care for medical stabilization. Following stabilization, she agreed to transfer to residential care to attempt a full course of eating disorder treatment. However, after two weeks in the residential care program she left against clinical advice, unable to follow the meal plan consistently and feeling extremely distressed by her bodily changes (even though her weight had barely changed).

At home, Jessica again tried hard to follow treatment recommendations at a harm-reduction level (no laxatives, low caloric intake, gentle movement in the outdoors), but once more the distress of bodily changes was too much for her to bear. About a month after leaving the residential program, Jessica first talked about the possibility of palliative care and began talking with her mom about suicidal thoughts. Most nights she would say she hoped she didn’t wake up the next morning. In order to help Jessica resist the laxatives that gave her such severe abdominal pain and nausea, and still hoping to support her in finding an acceptable degree of harm reduction, Dr. G worked with Jessica to use diuretics to manage fluid weight changes. (Notably, this approach would rarely if ever be offered in a more typical eating disorders treatment plan.) Jessica operated within these guidelines and constraints for the next five months, at times thinking she might be able to persist, but more often lamenting that this strategy was still too difficult and painful. By this point, she had been granted indefinite leave from work and moved in with her parents.

About nine months after initial consultation, Jessica acknowledged that it was time for a palliative approach, confessing, “I’m just ready. It's been a long fight. I'm eating so little, and I'm back on the laxatives every couple of days.” She declined intranasal or intravenous ketamine which might have ameliorated her depression, OCD symptoms, and hopelessness. As she felt progressively miserable physically and psychologically, her suicidality increased. She purchased a gun, and one night she drove to a bridge with thoughts of jumping off, but then decided to return home. She had difficulty finding a therapist who understood terminal AN and who could accept her treatment trajectory, but she found and worked with a kind naturopathic doctor who specialized in mental health, and she did experience some benefit from psychiatric medications.

At this point, fearful of suffering a long, drawn-out death from starvation and unwilling to put her parents through the agony of witnessing this decline, Jessica requested referral to a palliative care specialist who assessed patients for medical aid in dying (MAID). Dr. G spoke with Jessica’s parents repeatedly, assuring them that guardianship and forced treatment were likely now to be futile. The parents had done everything possible to help their daughter find an acceptable quality of life. Jessica signed a DNR order. After speaking with the palliative care physician by phone to discuss the case and advocate for Jessica, Dr. G completed the MAID forms as consulting physician, given that Jessica’s prognosis was presumed to be 6 months or less. The palliative care physician prescribed the MAID medications.

About a year after the initial consultation, and about three months after the MAID consultation, Dr. G saw Jessica for the last time via telemedicine. Jessica wrote to Dr. G in an e-mail, “I’ve been back in a place the last several weeks where the emotional pain and the physical and emotional exhaustion of living like this are just too much for me. I’m trying to make it to the end of May, maybe through June to meet my brother’s upcoming baby before I go.” Jessica described her life as filled with unbearable pain and anxiety. Watching people walking around the neighborhood making future plans felt devastating, because she’d “give anything to be in anybody else’s shoes.” Yet when she thought about stopping diuretics, eating enough food, and gaining weight so she could physically live that life, she said, “it feels impossible.”

Jessica waited several weeks to fill the MAID prescription. She then set multiple dates to use it over a couple of months and changed her mind as that date got closer. A month before her death, she started to receive home hospice services. During this time period, she had long conversations with her parents, brother, and friends, noting that she had many happy memories over her life, apologizing for what she had put them all through over the years, and stating that she hated her eating disorder. She told them she realized that, while her eating disorder behaviors made it seem like she hadn’t loved or trusted them at times, she loved them all very much. She repeatedly told her family that she didn’t want to die, that she didn’t want to miss out on future time with her family, friends, and niece and nephew, but she just couldn’t continue to exist this way. The emotional pain and anxiety were unbearable. She couldn’t live a normal life, and she felt her body was too destroyed to recover. Her parents believe that in her last month she was trying to die naturally by barely eating, reducing her fluid intake, and walking for hours daily, even when she had to sit down often to catch her breath. She stopped driving and carried identification in case she collapsed on a walk. She fainted at home several times in the week before her death, including the night before she died. On the day she took the MAID prescription, she stayed in bed, was at peace, and spent time talking with each parent and her brother. Together as a family, they reminisced, laughed, cried, had their “hug circle” as they had called it since her childhood, and felt surrounded by love. Her parents each held a hand, and her brother sat right next to her. During the three doses of the medicine taken over an hour, she was comfortable and conscious. Within ten minutes of taking the final dose, Jessica closed her eyes, and her breathing slowed.

Jessica didn’t choose to live with anorexia. For all the years she endured living within its prison and myriad complications, her parents ultimately felt strongly that she deserved to choose the time, place, and way of her release. They felt that an unexpected blessing of MAID was that it allowed Jessica to live several months longer than she otherwise would have. Knowing she didn’t have to die a violent death by suicide, that she would have a peaceful way out when the pain and anxiety became unbearable, and that she would be able to die with dignity surrounded by loving family, allowed her to hold on longer. As a dying wish to her mother, she shared, “Mom, I'd like you to do something that will help others not go through what I went through."

Case 3: Alyssa

Alyssa, the posthumous author on this paper, was a 36-year-old woman with OCD, depression, and restrictive AN who described herself as having “a type A, neurotic personality: a sensitive, compassionate, loving person who's incredibly self-critical and has wanted to do things 0% or 110% with no gray area.” She first felt suicidal at age 13, when she realized that her body was too large to fit into standard dress sizes for her upcoming Bat Mitzvah. She started therapy at that time and was continually in therapy thereafter. After going through high school at a higher weight, the summer before college she vowed to change her body and began exercising in earnest. In college it was easy to restrict. By the time she returned home for Thanksgiving she had lost a substantial amount of weight. Everyone praised her, and she experienced “a deluge of external validation that was irresistible,” firmly establishing her eating disorder by age 18. Alyssa wrestled with AN throughout the rest of her education and career. A brilliant academic, she became the only non-physician Assistant Director of a major academic medical center residency department, mentoring residents and students, doing research, and publishing in major journals.

After struggling with AN for 15 years, during which she received intermittent outpatient support, Alyssa moved in with her parents and reduced her workload. She was extremely helpful in her mother’s struggle with a cancer diagnosis and often underplayed the significance of her own illness. At age 33, to correct severe hypercalcemia she was admitted to the teaching hospital in which she had previously worked. The family felt that her AN was hardly addressed during that hospitalization, in part due to the fact that institutional expertise for AN was confined to a pediatric program. To them, this felt like a vital missed opportunity to attempt changing her disease trajectory, in particular as the only recommendation on discharge was to seek residential eating disorder care.

Alyssa worked for 7 months to obtain insurance authorization for care in a residential eating disorders program, and to gain enough weight to meet their admission criteria. However, upon admission to that program she was deemed still too underweight (by one pound) and was referred to a specialized inpatient medical program. Being rejected for care after so much work also felt like a missed therapeutic opportunity. After a delay, Alyssa spent several weeks in the specialized hospital program and met the minimal criteria for discharge, departing with the understanding that she would immediately enroll in another residential program. However, after discharge from the hospital she refused to do so and could never accept going to an eating disorders program thereafter.

In the years prior to initial consultation with Dr. G, Alyssa’s outpatient treatment team included a local primary care physician with whom she was very close, a therapist she had been seeing regularly in recent years, and an expert eating disorders therapist who had worked with her and the family over the years. Over a period of three years, Alyssa had intermittently thought about and even phoned Dr. G’s outpatient medical clinic, but she never booked an appointment, indicating that she felt very ambivalent about recovery and was considering a palliative care approach. When she finally presented for an initial consultation, Alyssa identified her goals as follows: “I really want a life, to use my Masters in Social Work degree to help others heal, to find a partner, and to experience pleasure, laughter, joy, and freedom, including from my own brain.” As her main barrier she cited the chronic, longstanding shame and body disgust that persistently kept her from meeting her own needs.

At the time of initial consultation, Alyssa met criteria for inpatient medical hospitalization, although she experienced remarkably few physical symptoms, which reinforced her view that she must be “fine.” She declined a higher level of care. Nonetheless, she saw herself as shamefully thin, more keenly felt given her extended family’s experience of the Holocaust. She wanted to be able to walk down the street without turning heads due to being so emaciated, but concurrently struggled to balance this desire against her strong resistance to gaining weight.

Alyssa agreed to ongoing care with the clinic and accepted referral to an expert registered dietitian. She committed to at least attempt a harm reduction approach in which she would slowly restore weight to a point where she could be more physically, mentally, and professionally functional, and where she could resume her yoga practice. However, she stipulated that she would halt weight restoration if and when her AN thinking could no longer bear it. Over the course of the next year or so, she valiantly succeeded in increasing her caloric intake considerably above her previous severely restrictive baseline. But due to the hypermetabolic state often seen in malnourished patients who increase their caloric intake, she experienced no meaningful weight gain.

Nine months after initial consultation, Alyssa emphatically reflected that her goals had not changed, but she had grave doubts about her ability to achieve them. She described feeling “utterly exhausted” and could no longer muster the strength to keep fighting. She vividly described her daily internal battles, struggling every minute of the day to eat enough of her meal plan and constantly fighting against the extreme headwinds of her AN’s resistance. Once she had eaten, she would bitterly berate and punish herself for having done so. At this point she was not certain that her AN was terminal, but she was moving strongly in that direction and wanted to understand her options.

Dr. G clarified that at any time, Alyssa could choose to pursue full recovery and a higher level of care, could continue fighting as she was, or could consider two options that did not focus on recovery. The first option would be choosing palliative care. This would acknowledge that she would likely not survive and also allow her to consider a "bucket list" of experiences for the time she had left. Palliative care would mean that she could eat what appealed to her, with no pressure applied by the team. The treatment focus would be on finding joy and comfort as much as possible. Dr. G emphasized the value of signing a DNR document to protect Alyssa from the mandates of the healthcare system in the event that she experienced an abrupt decline and/or cardiac arrest. Alyssa was also advised that a home palliative care/hospice evaluation would be useful to oversee her treatment as desired during this stage, for emotional and practical support if needed and to protect her parents from any potential legal repercussions should she pass away at home as an emaciated adult. Dr. G noted that for some patients, this stage can last a long time, and that some can “reset” when pressures to gain weight and threats of mandated treatment are removed. In some cases, this state of reduced external pressure might even lead to renewed ability to engage in meaningful harm reduction and even recovery work.

The second option would be to seek hospice care. Hospice care would be suitable if the torments of her AN and the extraordinary difficulties of moving about the world in a skeletal body were beyond being helped by a palliative care approach. Given her faster metabolism, if Alyssa abandoned her attempts to consume a higher meal plan, she would clearly have a less than six-month prognosis and qualify for hospice care. With this option, Dr. G would refer Alyssa to a home hospice service, anticipating that she would become increasingly frail. The home hospice staff would establish warm relationships with Alyssa and her parents, make sure that anxiety, insomnia, nausea, and/or pain were managed, and provide them all access to psychological and spiritual support as desired. During this time, Alyssa could live her life as she chose. As she became less independent, hospice would provide assistive aids such as a shower chair, bedside commode, and hospital bed. The overall goals would be to maximize Alyssa’s comfort, dignity, and time to connect with family.

During this conversation, Dr. G also noted that Alyssa lived in a location where MAID was legal. If she chose the hospice route—and had interest—a referral for the option of MAID was also possible. Alyssa was informed that she herself would have to administer the MAID medications if she chose to use them; no one else could administer them to her. After completing the required regulatory processes and filling the prescription, MAID medications could be used or not as desired. But, as the human body can be exceptionally resilient even with terminal malnutrition, having the medications at hand would give Alyssa the opportunity, while still having an intact brain, to choose not to suffer through additional weeks of extreme physical discomfort and weakness.

A week after these options were reviewed, Alyssa wrote Dr. G:

After deep reflection and discussion with my parents, I’ve decided it makes sense to initiate the Hospice process (Ie evaluation, etc.) now so my family and I are prepared for what may come. I would value your guidance and help with this….I do not know if they have ever worked with patients like myself… I would love for you to be the PCP overseeing this process regardless of the Hospice we select if, and only if, you are comfortable with this. I want to be clear that my priority is to obtain access to the medications that would support my legal right to die should I wind up choosing this path in the future. I feel strongly that based on our thorough discussion, I am aware of my options and their risks and benefits in light of the trajectory of my illness. Please do let me know what I can do to help facilitate initiation of this process. I am available and happy to help.

In a family meeting the following week, Alyssa’s father, a physician, tearfully shared the principles he and Alyssa’s mother had come to accept during intense conversations with their daughter: She had the right to choose care or no care after having been ill for 18 years. There would be no ultimatums. This disease would probably be the reason that "we lose you." They knew how much she had suffered and continued to suffer, and they understood that at some point the psychological anguish would become unbearable for her. They respected that this could be as bad as physical pain. They accepted that when the anguish became unbearable, Alyssa would have the right to end her life by taking medical aid in dying medications. They agreed that financial planning and end of life planning were worthy tasks. To Dr. G and to Alyssa, these words conveyed deeply reassuring love, compassion, and support.

Alyssa’s parents asked whether any treatments remained that might yet change the outcome of her course, specifically noting that Alyssa had not completed a full residential eating disorder program, never fully restored weight, never tried newer psychedelic options such as ketamine, psilocybin, or MDMA, and hadn’t had a feeding tube. Dr. G acknowledged that all but the feeding tube might ordinarily be undertaken prior to someone’s seeking end of life care for AN. Yet, she had been suffering for so long, and despite many conversations about all these treatment possibilities, Alyssa would not consent to any of them. Therefore, given her clarity of understanding around these issues and her sense that she could not fight anymore, everyone had to accept that they weren’t meaningful options. With regards to a surgical feeding tube in the context of AN rather than due an anatomical impediment, Dr. G noted that if someone restricts the “tube God gave them,” i.e. their esophagus, they would also be very likely to restrict through a surgical feeding tube, so that would not be a long term solution.

An excellent home hospice agency agreed to work with Alyssa and her family, and Dr. G placed a referral for a MAID consultation. The palliative care physician met with Alyssa about MAID. Since the idea of requesting MAID for a patient with AN was so foreign and unnerving to him, he asked Alyssa to be assessed formally for decision-making capacity. After a local psychiatrist confirmed that Alyssa clearly possessed decision-making capacity, the palliative care doctor fully accepted Alyssa’s right to enter home hospice care and could understand the rationale for MAID provision. However, even as he and his team provided empathetic support, he ultimately felt personally unable to write the MAID medication prescription due to his discomfort with the unique presentation. Clarification with the state’s Medical Board and other regulatory entities determined that Dr. G, licensed in this state although based in another state, could serve as prescribing physician, and that Alyssa’s longstanding primary care physician could serve as consulting physician. Dr. G prescribed the MAID medications about six weeks after Alyssa entered hospice care. Four days before her death, eager to contribute to this article, Alyssa sent Dr. G the following (unedited) notes about her thoughts on this complicated topic:

Below I share the considerations I made as I weighed the potential benefits and risks of pursing MAID. I share my experience in hopes of offering a first-hand perspective that may help other patients and physicians as they consider and weigh the option of utilizing MAID, rather than offering a prescriptive decision-making tool or recommending that all patients with terminal SEAN have access to such medication.

Personal considerations:

MAID not pursued in isolation, but rather in the context of being in Hospice care following a terminal dx of anorexia (i.e., estimated 6 months or left to live). I would not have qualified for Hospice care unless my illness was terminal (i.e., not reversible for me in light of physical, mental, emotional damage to my body).

In my individual case, death was inevitable. I clearly understood my prognosis and accepted this. I saw MAID as an opportunity to select a specified time and circumstances for my death. Death itself is fraught with fear, ambiguity, a sense of powerlessness and tremendous anguish, not just for the patient who is dying, but for that patient’s family. Upon deep reflection, I came to see MAID as an opportunity to relieve my suffering and minimize at least some of my family’s suffering related to my death by choosing the when and how of my death, rather than “wait” for sudden death from cardiac arrest or other outcome of my illness or experience a slow and protracted death as my family and I watch my body and mind degrade over days and maybe even weeks of time

I had to ask important questions about my quality of life and whether for me, the quality of my life was more important than the quantity of days I remained alive. I was experiencing extreme physical pain, was unable to walk, could not sit without discomfort, I couldn’t swallow my food, my breath was labored, and I had frequent chest pain. I was not living. I felt like “dead girl barely walking.” For me personally, a longer life spent in bed feeling ill and suffering and dependent on others to provide most of my care was not how I wanted to live. My concerns about this suffering trumped any fear of selecting the route of my death (again, knowing that death was inevitable). Knowing that I could utilize MAID if the suffering became so severe offered me a sense of ease and peace of mind in my final stage of life that I would not have had otherwise

One question that I needed to answer for myself honestly was whether I understood the impact use of MAID would have on my family. I had to confront that my use of MAID would be difficult for them, not just the idea of my using it but how their presence at the end of my death, watching me administer my own medications to die, would be ingrained in their memories of me as their daughter and their sister, and how this story of my passing would affect my family throughout the generations to come (i.e., what stories would they tell about my life and death, how could this be traumatizing or perhaps seen as healing?). Such questions could only be answered through ongoing involvement and discussion with my family members, which we had with my physicians and amongst ourselves

Another important question I asked was how would I want a family member to die if I knew their illness was terminal and death was imminent. Would I see their use of MAID as a compassionate act towards themselves? How would I tell their story? Would I extend the compassion I was asking for from them to them if the situation were reversed? I also asked them individually how they would want to die if they could have the option of choosing?

All in all, a voluntary decision, not made in haste, thoughtful, careful, meticulous. Decision made as arrangements were made for my passing including burial arrangements, financial and family orders.

Decision also heavily considered with spiritual advisors (chaplain, Rabbi, etc.)

Challenges faced:

MAID in general is highly controversial and its use is RARE – even for patients who do receive it, many do not end up using it. Only a handful of physicians who support using it. Makes it unknown and scary for physicians and patients alike; limited research

Makes acceptance of its use more difficult for family members, too

Prescribing MAID (for some physicians) may feel counter to physician identity as healer & fixer; may spark deep internal/ethical/moral debate for individual physicians as they weigh the option of whether to prescribe

Do they see this as an act of compassion for patients who wish to relieve their suffering?

Do they see this as prescribing a means of suicide?

Anorexia specific – for me, a big issue that caused most ethical debate was whether my case of anorexia nervosa was “reversible.” Many physicians misunderstand SEAN (not even an official DSM diagnosis) and that while anorexia nervosa is a psychiatric illness, it comes with severe medical complications that ultimately are the reason for death. Some of the physicians I worked with could not believe my illness was indeed terminal, but rather felt that there would be something that could be done to reverse the physical damage done to my body that would somehow lengthen my life (even if not for very long – i.e., 1 year).

Yes, perhaps I could stay alive for a few months while in the hospital, but I would have to live in the hospital (MDs might see the benefit of this, but could I? NO! This is where my own reflection around quality of life came in)

My personal belief that this is what makes having such an extreme form of AN so agonizing – mental and emotional suffering is compounded by painful physical complications

Gross misunderstanding about anorexia nervosa in general.

Just over a day before she died, Alyssa wrote to Dr. G, “Thank you with all of my heart for helping to make this possible. I view it as a tremendous act of love.” With family and spiritual support surrounding her, Alyssa became unresponsive in the natural course of her malnutrition. Shortly thereafter, she passed away peacefully. She never actually ingested the MAID medication she had at her disposal.

By presenting these three cases, we have intended to convey some of the emotional, moral, and ethical challenges and dilemmas that patients with SE-AN, their families, and their professional caregivers may face at the end of life. Suffering from unrelenting and irredeemable disorders, these patients made difficult choices, ultimately deciding “enough is enough” [ 18 ]. The anguish endured by these patients and their families resulted in part from lack of professional understanding and consensus regarding terminal care for patients with AN. Neither the fields of palliative and hospice care nor eating disorders have provided definitions or guidance regarding what constitutes a terminal condition in AN or proper ways to address patients and their families grappling with this condition.

Accordingly, we present the following proposed clinical characteristics of those with terminal AN for consideration by both fields (Table 1 ). As illustrated by our cases, no set of criteria will apply perfectly to every patient who identifies with having a terminal case of AN. However, based on prior literature on criteria for clinical terminality [ 15 ], high SMR in those who have previously received inpatient care, are older, and have a history of more severely medically compromised presentations [ 6 , 7 , 8 , 9 , 10 , 11 ], and clinical expertise, the authors propose these clinical characteristics. Some deviation within the second and third characteristics is to be expected and must be individualized to the patient situation. However, the first and fourth must be met in full.

Proposed clinical characteristics of patients with terminal anorexia nervosa

A diagnosis of anorexia nervosa . Anorexia nervosa is the only eating disorder that carries a guaranteed medical cause of death from malnutrition should weight loss continue unabated. As a result, consistent with literature on duration of life during hunger strikes resulting in death [ 16 ], a prognosis of less than 6 months can fairly be established when the patient acknowledges further treatment to be futile and stops engaging in active recovery work. A less than six-month prognosis is congruent with current practice around determination of terminal diagnoses. We fully recognize that patients with SE-AN are likely to have other psychiatric conditions as well.

Age of 30 or older . This criterion accommodates for what is clinically seen as a potential “late maturation phase” in which even those who have been sick for a long time may discover a shift in values and desires that motivates recovery as they enter their late 20 s. Every effort should be made to promote full recovery and continuation of life in those younger than 30. However, the SMR data of multiple recent studies showing the highest death rates in those with a history of inpatient admissions, longer duration of AN, and age over 30 years old [ 6 , 7 , 8 , 9 ], taken alongside what functionally has often been a decade or two of exhaustive, ultimately unsuccessful eating disorder treatment, indicates that the age of around 30 as a minimum for terminal AN is reasonable.

Prior persistent engagement in high-quality, multidisciplinary eating disorder care. Worldwide access to expert eating disorder care varies widely, as does the availability of access to expert inpatient, residential, and full day treatment programs for those with eating disorders. Thus, the definition of care identified here must remain somewhat broad. Before someone can decide they cannot recover, they must have participated in high-quality, expert care to the maximum extent that this is available. This provision should motivate policies that allow for transfers of patients out of designated “networks” that lack expertise, with funding coverage provided at a center of excellence. Ideally, at least some of this treatment will have been undertaken at a sufficiently high level of care to provide extensive structure and support, preferably to the point of full weight restoration at least once in the relatively recent past. Congruent with receipt of such care, qualified health care professionals on the team must support the patient in their decision to stop fighting. We acknowledge that many factors may impact patients’ ability to participate in such care, including lack of access to eating disorders expertise, limitations of the healthcare system, and a personal sense—often based on prior treatment experiences—that admission to certain care settings would cause more harm than good.

Consistent, clear expression by an individual who possesses decision-making capacity that they understand further treatment to be futile, they choose to stop trying to prolong their lives, and they accept that death will be the natural outcome. Careful determination of decisional capacity is required in each case [ 19 ]. An individual who wavers in their conviction or expresses different goals to different people is not yet ready to receive the appellation of terminal AN.

Most eating disorders providers have cared for patients with AN who, despite suffering for decades, continue to show extraordinary determination and resilience. These patients still want help, at least with a harm-avoidance strategy if not with outright full recovery. In these cases, every effort must be made to support the patient’s wishes and provide appropriate resources for recovery. There must be no “giving up” on those who still seek to get better. Indeed, the drive to live and ability to find aspects of life worth fighting for can be seen vividly in the majority of those with AN, even in the face of years or decades of illness and suffering. The psychological imperatives of AN that often lead patients to resist or refuse clinically appropriate care, hazarding medical and psychological risk and deterioration, may seem to conflict with a stated desire to keep trying for recovery. However, in honoring patient autonomy, responsive care must always be offered as long as an individual states that this is their wish.

Patients in their earlier and younger years of AN may say they would rather die than gain weight or nourish themselves properly, a characteristic indicating that AN may present as an ego-syntonic mental illness. Nonetheless, the majority of patients with AN ultimately recover, and such expressions of anguish can be met with compassion and appropriate multidisciplinary care. We would not condone accepting a terminal diagnosis in younger patients. Of note, there are no explicit physiologic markers or measurables (weight, degree of weight loss, presence of or degree of organ failure, vital signs) which delineate someone with terminal AN. Even individuals with extreme medical malnutrition may recover fully if they so choose and have access to expert care. By contrast, if all criteria for terminal AN are met, as in the case of Aaron, individuals should not be obliged to demonstrate extreme medical instability before having the right to choose to stop fighting. Furthermore, while the obsessional ruminations of individuals with AN can be perplexing, clinicians should not regard the presence of body distortions and food fears as proof that these patients are unable to understand personal options and make reasoned health care decisions.

How can we determine that patients with severe anorexia nervosa possess the clinical decision-making capacity necessary to permit them to withdraw from treatment? With respect to decision-making capacity, four traditional criteria are usually applied: understanding, appreciation, ability to reason, and communication of decision [ 20 ]. In Dr. G’s estimation, confirmed in the two cases where formal independent assessment by a psychiatrist was performed, each of the patients met these criteria and was therefore capable of deciding to withdraw from conventional treatment. Alyssa’s clear, incisive writing just days before her death beautifully illustrates the insight and cognitive capacity that many patients with AN possess right up to the end of their life.

Clinical, legal, and ethical commentators in the field concur that withdrawal from treatment may be appropriate when further treatment, whether voluntary of involuntary, will provide only brief improvement, and is unlikely to offer sustained quality of life [ 21 , 22 ]. A formal assessment of decision-making capacity may help ameliorate family member fears that such an important decision is being made in an appropriate and ethical manner, especially when AN fears and distortions can seem so irrational. In addition, a formal bioethics evaluation might be valuable, but consideration of this must be balanced against most bioethicists’ lack of experience with patients who have AN, with the risk that their own innate and misguided reaction that “this patient just has to eat” could undermine a qualified patient’s decisions that are supported by their longstanding care team and family. Even medical ethicists must be wary about how their own cognitive and affective biases might influence their recommendations. [ 23 ]

Family members and carers play an immensely important role in the lives of those with AN. They bear witness to the suffering and challenges experienced by those with AN and are usually directly involved in the recovery process in multiple ways (financial/material support/behavioral support/engagement in the therapeutic work, among others). Many dread the day their child legally becomes an adult and can choose to exclude them from the details of recovery work, such that they become the financial supporters of care they are no longer privy to. The exhaustion, fear, love, and hope experienced by family members cannot be overstated. In any case where a patient meets the criteria for terminal AN, it is always preferable to include family members in the discussions and ideally come to a consensus. There may be dissent within a family about whether their loved one should be allowed to make the decision to stop fighting. These three cases illustrated how each family was meaningfully involved in the clinical discussions in the months before each patient’s death. Each family’s ultimate acceptance (through deep grief) of their son or daughter’s prognosis and choice contributed to a heightened sense of connection and love prior to death.

Acknowledging the considerable controversies surrounding MAID for patients with mental disorders [ 24 , 25 , 26 ], we also submit that patients with terminal AN who are severely physiologically compromised, and whose end-of life suffering results from both psychological and physical pain, should be afforded access to medical aid in dying in locations where such assistance has been legalized—just like other patients with terminal conditions.

AN confers an exceptionally high death rate. The lack of acceptance of terminality in AN and the absence of professionally condoned protocols and standard procedures for supporting patients and families through these phases further complicates end-of-life stages for the adults with AN who cannot keep fighting. These represent a small fraction even of the population of those with SE-AN. Per our proposed clinical characteristics, patients must not only decline further recovery-oriented treatment (which is not uncommon at times for those with AN), but also must explicitly and consistently choose to stop trying to prolong their lives, accepting that death will be the natural outcome. When a patient begins talking about the possibility of not being able to survive, every effort should be made to validate such a serious perspective and to offer an individualized and thoughtful series of harm reduction strategies and treatment options that might make life bearable. However, the process of seeking alternatives to death must not be so exhaustive as to disrespect limits the patient sets; while a family might be desperate for their loved one to try an experimental treatment or “just try going to treatment one more time,” they must ultimately accept the patient’s lack of consent for these.

Our proposed clinical characteristics of patients with terminal AN have no bearing on those who wish to keep fighting despite very long-standing and severe disease, even when their eating disorder behaviors seem incongruent with survival. Very specifically, to move toward a designation of terminal AN, an individual must express consistently that they can no longer live with their disease and will no longer maintain a minimum nutritional intake needed to support life. To be clear, each patient is unique and requires careful individual assessment and consideration as to the best approach going forward. Consistent with calls from others regarding the need for better definition and agreement regarding labeling and staging for SE-AN in general [1,2,3,4 5], the authors hope that these cases and characteristics of those with terminal AN will provide a starting point for identification, care, and further discussion. We would strongly encourage the development of expert consensus criteria and clinical guidelines endorsed by both the fields of palliative and hospice care and eating disorders. These brave, suffering individuals deserve no less.

Availability of data and materials

All narrative data and record of e-mails exchanged with patients and families throughout and after their care with the clinic are available.

Abbreviations

• Anorexia nervosa

Dr. Jennifer Gaudiani

Medical Aid in Dying

Obsessive Compulsive Disorder

• Severe and enduring anorexia nervosa

Broomfield C, Stedal K, Touyz S, Rhodes P. Labeling and defining severe and enduring anorexia nervosa: a systematic review and critical analysis. Int J Eat Disord. 2017;50(6):611–23.

Article   Google Scholar  

Treasure J, Stein D, Maguire S. Has the time come for a staging model to map the course of eating disorders from high risk to severe enduring illness? An examination of the evidence. Early Interv Psychiatry. 2015;9(3):173–84.

Touyz S, Hay P. Severe and enduring anorexia nervosa (SE-AN): in search of a new paradigm. J Eat Disord. 2015;3:26.

Wonderlich SA, Bulik CM, Schmidt U, Steiger H, Hoek HW. Severe and enduring anorexia nervosa: Update and observations about the current clinical reality. Int J Eat Disord. 2020;53(8):1303–12.

Broomfield C, Noetel M, Stedal K, Hay P, Touyz S. Establishing consensus for labeling and defining the later stage of anorexia nervosa: A Delphi study. Int J Eat Disord. 2021. https://doi.org/10.1002/eat.23600 .

Article   PubMed   Google Scholar  

Guinhut M, Godart N, Benadjaoud MA, Melchior JC, Hanachi M. Five-year mortality of severely malnourished patients with chronic anorexia nervosa admitted to a medical unit. Acta Psychiatr Scand. 2021;143(2):130–40. https://doi.org/10.1111/acps.13261 ( PMID: 33247947 ).

van Eeden AE, van Hoeken D, Hoek HW. Incidence, prevalence and mortality of anorexia nervosa and bulimia nervosa. Curr Opin Psychiatry. 2021;34(6):515–24. https://doi.org/10.1097/YCO.0000000000000739 .

Article   PubMed   PubMed Central   Google Scholar  

Nielsen S, Vilmar JW. What can we learn about eating disorder mortality from eating disorder diagnoses at initial assessment? A Danish nationwide register follow-up study using record linkage, encompassing 45 years (1970–2014). Psychiatry Res. 2021;303: 114091. https://doi.org/10.1016/j.psychres.2021.114091 .

Iwajomo T, Bondy SJ, de Oliveira C, Colton P, Trottier K, Kurdyak P. Excess mortality associated with eating disorders: population-based cohort study. Br J Psychiatry. 2021;219(3):487–93. https://doi.org/10.1192/bjp.2020.197 .

Arcelus J, Mitchell AJ, Wales J, Nielsen S. Mortality rates in patients with anorexia nervosa and other eating disorders. A meta-analysis of 36 studies. Arch Gen Psychiatry. 2011;68(7):724–31.

Smith AR, Zuromski KL, Dodd DR. Eating disorders and suicidality: what we know, what we don’t know, and suggestions for future research. Curr Opin Psychol. 2017;12(22):63–7.

Google Scholar  

Lopez A, Yager J, Feinstein RE. Medical futility and psychiatry: palliative care and hospice care as a last resort in the treatment of refractory anorexia nervosa. Int J Eat Disord. 2010;43(4):372–7.

PubMed   Google Scholar  

Westermair AL, Buchman DZ, Levitt S, Trachsel M. Palliative Psychiatry for severe and enduring anorexia nervosa includes but goes beyond harm reduction. Am J Bioeth. 2021;21(7):60–2.

Westmoreland P, Mehler PS. Caring for patients with severe and enduring eating disorders (SEED): certification, harm reduction, palliative care, and the question of futility. J Psychiatr Pract. 2016;22(4):313–20.

Bachar E, Latzer Y, Canetti L, Gur E, Berry EM, Bonne O. Rejection of life in anorexic and bulimic patients. Int J Eat Disord. 2002;31(1):43–8.

Yager J. Managing patients with severe and enduring anorexia nervosa: when is enough, enough? J Nerv Ment Dis. 2020;208(4):277–82.

Hui D, Nooruddin Z, Didwaniya N, Dev R, De La Cruz M, Kim SH, Kwon JH, Hutchins R, Liem C, Bruera E. Concepts and definitions for “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care”: a systematic review. J Pain Symptom Manag. 2014;47(1):77–89.

Altun G, Akansu B, Altun BU, Azmak D, Yilmaz A. Deaths due to hunger strike: post-mortem findings. Forensic Sci Int. 2004;146(1):35–8. https://doi.org/10.1016/j.forsciint.2004.03.022 .

Yager J, Ganzini L, Nguyen DH, Rapp EK. Working with decisionally capable patients who are determined to end their own lives. J Clin Psychiatry. 2018;79(4):17r11767.

Appelbaum PS. Intuition, self-reflection, and individual choice: considerations for proposed changes to criteria for decisional capacity. Philos Psychiatry Psychol. 2017;24(4):325–8.

Rebecca Dresser (March 1984/April, 1984) Article and Commentary on Anorexia Nervosa: Feeding The Hunger Artists: Legal Issues In Treating Anorexia Nervosa. Wisconsin Law Review, 1984, 297. https://advance-lexis-com.proxy.hsl.ucdenver.edu/api/document?collection=analytical-materials&id=urn:contentItem:3S41-1KG0-00CW-H0MM-00000-00&context=1516831 .

Hébert PC, Weingarten MA. The ethics of forced feeding in anorexia nervosa. CMAJ. 1991;144(2):141–4.

PubMed   PubMed Central   Google Scholar  

Rhodes R, Strain JJ. Affective forecasting and its implications for medical ethics. Camb Q Healthc Ethics. 2008;17(1):54–65.

Freeland A, Godkin D, Dembo J, Chan P, Knoops F, Lachmann M, Morissette L, Smith DH, Stewart DE, Trew M, Wong MR, Charbonneau M. Medical assistance in dying (MAiD) for persons whose sole underlying medical condition is a mental disorder: challenges and considerations. Can J Psychiatry. 2021;31:7067437211043315.

Sheehan K, Gaind KS, Downar J. Medical assistance in dying: special issues for patients with mental illness. Curr Opin Psychiatry. 2017;30(1):26–30.

Rooney W, Schuklenk U, van de Vathorst S. Are concerns about irremediableness, vulnerability, or competence sufficient to justify excluding all psychiatric patients from medical aid in dying? Health Care Anal. 2018;26(4):326–43.

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Acknowledgements

Dr. Gaudiani would like to acknowledge the Gaudiani Clinic’s nurse, Abby Brockman, RN, for her excellent clinical care of these patients and their families.

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Dr. Gaudiani was the internist for the three patients, drafted the article, and reviewed and approved revisions. Ms. Bogetz (deceased patient) contributed to the text and proposed criteria. Dr. Yager consulted with Alyssa and her family, contributed to the text, and provided extensive editing.

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Gaudiani, J.L., Bogetz, A. & Yager, J. Terminal anorexia nervosa: three cases and proposed clinical characteristics. J Eat Disord 10 , 23 (2022). https://doi.org/10.1186/s40337-022-00548-3

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Anorexia nervosa is currently classed as a mental disorder. It is considered as a puzzling condition, scarcely understood and recalcitrant to treatment. This paper reviews the main hypotheses relating to the aetiology of anorexia nervosa. In particular, it focuses on family and sociological studies of anorexia. By reflecting on the hypotheses provided within these domains, and on the questions that these studies leave unanswered, this paper suggests that anorexic behaviour is understandable and rational, if seen in light of ordinary moral values.

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1 Introduction

Since its first descriptions, anorexia nervosa has been considered as a mental disorder, and it is still classified as such in the DSM and the ICD (APA 2013 , pp. 329–354 and 338–345; WHO 2018 ).

There are several other forms of self-imposed starvation (hunger strike, hunger art, religious fasting) (Dresser 1984 ). Self-starvation or at least extreme forms of dieting are also central to some sports and professions (for example rock climbing, ballet, modelling in the fashion industry). None of these others have been classified as mental disorders.

One likely reason for this difference is that anorexic starvation appears difficult to understand and outright irrational. There appears to be no intelligible purpose in the anorexic starvation, no paradigm of socially intelligible values and purposes.

In this paper I argue that, contrary to what might look like, anorexia is not irrational, and it is not unintelligible either. Anorexia makes sense in light of a certain moral background. Many analyses of anorexia have missed this point or have not given it sufficient weight.

This paper will be structured as follows: in Sect.  1 I provide a brief description of anorexia. In Sect.  2 and 3 I summarise those that I believe are the most insightful accounts of anorexia. In Sects.  4 and 5 I identify some questions that these studies leave unanswered and show how certain moral beliefs and values play a key part in the genesis of anorexia. In the final section I consider a remaining question around the anorexic’s ‘real’ control over her choices. For easiness I use the pronouns ‘she’ and ‘her’, as the condition still affects mainly women (1–4% of women compared to 0.3–0.7% of men in Europe according to Keski-Rahkonen and Mustelin 2016 ), but it must be recognised that men also suffer from eating disorders, and that of course body dissatisfaction can manifest itself in different ways.

2 Anorexia Nervosa: A Brief Account

Anorexia nervosa is described as a mental disorder characterised by significantly low body weight, resulting from diet, and often accompanied by purging (self-induced vomiting, abuse of laxatives) and excessive exercise. The behaviour is triggered by the sufferer’s fear of weight gain, which often is associated with a denial of the seriousness of the emaciation (APA 2013 , pp. 329–354 and 338–345; WHO 2018 ).

Since the first descriptions, anorexia has been presented as a mental disorder.

In 1694 Richard Morton provided one of the first known descriptions of anorexia. In his Treatise of Consumptions he described anorexia as “A Nervous Atrophy, or Consumption [which is] a wafting of the body without any remarkable Fever, Cough or shortness of breath […]The Causes which dispose the Patient to this Disease, I have for the most part observed to be violent Passions of the Mind […] This Distemper as most other Nervous Diseases is Chronical, but very hard to be cured, unless a Physician be called at the beginning of it.” Footnote 1

Nearly two centuries later, in 1874, Lasegue in France named it “anorexie histerique”, and then “anorexie mentale” (Bruch 1974 , p. 213), and William Gull around the same time in the UK named it anorexia nervosa (Gull 1888 ).

These names have remained unchanged, as has the idea that the condition is a mental illness, and no somatic cause has been found for the condition (although genetic factors have been identified as correlated to higher susceptibility to anorexia—Wang et al. 2011 ; Trace et al. 2013 ; Boraska et al. 2014 ; Treasure et al. 2015 ; Bulik et al. 2016 ).

Dealing with anorexic patients is notoriously difficult. Sufferers declare that “they are just not hungry”, but they constantly fight against hunger; the anorexic keeps dieting despite the painful consequences of starvation (hypothermia, low blood pressure, often cramps, intestinal problems, insomnia, amenorrhea, just to mention a few).

To other people’s concerns, sufferers typically respond by denying that anything is wrong. Anorexics are usually secretive about their dieting and are very resistant to the idea of changing and getting help: they do not want to gain weight; they skip meals and say that they have eaten already, they claim that they are full, they might wear loose clothing to hide their emaciation and implement several strategies to keep on dieting.

Anorexics are often described as ‘difficult to handle’, ‘incomprehensible’, ‘manipulative’, ‘deceitful’, or, in the kindest accounts, as victims of a mental disorder, lacking in responsibility and agency. If they refuse help and food, they are said to be incapable of deciding, and, on this basis, they have usually been subjected to involuntary treatment notwithstanding their capacity to understand the material facts (Clough 2016 ).

Anorexia is a puzzling condition: it is scarcely understood and difficult to treat (Zipfel et al. 2015 ; Khalsa et al. 2017 ; Brockmeyer et al. 2018 ); it has the highest rates of mortality amongst mental disorders (Fichter and Quadflieg 2016 ; Arcelus et al. 2011 ) and even when not lethal, it is associated with serious morbidity.

At least since the mid 1960s, clinicians, psychologists and sociologists have formulated various hypotheses about the possible causes of anorexia.

Some consider the extreme behaviours that we see in anorexia as, quite simply, the result of a mental illness. A similar approach has been used in all the cases that have been brought before the English courts: where it had to be decided whether a person could be lawfully force-fed, or lawfully withdrawn from therapy, invariably the sufferers were said to be ‘compelled’ to refuse medical treatment and food because of the underlying mental disorder (for an account of these cases, see Giordano 2019 ).

Other scholars have proposed richer analyses of the experiences and behaviours of anorexia sufferers: they have examined the condition from a sociological perspective (as a problem related to social changes particularly after the ‘economic boom’); from a feminist perspective (as one of the consequences of patriarchal oppression or of media pressure and other forms of ‘lookism’) (Orbach 1978 , 2005 ; Dolan 1994 ); from a relational perspective as the result of dysfunctional family dynamics (Selvini Palazzoli 1963 ; Selvini Palazzoli et al. 1998 ).

From these other perspectives, anorexia is not just an intra-psychic condition, a mental health problem of the sufferer, but a relational issue, a coping mechanism in highly problematic families, or a defence mechanism in stressful social contexts: whereas the sufferer might have personal and individual vulnerabilities, the causes of her conditions are to be sought in the relationships between the sufferer and the environment (family and society).

These analyses have been more insightful and complex than those that just appeal to the psychiatric diagnosis as an explanation for people’s experiences and behaviours. However, even those are somehow incomplete. This is not to be intended as a negative criticism: it is a feature of the most promising hypotheses that they raise further interesting questions.

In the next section I summarise the main findings of these studies, and then discuss the outstanding questions that they leave unanswered.

3 The Family of the Anorexic

Since the earliest studies, it has been recognised that family dynamics are determinant in the genesis of anorexia. Anorexia is considered, under this perspective, as a coping mechanism (Selvini Palazzoli 1963 ; MacSween 1995 , ch. 2.4; Briody Mahowald 1992 ).

One of the first systematic studies of the eating-disordered family was provided by Salvador Minuchin. According to Minuchin, eating disorders appear in a particular family, which he called ‘psychosomatic family’. This family is typically characterised by rigidity, enmeshment, overinvolvement, and conflict avoidance. Although not being the sole causes for the disorder, such dynamics are, he believed, an essential element in the development of eating disorders (Minuchin 1981 ; Eisler et al. 2003 , p. 292).

Hilde Bruch, one of the pioneers of eating disorders studies and therapy, similarly argued that anorexia is a cluster of symptoms that emerge in response to dysfunctional family dynamics (Bruch 1980 , pp. 72–90).

Today it is believed that eating disorders are likely to be caused by both biological and psychosocial factors (multifactorial) (Treasure et al. 2015 ). However, the relevance of family influence on the future anorexic/eating disorders sufferer remains little disputed. Families with an anorexic member are normally described as highly problematic, manipulative and incapable of deep and stable affective bonds (Lackstrom and Woodside 1998 , pp. 107–108).

Colleagues commonly comment that we ‘must be tired of working with those people’ or ‘how do you stand it?’ This attitude reflects a general belief that eating-disordered families are manipulative and resistant to change . In some instances our colleagues see the individual with the eating disorder as a victim of her disturbed family or at the opposite extreme as a scheming manipulator who is purposefully destroying her long suffering family in her search for attention (Beaumont and Vandereycken 1998 , pp. 4–5) (my emphasis).

In a landmark study of anorexia nervosa, Mara Selvini Palazzoli, while discussing the family of the anorexic, wrote:

To the superficial observer, this may look like quite an ideal family. Generally, parents are completely dedicated to their work or to the house, they have a high sense of duty and of social and conventional norms...[T]here was, in all cases, a permanent state of underlying tension...a marked inclination to endless and unnerving arguments about the most futile issues, which is symptomatic of a hidden aggressiveness which needs an outburst...[T]he dominant figure, in the family of the anorexic, is the mother: the father is often emotionally absent...secretly or openly underestimated by his wife. Even in cases in which the father, thanks to his intolerant and dictatorial behaviour, seems to be the dominant figure , the mother wins...stubbornly playing the part of the victim ...The daughter easily becomes the victim of the mother ...the daughter is the ideal baby of an invasive, intolerant and hypercritical mother [...] (Selvini Palazzoli 1963 , pp. 61–62) (my emphasis).

A few years later, Hilde Bruch in her seminal work Eating Disorders: obesity, anorexia nervosa, and the person within (Bruch 1974 ) , reported a number of cases that appeared remarkably similar to those described by Selvini Palazzoli.

Brian Turner talked about ‘the anorexic family’ (Turner 1984 ) (rather than the anorexic person) and noted that these families are invariably characterized by contradictory requests of their daughters: on the one hand, these families value competitive success, for example in school and professional life; on the other hand, they also encourage submission rather than the autonomy and independence that are necessary to obtain the valued success (Turner 1984 , p. 192).

Since these earlier studies, there has been extensive research on anorexia and family dynamics, and all seem consistent in presenting anorexia as a coping mechanism in dysfunctional dynamics particularly ‘vertical’ dynamics (parents to children) (Witton et al. 2007 ; Vidovic et al. 2005 ; Lock and Fitzpatrick 2007 ; Tan et al. 2003 ; Dimitropoulos et al. 2015 ; Lafrance Robinson et al. 2015 ; Rienecke Hoste 2015 ; White et al. 2015 ).

Wider social contexts appear similarly problematic.

4 The Society of the Anorexic

Up until the 2000s, eating disorders were nearly exclusively found in Western countries (Gordon 1990 ) or westernized societies such as South Africa and Santiago (Chile) (Beaumont and Vandereyken 1998 ) or countries that are becoming economically emancipated, such as China (Beaumont and Vandereyken 1998 ; Selvini Palazzoli et al. 1998 ). Although the prevalence in low-income countries seems to be on the rise, eating disorders still seem to be more prevalent in high-income Western countries (Erskine et al. 2016 ; Pike and Dunne 2015 ).

For this reason, eating disorders have been regarded as ‘culturally bound syndromes’—that is, a cluster of signs and symptoms only found in a particular culture or group of cultures (Nasser 1997 , p. 14). Nasser argued that “cultural forces are responsible for this modern morbid phenomenon” (Nasser 1997 , p. 106).

There seems to be growing evidence that eating disorders affect people across the socio-economic spectrum (Mulders-Jones et al. 2017 ; Mitchison et al. 2014 ; Goeree et al. 2011 ); however, anorexia is still more prevalent in high and middle socioeconomic segments of society (Darmon 2009 ; McClelland and Crisp 2001 ).

One of the factors that explain the upsurge of anorexia in economically emancipated societies, according to a number of researchers, is the change in the social role of women. In these societies, expectations of women have, particularly since the 1900s, been conflicting (Komarovsky 1946 ; Novack & Novack 1996 ).

Mara Selvini Palazzoli writes:

Basically, nowadays the woman is asked to be beautiful, elegant and well-kept, and to spend time on her looks; this however, should not prevent her from competing intellectually with men and other women, having a career, and also romantically falling in love with a man, being tender and sweet to him, marrying him and representing the ideal type of lover-wife and oblational mother, ready to give up her degrees…to deal with nappies and domestic stuff. It seems evident that the conflict among the many demands…represents a difficult challenge for adolescents, especially the most sensitive… (Selvini Palazzoli 1963 , p. 75) .

Susie Orbach also noted that in economically emancipated societies women are typically subjected to contradictory expectations: on the one hand autonomy and independence and, on the other, femininity, nurturance, deference and dependency (Orbach 2005 ). These roles are incompatible and the crisis generated by this conflict is faced by refusing food, which is, under this perspective, a defence mechanism that enables the sufferer to remaining in a limbo between childhood and adulthood.

What happens within families thus often naturally mirrors social changes and values, which families, consciously or not, internalise and by which they begin to shape family dynamics.

MacSween similarly argued that the crisis of the anorexic is not due to her own disorders: it is rather the social world that is lacerated by conflicting expectations about the behaviour of adult women (MacSween 1995 , chs. 2, 3).

According to Crisp, faced with impossible demands, the anorexic refuses food, unconsciously refusing in this way to become a woman. She opts for a small body, where smallness is symbolic of a rejection of adulthood, with the conflicting demands it carries with itself (Crisp 1977 ). Food refusal allows the person to exercise some control over her life and over others (Lawrence 1979 , p. 93).

MacSween conducted a number of interviews with anorexic patients. She asked them why they believed they had become anorexic, and the most common answer was that they felt powerless in their environment and they needed to exercise control over at least one portion of their life; the girls were not only blaming parents; they said they were sensitive to the expectations of peers and even of their own expectations of themselves (MacSween 1995 ).

Psychological control is still today considered as one of the main causal factors of anorexia (Surgenor et al. 2002 , 2003 ; Tan et al. 2003 ; Froreich et al. 2016 ).

These accounts are illuminating but, as I anticipated earlier, they leave some questions unanswered. One of these is why we suffer, if others or society at large have unrealistic expectations of us. Answering this question requires an analysis of the moral values that underpin the relationships in these cases.

5 Why Expectations and Disappointments are a Moral Issue

In the analyses of anorexia summarised earlier, anorexia is presented as a defence mechanism against the high and contradictory demands that come either from within the family, or from society at large. The vulnerable adolescent, overwhelmed by these demands, unable to fulfil them, opts for a small body, a body that she can control and master.

One underlying assumption here is it is natural or understandable to be upset, when others set inappropriate expectations of us, and depending on what the expectations are, and who sets them, the suffering can be psychologically devastating.

But not all expectations cause suffering and upset. If I expect that, once you have read this paper, you should change your mind about anorexia, my wish might well remain unfulfilled. You have no reason to feel inadequate or bad because you are letting me down. I have no moral claim to your appreciation, and you would not let me down by disagreeing with me. My expectations would be entirely ‘my problem’, as it were, not yours.

The ‘suffering’ of the anorexic, well described in the literature, is a suffering that is linked to the sense of disappointment: the anorexic blames herself for not living up to expectations, which at times are internalised (see for example MacSween 1995 ). Others, likewise, are also disappointing, because they set unrealistic expectations and overlook the sufferers’ needs.

The root of the suffering in these dynamics is thus not the set of expectations per se, but a moral norm: the sufferer has accepted the expectation as a legitimate one, and has accepted that disappointing those who have legitimate claims is something we should feel bad about.

This might be obvious: most of us would agree that there are legitimate moral claims within close relationships, and most of us would take it as a sign of moral decency that people feel bad when they let down some significant other.

What is less obvious is that the relationship between ‘victims’ (the object of expectation) and ‘persecutors’ (the person/s who set the expectations) is circular and specular: victims and persecutors are not juxtaposed to each other (as suggested in the literature); they are one and the same.

The victim feels bad or inadequate or even guilty because she lets others down; but those who set expectations let the victim down too. The victim’s suffering speaks of the others’ expectations: it says that those expectations lead to emotional pain, and if it is true that disappointing others is wrong, then those others too can be expected to set appropriate demands, to change their expectations, to meet the sufferer’s emotional needs. But in the same way as the anorexic might be unable to fulfil others’ expectations, so might those others. In one sense, those others can also be said to be ‘victims’ of the sufferer’s unrealistic expectations.

The circularity of expectations and blame is well illustrated by the description of the ‘colleagues’ comments, offered by Beaumont and Vandereycken (cited earlier in the paper): some see the sufferer as a victim of the disturbed family; some see the anorexic as a manipulator, and the family as a victim (Beaumont and Vandereycken 1998 , pp. 4–5). Many shift from one account to the other. The clinicians capture the dynamic in place in the families observed, but are somewhat absorbed in that dynamic: rather than unpacking it, they participate in it, as evidenced by their own expressions of frustration, irritation, powerlessness, accusations…

Of course relational rupture within families is unlikely to result just from a mismatch between expectations; much can lead to feelings of disappointment and inadequacy. But suffering is only at a superficial observation a response to ‘inappropriate expectations’. The ‘sufferers’ suffer because they accept (perhaps unknowingly) a determined set of moral beliefs, according to which disappointing others is prima facie morally wrong, and interact with others accordingly. The root of the problem is not the expectations, but the moral beliefs that are intertwined with them, the moral logic that underpins the relationships.

It might be that we do have a moral obligation to meet certain expectations, particularly within close relationships; it is possible that certain moral codes have positive function in the fabric of family life or in the fabric of society. Indeed, it might be hard to challenge the moral dynamics here because the moral values at stake are perhaps commonly accepted and might serve some important function. In this sense, the continuity between ordinary moral values and those that are in place here makes it difficult to unpick and challenge these.

However, without explicit acknowledgement of the moral dynamics at stake here, it is difficult to move beyond the frustrating tensions that are well described in the literature. One might change the expectations, but without challenging the system of moral values that give shape to the dynamics of expectations/disappointments, the risk is to fall foul of the similar dynamics in some other way, or to replicate the dynamics in the clinical encounter.

There is another question that remains only partly answered in the literature.

The literature suggests that anorexia enables the sufferer to retain control over the self, through control of food intake and of her body shape, and at the same time to retain control over others (Surgenor et al. 2002 , 2003 ; Tan et al. 2003 ; Froreich et al. 2016 ).

But why does self-starvation enable such control? Again, this question cannot be answered without explicit acknowledgement of a certain moral background.

6 Starvation and Control

Gilbert Ryle wrote:

There is a doctrine about the nature and place of minds which is so prevalent among theorists and even among laymen that it deserves to be described as the official theory. […] The official doctrine, which hails chiefly from Descartes, is something like this. With the doubtful exceptions of idiots and infants in arms every human being has both a body and a mind […] Human bodies are in space and are subject to the mechanical laws which govern all other bodies in space […] But […] the workings of one mind are not witnessable by other observers; its career is private […] Underlying this partly metaphorical representation of the bifurcation of a person's two lives there is a seemingly more profound and philosophical assumption. It is assumed that there are two different kinds of existence or status. What exists or happens may have the status of physical existence, or it may have the status of mental existence (Ryle 1949 , pp. 13–14).

Different terms are used to refer to the ‘mental capacities’ or ‘mental entity’: soul, spirit, reason, intellect, will. The terms ‘soul’ and ‘spirit’ normally have a religious flavour, whereas many contemporary philosophers use the terms ‘reason’ or ‘rationality’, often considered as to be the faculty that distinguishes humans from other animals. Many influential contemporary speculations on personhood rely on a similar conception of the human being, as a being that, in its ‘complete’ or ‘higher’ form, possesses ‘mental’ capacities—self-awareness, capacity to consider itself as the same being over time, and so on (for example, Harris 1992 ; Parfit 1976 ; Engelhardt 1996 ).

It must be noted that various philosophers and philosophical schools (for example non-Cartesian monism, structuralism and post-structuralism) objected against this type of metaphysical dualism (for example, Searle 2004 ; Ayer 1990 ; Inwagen 1980 , pp. 283–99).

Despite this, the dualistic conception of the human being has been fundamental for Western thought and culture, and the association between body and baseness recurs in all eras: in the Greek thought, in Christianity, in the patristic doctrines, in Scholastic philosophy, in the different confessions of Christianity (Catholicism, Protestantism, Puritanism, Calvinism); in Humanism and Renaissance, with their flourishing of Neoplatonic and neo-Aristotelean theories, in modern philosophy and in contemporary society as well. Christianity in particular hallowed the idea that moral perfection has to be found in the detachment from the world and ascension to God, and fasting, together with other forms of self-inflicted suffering (sleeplessness, isolation and various other forms of mortification) became one of the most effective ascetic techniques since at least early Christianity (3rd and 4th Century AD) (Murchu 1983 ).

Max Weber discussed how this metaphysics and the corresponding ethic are not only religious but also secular, and discussed how pervasive they are in contemporary society (Weber 1977 ). More recently Krogovoy has shown that they are still ubiquitous, and has argued that they are likely to impact on the way people perceive their physical impulses, including hunger (Krugovoy Silver 2003 , p. 137). Fasting has been associated (and is still associated) with ideas of control and purity . Fasting is ‘detox’; it ‘cleanses’ the organism: this, of course, means that eating is always, more or less, a form of pollution. Not only a historical search for the value of religious fasting, but a simple google search will show hundreds of health farms that advertise fasting in similar terms.

This is not to suggest that anorexics fast for religious reasons (for an analysis of the phenomenological similarities and differences between anorexic starvation and other forms of starvation see Vandereycken and Van Deth 1994 , chs. 2, 11). This is instead to suggest that control of hunger can become a coping mechanism because of a certain metaphysical and moral background, which is likely to be implicitly accepted in the systems in which the disorder appears.

Not coincidentally, studies have found that typically people with anorexia are particularly sensitive to the ethic of perfectionism, discipline, austerity, hard work, spirituality, guilt, and especially the belief that the submission of the ‘physical’ to the ‘spiritual’ is a manifestation of moral integrity (for example, Lawrence 1995 , pp. 32–5; Duker and Slade 2003 ).

Control of food intake is central to eating disorders, together with compensatory practices, such as self-induced vomiting, abuse of laxatives, and diuretics. Interestingly, these are also called ‘cathartic’ practices. These are practices through which the person purifies herself of food. It is the value placed on self-control and austerity, and the role of fasting in achieving these, that seems to be the dominant background of the psychology of anorexics.

According to the literature, anorexic symptomatology also enables a level of control over the surrounding environment. Again, it is possible to understand why this is so in light of certain moral values.

Anorexia is not the only form of starvation that enables control over others: political hunger strikers use of a similar strategy, as do, more commonly, charity appeals (Burman 2007 , ch. 12). In these appeals and advertisements images of extremely emaciated people, particularly children, in extreme conditions of suffering are displayed. Their suffering elicits compassion, but it does more than this: the suffering empowers the viewers, giving them literally godly powers to sanction life or death (‘if you donate…’); but it equally disempowers the viewer, making the moral choice obvious (‘simply text…’). Who could be so callous to deny 1 lb£ that could save a life?

The displayed suffering has leverage because of the blame and guilt that are attached to the failure to do something for others, especially something that costs so little to us and that has considerable benefit for others. Thomas Szasz noted that guilty feelings are important mental constraints, and that blame and guilt are powerful instruments of social control (Szasz 1984 ). These types of call (the hunger strike, the charity appeal, and similar others) thus tap into a moral belief that is present in one form or another virtually in all moral codes: we should do something to minimise other people’s suffering, and failing to do so is condemnable. It is not hunger per se that enables control: it is the guilt and blame that it elicits that does.

Unlike other forms of self-harm (for example cutting, where the person typically hides the scars) anorexia is exhibited: the thinness is proudly worn. Whilst anorexics are usually secretive about their feeling of hunger, their food rituals, the extent of their dieting, their exercise regime, they hide to make sure that others do not interfere with their choices: their thinness, however, is clearly visible.

The impact of anorexia over the surrounding environment is strong. Anorexics elicit anger and even some degree of secret admiration (Geerling and Saunders 2015 ). Even at the death’s doors often anorexics refuse medical treatment: their stubbornness elicits frustration as well as fear, usually both in the families and in the clinical teams. Ultimately, anorexics succeed well in disempowering others.

Control of appetite, hunger, exhibition of suffering, can be a strategy of control, a defence mechanism, only in contexts in which it is accepted that we should feel sorry for other people's suffering and do something about it, and in which a moral logic is articulated around this belief. Absent the moral belief the coping mechanism would be useless.

As we have seen earlier, in systems in which this moral belief is accepted, it is unclear who is causes the suffering and who is the victim, who should do what, who is empowered and who is disempowered. The anorexic is clearly weak, emaciated and frail, and if it is true (as it probably is) that what triggers anorexia is her sense of powerlessness, she is also disempowered. So are others, though. As we have seen earlier, a similar moral belief triggers the circularity of expectations disappointments and reciprocal blame and guilt, which is likely to cause the unnerving arm wrestling between the anorexic person and others, and which is well known to families, sufferers and therapists.

Acknowledging the moral values that underpin anorexia is important because it contributes to explain one seeming paradox of anorexia: the more starvation weakens the person, the more emaciated the person is, the more she feels stronger and powerful. This also contributes to explain why the longer anorexia is unresolved, the harder it is to treat it; this contributes to explain why so called ‘food orgies’ are experienced as shameful, and why the anorexic who gives in and eats often quickly resorts to ‘cleansing’ practices: she needs to throw up and get the control back in place.

This is also important because it may provide one alternative key of action with anorexics and their families: rather than working on food intake and rehabilitation, or even on the family and social dynamics per se (on what is demanded of whom) it might be necessary to concomitantly delve deeper in the moral beliefs that render the starvation strategy functional to the systems in which the anorexic lives.

This does not pretend to be an exhaustive analysis of anorexia: it just attempts to add to the existing analyses. Other factors (psychological, genetic, cognitive, social, cultural, familial) are also likely to play a role in anorexia. Neither I am suggesting that the sufferer is conscious of the moral values and dynamics that shape anorexia, or that she fasts to become ‘morally good’ or to deliberately hurt others. What I am arguing is that it is difficult to understand how self-starvation could be a strategy to regain overall sense of control over one’s life and over others, without explicitly acknowledging the fundamental part played by moral pressure.

7 Don’t Anorexics Lack Control?

Another claim that is found in the literature is that the control that anorexics exercise is not real: it is ‘apparent’. In actual fact, anorexics are out of control.

Other groups of ‘starvers’, it might be argued, can stop when they want to: the hunger striker can stop if she wins her political battle; the dancers, models climbers, runners and so on, can change professions and adopt healthier eating patterns.

Anorexia is different, it might be believed: typically, an anorexic begins a diet, and at that stage her choices are deliberate, but then somewhere along the way she loses control of the diet, and she spirals down in the grip of the anorexia.

This argument, if true, does not invalidate the previous analysis: it might well be that the strategy is successful as a ‘defence mechanism’ for the reasons explained earlier, even if the anorexic becomes at some point unable to stop dieting.

Nonetheless, it is worth reflecting on this argument for a number of reasons. One is this: if it is true that anorexics are out of control in their continued starvation, there might be little point in working on the underpinning moral values (which I have suggested, can be important in tackling anorexia). More importantly, if the claim is true, then it is justifiable to intervene with anorexic sufferers even if this goes against their wishes (for example, to impose hospitalisation and medical treatment). Under my perspective, these interventions are not necessarily unethical, but they are not straightforward either (Giordano 2019 ).

The idea that eating disorders sufferers do not have control over their experiences and behaviour is one that has had significant pull in the literature and has taken several forms: some have for example argued that anorexia is a form of addiction, particularly as it shares important phenomenological similarities with addictions (Godier and Park 2015 ). Others have argued that anorexics lack free will: because of mental disorder, they form overvalued ideas which lead them to act in the way they do (Phillipou et al. 2017 ).

Philosophers have tried to provide various accounts of the freedom of will when people seem to deliberately engage in self-harming or seemingly irrational conduct. An analysis of the notion of free-will is beyond the remit of this paper, and I have discussed these various theories elsewhere (Giordano 2005 ). However, it is important to consider these broad concerns, at least briefly.

One of the most famous theories of autonomy, which focus on the ability to control our actions, desires and will, is that proposed by Harry Frankfurt (Frankfurt 1971 ). Frankfurt argued that we are autonomous when we exercise some control over our desires, not just over our actions. We might, for example, desire to smoke, lit up a cigarette and smoke: there is an apparent coherence between action, desires and will (I want a cigarette, I do not want to stop smoking, and I smoke). Alternatively we might have clashing desires and will: we might desire to smoke, but wish we didn’t have that desire—we might desperately want to quit perhaps, but our desire to smoke is so strong that we keep smoking. In neither case, Frankfurt argued, we are autonomous. The lack of coherence between orders of desires is a clear indication of lack of free will; but so is the coherence, when the coherence is only between ‘lower’ desires and actions.

These types of accounts of autonomy are called ‘multi-tiers’: they recognise that we have not only different types of desires (we might desire to smoke and to sleep at the same time, and cannot do both) but different levels of desires and volitions; some are more basic, and some are more important.

The smoker who wants to quit to take care of his health has two orders of desires: at one basic level he wants to smoke—he has a desire for a cigarette (first order desire). At a higher level he wants not to have that desire (second order desire). The smoker, in this account, is autonomous if and only if he can form higher order desires and if he is able to act accordingly.

If people are unable either to form second order desires, or to act accordingly, they are not autonomous. Later, a similar model has been proposed by Gerald Dworkin (Dworkin 1988 ) and David DeGrazia applied it to psychiatric conditions (DeGrazia 1994 ).

Let us apply this model to anorexia: on this account, one could say that the anorexic has a first order desire to be thin (although if one see ‘desire to control’ as the prime mover of anorexia the account might change significantly—I will come to this in one moment). She might or might not have a second order desire to get rid of that first order desire to be thin. She might want to be thin, and that is all she wants. In neither of these two cases, it could be argued, the anorexic is truly autonomous. To be autonomous, the anorexic should want to get rid of her desire for thinness, and take some steps to conform her actions to her higher order desire or volition, and show some success at this.

There are various problems with these accounts of autonomy. One is that the claim that one is not conforming to a higher order desire or preference presupposes that there is a clear hierarchy of desires and volitions, and that others can make a judgment about this. But it is unclear how we can make that judgment over other people’s desires and volitions. Jehovah’s Witnesses refuse whole blood products based on one single interpretation of the bible, not even shared by the majority in the Judeo-Christian tradition: it is not clear whether their desire or volition to obey such interpretation, which might cost one’s life, is to be placed in the first or in the second order.

A related problem is that it is not clear that the first order desire of the anorexic is to be thin : as we have seen earlier, one underlying drive may be the need for control over life and the surrounding environment (similarly, it is not clear that the first order desire of the smoker is to smoke; his desire might be to release stress, for example).

Several other groups of people (models, athletes, artists) use extreme forms of food control, and depending on how we construe the ‘first order’ desires, these might or might not fail the multi-tier autonomy test. Climbers might find themselves counting calories because one extra pound will be felt on a tough route. A few extra pounds might represent a serious risk: it is perfectly rational for the climber to want to calibrate to the gram the ratio between muscle mass and body fat. Some might regard their desires and volitions as silly, irresponsible or irrational, and others might regard their purposes as understandable and admirable. Whether or not they fail the multi-tier test of autonomy depends on what kind of items we decide to place on the first or on the second order of desires.

Moreover, conflicts between orders of desires and volitions affect us all, and none of us is immune from making choices which we know too well that are not good for us. Most likely none of us has the control of the will that some claim anorexics lack. Obese people are likely to will not to will to eat, but nobody has so far seriously suggested that the obese is affected by a mental illness and should be compulsorily hospitalised and forced to diet. Many of us might wish we had different inclinations, desires and volitions in many areas of our lives—we might wish we did wish to stay with our unfaithful partners, we might wish we did not care so much for our job as to let it impact on our health or family life, and so on.

Perhaps the multi-tiers models are correct; perhaps extreme or self-harming or risky behaviours are symptomatic of mental illness and are proof of lack of autonomy: but if we accept this, we are committing ourselves to the view that many of us, probably most of us, lack autonomy in many ways, at pain of selectively pathologising some forms of conduct over many others.

8 Conclusions

Anorexia is one of the few, and perhaps the only, form of harmful dieting practices that since at least the 1600s has been attributed to a disorder of the mind. Other potentially harmful eating practices such as intermittent fasting, nutritionally dubious diets or starvation for artistic purposes, sport-related reasons, or career purposes are not considered as mental disorders.

There might be various reasons why anorexia has been treated as a mental illness. One likely reason is that the purposes and goals of anorexics appear unintelligible and irrational. It seems difficult to contemplate that one could give up their health and life just for the sake of thinness, or that even one could bear with the distress and extreme pain caused by prolonged starvation.

I have argued that, if seen in light of a certain moral background, anorexia does not appear irrational: however, this challenges ordinary values that are widely accepted. I have suggested that the continuity between ordinary values and those expressed through anorexic behaviour somehow risks thwarting the efforts to unravel anorexia, but that without a serious reconsideration of the moral dynamics at stake in contexts where anorexia appears, it is difficult to see how anorexia can be understood. In this sense, anorexia is not a challenging condition just because it is hard to treat: it is a challenging condition because it calls us all to reflect on and question the repercussion of moral values that many of us share.

Kindly provided by Walter Vandereycken.

APA (2013) Diagnostic and Statistical Manual of Mental Disorders, DSM-5, 4th edn. APA, Washington

Google Scholar  

Arcelus J, Mitchell AJ, Wales J, Nielsen S (2011) Mortality rates in patients with anorexia nervosa and other eating disorders. A meta-analysis of 36 studies. Arch General Psychiatry 68(7):724–731

Ayer AJ (1990) Language, Truth and Logic. Penguin, London

Beaumont P, Vandereycken W (1998) Challenges and risks for health care professionals. In: Vandereycken W, Beaumont P (eds) Treating Eating Disorderes: ethical, legal and personal issues. New York University Press, New York

Boraska V, Franklin CS, Floyd JA, Thornton LM, Huckins LM, Southam L, Bulik CM (2014) A genome-wide association study of anorexia nervosa. Mol Psychiatr 19(10):1085–1094

Briody Mahowald M (1992) To be or not to be a woman: anorexia nervosa, normative gender roles, and feminism. J Med Philos 17:233–251

Brockmeyer T, Friederich HC, Schmidt U (2018) Advances in the treatment of anorexia nervosa: a review of established and emerging interventions. Psychol Med 48(8):1228–1256

Bruch H (1974) Eating disorders: obesity, anorexia nervosa and the person within. Routledge, London

Bruch H (1980) The golden cage: the enigma of anorexia nervosa. Open Books, London

Bulik CM, Kleiman SC, Yilmaz Z (2016) Genetic epidemiology of eating disorders. Cur Opin Psychiatr 29(6):383–388

Burman E (2007) Developments, child image. Routledge, London-New York

Clough B (2016) Anorexia capacity and best interest: developments in the court of protection since the Mental Capacity Act 2005. Med Law Rev 24(3):434–445

Crisp A (1977) Diagnosis and outcome of anorexia nervosa; the St George’s view. Proc R Soc Med 70:464–470

Darmon M (2009) The fifth element: social class and the sociology of anorexia. Sociology 43(4):717–733

DeGrazia D (1994) Autonomous action and autonomy-subverting psychiatric conditions. J Med Philos 19(3):279–297

Dimitropoulos G, Freeman V, Allemang B, Couturier J, McVey G, Lock J, Le Grange D (2015) Family-based treatment with transition age youth with anorexia nervosa: a qualitative summary of application in clinical practice. J Eat Disorders 3(1):1–13

Dolan B (1994) Why women? Gender issues and eating disorders, Introduction. In: Dolan B, Gitzinger I (eds) Why women? Gender issues and eating disorders. The Athlone Press, London

Dresser R (1984) Feeding the hungry artists: legal issues in treating anorexia nervosa. Wis Law Rev 2:297–374

Duker M, Slade R (2003) Anorexia and bulinia: how to help. Open University Press, Buckingham

Dworkin G (1988) The theory and practice of autonomy. Cambridge University Press, Cambridge

Eisler I, Le Grange D, Asen E (2003) Family interventions. In: Treasure J, Schmidt U, Furth VE (eds) Handbook of eating disorders. Wiley, Chichester

Engelhardt Jr HT (1996) The foundation of bioethics. Oxford University Press, New York-Oxford

Erskine HE, Whiteford HA, Pike KM (2016) The global burden of eating disorders. Curr Opin Psychiatry 29(6):346–353

Fichter MM, Quadflieg N (2016) Mortality in eating disorders—results of a large prospective clinical longitudinal study. Int J Eat Disord 49(4):391–401

Frankfurt HG (1971) Freedom of the will and the concept of a person. J Philos LXVIII 1(14):5–21

Froreich FV, Vartanian LR, Grisham JR, Touyz SW (2016) Dimensions of control and their relation to disordered eating behaviours and obsessive-compulsive symptoms. J Eat Disorders 4(1):14

Geerling D, Saunders S (2015) College students' perceptions of individuals with anorexia nervosa: irritation and admiration. J Ment Health 24(2):1–5

Giordano S (2005) Understanding eating disorders. Oxford University Press, Oxford-New York

Giordano S (2019) Anorexia nervosa: a case for exceptionalism in medical decision making. Philosophy Psychiatry Psychol 26(4):315–331

Godier LR, Park RJ (2015) Does compulsive behavior in anorexia nervosa resemble an addiction. A qualitative investigation. Fron Psychol 6:1608

Goeree MS, Ham JC, Iorio D (2011) Race, social class, and bulimia nervosa. IZA discussion paper no. 5823

Gordon R (1990) Anorexia and bulimia: anatomy of a social epidemic. Blackwell, Oxford

Gull W (1888) Anorexia nervosa. Lancet 1:516–517

Harris J (1992) The value of life. Routledge, London

Inwagen V (1980) Philosophers and the words “human body”. In: Inwagen V (ed) Time and cause: essays presented to Richard Taylor. Springer, Dordrecht

Keski-Rahkonen A, Mustelin L (2016) Epidemiology of eating disorders in Europe: prevalence, incidence, comorbidity, course, consequences, and risk factors. Curr Opin Psychiatry 29(6):340–345

Khalsa SS, Portnoff LC, McCurdy-McKinnon D, Feusner JD (2017) What happens after treatment? A systematic review of relapse, remission, and recovery in anorexia nervosa. J Eat Disorders 5(1):20

Komarovsky M (1946) Cultural contradictions and sex roles. Am J Sociol 52(3):184–189

Krugovoy Silver A (2003) Victorian literature and the anorexic body. Cambridge University Press, Cambridge

Lackstrom JB, Blake Woodside D (1998) Families, therapists and family therapy in eating disorders. In: Beaumont P, Vandereycken W (eds) Treating eating disorders: ethical, legal and personal issues. New York University Press, New York

Lafrance Robinson A, Dolhanty J, Greenberg L (2015) Emotion-focused family therapy for eating disorders in children and adolescents. Clin Psychol Psychot 22(1):75–82

Lawrence M (1979) Anorexia nervosa: the control paradox. Women Stud Int Q 2:93–101

Lawrence M (1995) The anorexic experience. The Women's Press, London

Lock J, Fitzpatrick K (2007) Evidenced-based treatments for children and adolescents with eating disorders: family therapy and family-facilitated cognitive-behavioral therapy. J Contemp Psychother 37(3):145–155

MacSween M (1995) Anorexic bodies: a feminist and social perspective. Routledge, London

McClelland L, Crisp A (2001) Anorexia nervosa and social class. Int J Eat Disord 29(2):150–156

Minuchin S (1981) Families and family theory. Routledge, London

Mitchison D, Hay P, Slewa-Younan S, Mond J (2014) The changing demographic profile of eating disorder behaviors in the community. BMC Public Health 14(1):943

Murchú DÓ (1983) Early christian asceticism and its relevance today. Irish Theol Q 50(2–4):83–117

Mulders-Jones B, Mitchison D, Girosi F, Hay P (2017) Socioeconomic correlates of eating disorder symptoms in an australian population-based sample. PLoS ONE 12(1):e0170603

Nasser M (1997) Culture and weight consciousness. Routledge, London

Novack LL, Novack DR (1996) Being female in the eighties and nineties: conflicts between new opportunities and traditional expectations among white, middle class, heterosexual college women. Sex Roles 35(1–2):57–77

Orbach S (1978) Fat is a feminist issue. Paddington Press, New York

Orbach S (2005) Hunger strike, the anorexic’s struggle as a metaphor for our age, 2nd edn. Karnac Books, London

Parfit D (1976) Personal identity. In: Glover J (ed) The philosophy of mind. Oxford University Press, Oxford

Phillipou A, Mountjoy RL, Rossell SL (2017) Overvalued ideas or delusions in anorexia nervosa? Aust Nz J Psychiat 51(6):563–564

Pike KM, Dunne PE (2015) The rise of eating disorders in Asia: a review. J Eat Disorders 3(1):33

Rienecke Hoste R (2015) Incorporating family-based therapy principles into a partial hospitalization programme for adolescents with anorexia nervosa: challenges and considerations. J Fam Ther 37(1):41–60

Ryle G 1978(1949) The concept of mind. Penguin, London

Searle JL (2004) Mind: a brief introduction. Oxford University Press, New York

Selvini Palazzoli M (1963) Anoressia mentale, dalla terapia individuale alla terapia familiare. Feltrinelli, Milano

Selvini Palazzoli M, Cirillo S, Selvini M, Sorrentino AM (1998) Ragazze anoressiche e bulimiche, la terapia familiare. Raffaello Cortina Editore, Milano

Surgenor LJ, Horn J, Plumridge EW, Hudson SM (2002) Anorexia nervosa and psychological control: a reexamination of selected theoretical accounts. Eur Eat Disord Rev 10(2):85–101

Surgenor LJ, Horn J, Hudson SM (2003) Empirical scrutiny of a familiar narrative: sense of control in anorexia nervosa. Eur Eat Disord Rev 11(4):291–305

Szasz T (1984) The myth of mental illness. Paladin, London

Tan JOA, Hope T, Stewart A, Fitzpatrick R (2003) Control and compulsory treatment in anorexia nervosa: the views of patients and parents. Int J Law Psychiat 26(6):627–645

Trace SE, Baker JH, Peñas-Lledó E, Bulik CM (2013) The genetics of eating disorders. Annu Rev Clin Psychol 9(1):589–620

Treasure J, Zipfel S, Micali N, Wade T, Stice E, Claudino A, Shmidt U, Frank KG, Bulik CM, Wentz E (2015) Anorexia nervosa. Nat Rev Dis Primers 1(1):150–174

Turner BS (1984) The body and society: explorations in social theory. Blackwell, Oxford

Vidovic V, Jure V, Begovac I, Mahnik M, Tocilj G (2005) Perceived family cohesion, adaptability and communication in eating disorders. Eur Eat Disord Rev 13(1):19–28

Vandereycken W, Van Deth R (1994) From fasting saints to anorexic girls: the history of self-starvation. Athlone Press, London

Wang K, Zhang H, Bloss CS, Duvvuri V, Kaye W, Schork NJ, Betterrini W, Hakonarso H (2011) A genome-wide association study on common SNPs and rare CNVs in anorexia nervosa. Mol Psychiatr 16(9):949–959

Weber M (1977) The Protestant Ethic and the Spirit of Capitalism. George Allen & Unwin, London

White H, Haycraft E, Madden S, Rhodes P, Miskovic-Weatley J, Wallis A, Kohn M, Meyer C (2015) How do parents of adolescents patients with anorexia nervosa interact with their child at mealtimes? A study of parental strategies used in the family meal session of family based treatment. Int J Eat Disord 48(1):72–80

WHO – World Health Organisation (2018) ICD-11 International Classification of Diseases 11th Revision . The global standard for diagnostic health information https://icd.who.int/en

Witton NS, Leichner P, Sandhu-Sahota P, Filippelli D (2007) The research directions survey: patient and parent perspectives on eating disorder research. Eat Disord 15(3):205–216

Zipfel S, Giel KE, Bulik CM, Hay P, Schmidt U (2015) Anorexia nervosa: aetiology, assessment, and treatment. Lancet Psychiat 2(12):1099–1111

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Acknowledgements

I wish to acknowledge Paolo Corsico for his invaluable help with the research contained here. I also wish to thank Professor Jennifer Radden for her continued support for my work.

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Giordano, S. Secret Hunger: The Case of Anorexia Nervosa. Topoi 40 , 545–554 (2021). https://doi.org/10.1007/s11245-020-09718-x

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Outcome of Anorexia Nervosa: A Case-Control Study

• Patrick F. Sullivan , M.D., F.R.A.N.Z.C.P. ,
• Cynthia M. Bulik , Ph.D. ,
• Jennifer L. Fear , M.A. , and
• Alison Pickering , B.A.

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OBJECTIVE: Although there have been many studies of the outcome of anorexia nervosa, methodological weaknesses limit their interpretation. The authors used a case-control design to try to improve knowledge about the outcome of anorexia nervosa. METHOD: All new female patients referred to an eating disorders service between Jan. 1, 1981, and Dec. 31, 1984, who had probable or definite anorexia nervosa were eligible for inclusion. Of these women, 86.4% (N=70) were located and agreed to participate. The comparison group (N=98) was a random community sample. All subjects were interviewed with a structured diagnostic instrument. RESULTS: A minority of the patients (10%) continued to meet the criteria for anorexia nervosa a mean of 12 years after initial referral. Even among those who no longer met these criteria, relatively low body weight and cognitive features characteristic of anorexia nervosa (perfectionism and cognitive restraint) persisted. The rates of lifetime comorbid major depression, alcohol dependence, and a number of anxiety disorders were very high. CONCLUSIONS: In the managed care/brief treatment era, therapeutic approaches with an excessive focus on weight gain that neglect the detection and treatment of associated psychological features and comorbidity may be inappropriate. Anorexia nervosa is a serious psychiatric disorder with substantial morbidity. (Am J Psychiatry 1998; 155:939–946)

There have been many studies of the outcome of anorexia nervosa, and high-quality reviews are available ( 1 – 7 ). Although the majority of individuals studied no longer have anorexia nervosa at the time of follow-up ( 6 , 7 ), substantial psychiatric comorbidity is common ( 5 ), and the risk of a fatal outcome is considerable ( 8 – 10 ). Taken together, these studies have demonstrated clearly that anorexia nervosa is a serious psychiatric disorder with substantial morbidity and mortality.

As has been noted ( 1 ), however, interpretation of many of the individual studies of the outcome of anorexia nervosa is hampered by numerous methodological weaknesses. These weaknesses include small sample sizes, poor case definitions, and unstandardized and unstructured diagnostic methods. An additional and critical weakness is the general lack of control or comparison groups. These methodological limitations constrain our knowledge of “recovery” from anorexia nervosa and our interpretation of the rather high lifetime prevalence of comorbid diagnoses that is often observed. Consequently, although we may have a general impression of the outcome of anorexia nervosa and its mortality rates, many important details remain obscure.

The purpose of this study was twofold. First, we identified, located, and interviewed—using clear diagnostic definitions and a structured method—women who had been referred for treatment of anorexia nervosa an average of 12 years earlier in order to ascertain their intermediate to long-term outcome. Second, using a case-control design, we compared the outcome of these patients with anorexia nervosa to the status of a random community comparison group screened for the presence of anorexia nervosa.

The purpose of this study was to assess the outcome of anorexia nervosa across a number of domains. The design was two-pronged: a historical observational cohort study, in which women with anorexia nervosa (N=70) who had been assessed or treated more than a decade earlier were located and followed up, paired with a case-control study (N=98 in the comparison group). In conjunction with case-control comparisons, the magnitude and significance of outcomes such as depression and functional impairment could be assessed. The study was reviewed and approved by the local ethics committee, and all subjects provided written informed consent.

Potential cases of anorexia nervosa were drawn from the records of the Eating Disorders Service at The Princess Margaret Hospital in Christchurch, New Zealand. This service has been in existence since 1978 and remains the sole specialist assessment and treatment service for eating disorders in the South Island of New Zealand. Any woman assessed or treated by the Eating Disorders Service for the first time from Jan. 1, 1981, to Dec. 31, 1984, was eligible for inclusion in this study. Specifically, this refers to patients admitted, outpatients first seen, and patients assessed during this time period. We studied newly referred patients in order to minimize an important bias (“the clinician's illusion” [11]), which would have severely limited the generalizability of our findings. If we had studied the total set of women with anorexia nervosa, we would have oversampled individuals with chronic anorexia; if our study group had had relatively more individuals with chronic anorexia nervosa, our results would have been less pertinent to the clinical question of the likely prognosis of a patient at the point of referral.

The hospital record of every newly referred patient during 1981–1984 was independently reviewed and abstracted (using a standardized form) by two trained medical students under the close supervision of one of us (P.F.S.). Following a consensus conference between the two raters and the supervisor, potential “cases” were defined as anyone first seen by the Eating Disorders Service in 1981–1984 who met the DSM-III or DSM-III-R criteria for definite or probable anorexia nervosa.

To locate potential cases of anorexia nervosa, we used a variety of methods. First, we arranged for a computerized search of the New Zealand mortality database to identify any women who might have been “case” subjects who had died. Second, we used a wide variety of sources to attempt to obtain a current address and telephone number for each potential anorexia nervosa subject. These sources included the addresses listed in the hospital case notes (e.g., for the person, parents, and general practitioner), all New Zealand telephone directories, and the electoral roll directories. For women not identified through these means, we arranged for a search of the New Zealand Register of Births, Deaths, and Marriages to identify the names of any women who might have married and changed their names. Finally, we also checked the telephone directories and electoral rolls for the major metropolitan areas in Australia.

To obtain a community sample of adult women, we randomly selected individuals from the 1993 Christchurch electoral rolls. All adults are required by New Zealand law to register for the electoral roll, and 95.5% of the adult population was in fact registered ( 12 ). The comparison group was restricted to women in the same age band as the women with anorexia nervosa (i.e., current age=23–45 years). Three women with a history of anorexia nervosa or subthreshold anorexic symptoms were excluded.

Data Collection Protocol

All potential anorexia nervosa subjects who were located were sent a letter from the consultant psychiatrist who had been on the Eating Disorders Service in the early 1980s. This letter described the study and invited participation. The letter was followed a few days later by a telephone call from the study interviewer (A.P.). She explained the study further and attempted to obtain consent for a personal interview. The interview was performed face-to-face with 91.4% of the patients, and the remainder were interviewed by telephone when geographic distance was prohibitive (i.e., residence in Australia, England, or North America).

All potential comparison subjects were sent a letter describing the study and requesting participation. This was followed a few days later by a telephone call from the study interviewer, who attempted to obtain consent for a personal interview.

The study interviewer had previously completed more than 500 structured psychiatric interviews, which included over 100 with the instrument used in this study. She underwent additional training to prepare her for interviewing women with eating disorders and was directly supervised by P.F.S. She met with the investigators on a weekly basis to discuss progress in the study and to clarify any uncertainties that had arisen. Because of the nature of the contact protocol, it was impossible for the interviewer to be blind to case-control status.

The subject interview had several components. The first component was a standardized and structured diagnostic interview, the Diagnostic Interview for Genetic Studies ( 13 , 14 ), which yields lifetime and current DSM-III-R diagnoses of mood disorders, substance use disorders, anxiety disorders, eating disorders, childhood conduct disorder, and adult antisocial personality. The Diagnostic Interview for Genetic Studies also collects information about demo~graphic characteristics, medical and psychiatric history, psychotic symptoms, the temporal course of comorbid disorders, and suicidal behavior. We modified the instrument to obtain more detailed information about eating disorder symptoms and their time course (using a life history chart to facilitate active recall) and added sections on childhood overanxious disorder and separation anxiety disorders (modified from versions by K.R. Merikangas, unpublished). In addition, the interviewer rated each subject's current “global” social and occupational functioning (Global Assessment of Functioning Scale) (15 and DSM-III-R).

The second component was a booklet that contained several self-report inventories. In this article, we report the results from the first five scales (drive for thinness, bulimia, body dissatisfaction, perfectionism, and interoceptive awareness) of the Eating Disorders Inventory ( 16 , 17 ) and the cognitive restraint, disinhibition, and hunger scales of the Three-Factor Eating Questionnaire ( 18 ).

All available medical records were requested for any subject who had had a psychiatric hospitalization or a medical admission or specialist referral that might have been related to an eating disorder (e.g., an outpatient amenorrhea investigation).

Psychiatric Diagnoses

The completed Diagnostic Interview for Genetic Studies interviews were reviewed independently by two of us (P.F.S. and C.M.B.), who were blind to subjects' case or control status while doing the reviews. The eating disorders section was reviewed after diagnoses for all other sections had been recorded in order to minimize any tendency to assign diagnoses with reference to case-control status. Using all available information, the two of us independently assigned psychiatric diagnoses according to DSM-III-R criteria. The diagnostic standard was conservative: no diagnosis was given unless there was clear, positive supporting evidence, and none was given if there was substantial disagreement between the two diagnostic raters.

The lifetime prevalence of most DSM-III-R psychiatric syndromes in the community comparison group was comparable to that in a much larger study in Christchurch that used electoral roll sampling ( 12 ). However, because the Diagnostic Interview for Genetic Studies was overly sensitive to diagnosing lifetime major depression (e.g., lifetime prevalence in the comparison group was 53.0%), we made the DSM-III-R criteria more stringent by requiring functional impairment plus a minimum 4-week duration of symptoms ( 19 ).

Statistical Analysis

We considered the outcome of anorexia in three domains. The first outcome domain concerned eating-disorder-related psychopathology and consisted of the follow-up diagnoses of anorexia nervosa and bulimia nervosa plus self-reported body mass index and psychometric scores (Eating Disorders Inventory and Three-Factor Eating Questionnaire). The second outcome domain was other lifetime psychiatric diagnostic comorbidity (i.e., mood, anxiety, and substance use disorders). The third outcome domain was global social and occupational functioning (Global Assessment of Functioning Scale) as an aggregate or summation measure of the functioning of these women. Since these measures were also obtained in a random community sample, we were able to assess their significance and magnitude.

We used simple statistics (chi-square test, analysis of variance, and analysis of covariance) ( 20 ) to compare the subjects in the anorexia group with those in the community group. All p values are two-tailed. Assuming alpha=0.05 and beta=0.80, these comparisons could detect differences in continuous variables of medium magnitude (d=0.44) and differences in discrete variables of small to medium magnitude (w=0.21) ( 21 ).

Of the referrals between Jan. 1, 1981, and Dec. 31, 1984, 239 records were abstracted because they contained some evidence of an eating disorder. Upon review, 89 individuals were thought to have had definite or probable anorexia nervosa. Of these 89 potential subjects, one person had died, three could not be located, eight did not give full consent, and upon interview and diagnostic review, seven clearly had never met criteria for anorexia nervosa. (The single death was that of a woman in her early 20s who had committed suicide while hospitalized for the treatment of severe anorexia nervosa. She was notable for her high impulsiveness and rather extreme reluctance to engage in treatment.) Therefore, personal interviews with 70 women were obtained, all of whom met lifetime DSM-III-R criteria for anorexia nervosa. The participation rate for persons with anorexia was thus 86.4% (70/[89–1–7]). For the comparison group, 111 women were approached; 10 refused and three were excluded because of the presence of subthreshold anorexic symptoms. Personal interviews were obtained with 98 women, none of whom met lifetime DSM-III-R criteria for anorexia nervosa. The participation rate for the comparison group was 91.0% (101/111). The participation rates for the anorexic subjects and the comparison subjects were not statistically different (χ 2 =1.01, df=1, p=0.32) and were somewhat greater than the rate in the large community survey that used the Christchurch electoral rolls ( 12 ).

In comparison with 49 other studies of the outcome of anorexia nervosa ( 10 ), the total number of cases (N=70) was larger than the norm (median=48, mean=66), and the participation rate (86.4%) was similar (median=89%, mean=84%). However, the participation rate of the comparison group places the latter figure in context, since potential comparison subjects were as likely as potential subjects with anorexia not to participate in the study. The mean age at onset of anorexia in our study group ( table 1 ) was similar to that in four large outcome studies ( 8 , 22 – 24 ). The follow-up interval in our group (i.e., time from initiation of treatment to outcome interview; mean=12.0 years, range=9.8–14.4) was greater than the median (7.2 years) or the mean (9.1 years) in the 49 other studies of the outcome of anorexia nervosa.

Despite our attempt to match case subjects and comparison subjects by age banding, the mean age of the comparison group was significantly greater than that of the anorexia group ( table 1 ). Because many of the outcomes we studied are influenced by age (e.g., marriage and risk of depression), we incorporated age at interview as a covariate in the analyses that follow. The anorexia group and the comparison group were otherwise similar in demographic characteristics, with the exception of marital status; even when we controlled for current age, the anorexic subjects were markedly less likely to have ever been married.

The single death in the anorexia group was that of the woman who had committed suicide while hospitalized for treatment of anorexia nervosa. Thus, the crude mortality rate was 1.4%, or 0.0017% per person-year of follow-up.

Table 2 presents data on the first outcome domain. By definition, all members of the anorexia group and none of the comparison group met the criteria for lifetime anorexia nervosa. At the outcome interview, 15.7% of the anorexia group continued to meet criteria for full syndromic or subthreshold anorexia nervosa. Over one-half the anorexia group had met criteria for lifetime bulimia nervosa—a far greater proportion than in the comparison group—and 15.7% of the anorexia group and none of the comparison group continued to meet criteria for full syndromic or subthreshold bulimia nervosa. Only one individual had both current anorexia nervosa and bulimia nervosa.

There were profound differences between the anorexia patients and the comparison group on all of the body mass index variables. Some of these differences followed from the case and comparison group definitions (e.g., lowest adult body mass index). However, even when we controlled for the presence of current anorexia nervosa, there were marked differences between the anorexic subjects and the comparison group in current body mass index and reported ideal body mass index. For example, the mean body mass index at interview for the subjects with current anorexia nervosa was 16.9 (SD=1.1), and for the subjects without current anorexia nervosa it was 20.4 (SD=1.8).

On the Eating Disorders Inventory and Three-Factor Eating Questionnaire, there were significant differences between the anorexia group and the comparison group in drive for thinness and perfectionism on the former and in cognitive restraint and hunger on the latter. These differences were statistically significant when we controlled for the presence of current anorexia nervosa. The anorexia group was characterized by higher drive for thinness, perfectionism, and cognitive restraint and by lower hunger.

Table 3 presents the DSM-III-R/Diagnostic Interview for Genetic Studies diagnoses of the anorexia group and the comparison group. There were significant differences across groups in the lifetime prevalence of any mood, anxiety, and substance use disorders. In particular, major depression, alcohol dependence, obsessive-compulsive disorder, panic disorder, separation anxiety disorder, and overanxious disorder were significantly more common in the anorexia group than in the comparison group.

The mean Global Assessment of Functioning Scale score of the anorexia group (68.9, SD=15.9) was significantly worse than that of the comparison group (80.3, SD=10.0) (F=36.0, df=1,166, p<0.001). Since this score is an aggregate measure that is influenced by any current disorder, we refined this analysis by performing a multiple regression with Global Assessment of Functioning Scale score as the dependent variable and the independent variables of case-control status, age, and the presence of any current eating, mood, anxiety, or drug/alcohol dependence disorder. After controlling for all of these covariates, we found that the anorexia group had significantly worse Global Assessment of Functioning Scale scores than the comparison group (F=9.70, df=1,161, p=0.002).

In this study, we investigated the outcome of 70 women who had been referred for treatment of anorexia nervosa a mean of 12.0 years earlier (a mean of 15.4 years after onset of the disorder) across three domains. The study had several important methodological features that facilitate its interpretability and that allow a more accurate portrait of the outcome of anorexia nervosa. Although these features have been used in prior studies of the outcome of anorexia nervosa, to our knowledge all three have not been used previously. First, we studied individuals at the point of first referral to a specialist treatment facility, avoiding a sample artifactually enriched by individuals with chronic anorexia nervosa and thereby yielding data directly applicable to the clinically important question of an individual's prognosis at the point of first referral. Second, as has been advocated ( 1 , 5 , 7 ), we paid careful attention to a number of procedural details, including case ascertainment, tracing, interviewing, and the use of structured diagnostic interviews. Of note, the participation rate of women with anorexia was typical of that in other studies of the outcome of anorexia nervosa and not significantly different from that of the comparison group. Third, the interpretation of these data was facilitated by the simultaneous recruitment of a random community comparison group. Only a minority of previous studies of the outcome of anorexia nervosa have included comparison groups ( 25 – 30 ), and in most of these studies, the comparison group was not randomly sampled nor necessarily representative of the general population. Our comparison group was comparable to the anorexia group in terms of ethnicity and occupation and appeared to have lifetime prevalences of many psychiatric disorders in the ranges of those reported in several community samples of studies conducted in Christchurch. Current age was an important exception: despite our use of age banding, the anorexic subjects were significantly younger than the comparison subjects. We controlled for this difference by including current age as a covariate in all subsequent analyses.

Eating Disorder Outcomes

The first outcome domain pertained to mortality and eating-disorder-related psychopathology. There was only one death in the group studied. A meta-analysis estimated the risk of mortality in anorexia nervosa to be 5.6% per decade of follow-up ( 10 ). The observed mortality was thus slightly less than expected but consistent with a trend toward decreased mortality in more recent treatment cohorts ( 7 ).

More than a decade after first referral for treatment, a substantial fraction of the study group continued to meet the criteria for anorexia nervosa (10.0%) or a subthreshold variant (5.7%). Strict comparison with prior studies is made difficult by the varying study designs and different diagnostic and outcome definitions that were used. Prior studies of the outcome of anorexia nervosa that used operationalized diagnostic criteria after a decade or more of follow-up have reported persistent anorexia nervosa in approximately 11% ( 29 ) to 17% ( 31 ) of subjects. When less precise definitions have been used, chronic symptoms, a poor outcome, or an unimproved clinical state has been reported in from 16% ( 32 ) to over 50% ( 33 ) of subjects. Thus, our finding is generally consistent with prior reports: chronic anorexic symptoms appear to persist in a sizable minority of patients even after a relatively long period of follow-up.

Of particular interest was our finding that the anorexic subjects and the comparison group differed in several body mass index, Eating Disorders Inventory, and Three-Factor Eating Questionnaire variables. The anorexia group had a markedly lower body mass index than the comparison group and reported an ideal body mass index that was both lower than that of the comparison group and fairly close to their own current body mass indexes. These data suggest—even after control for age and the presence of current anorexia nervosa—that anorexia patients are distinguished by a persisting focus on thinness and by maintaining a relatively low body weight. Self-reported higher scores on Eating Disorders Inventory drive for thinness, higher scores on Three-Factor Eating Questionnaire cognitive restraint, and lower scores on Three-Factor Eating Questionnaire hunger are consistent with this finding.

Although most of the subjects in our anorexia group no longer met the criteria for anorexia nervosa in terms of low weight and amenorrhea, body shape and weight concerns clearly persisted in a manner that was distinct from the comparison group. Maintaining the “anorectic stance” ( 34 ) over time is highly demanding and subjects the individual to substantial scrutiny and both wanted and unwanted attention. At some point, the primary and secondary gain of anorexic symptoms may become not worth the effort. A common pathway in recovery from anorexia nervosa may be for an individual's eating to normalize somewhat, with a subsequent increase in body weight, perhaps even into the low normal or normal range. This allows the individual to retain the perceived benefits of a relatively low body weight without the costs of maintaining an extremely low body weight in the anorexic range. The self-report results (higher Eating Disorders Inventory drive for thinness score and Three Factor Eating Questionnaire cognitive restraint score) suggest that maintenance of low body weight in otherwise “recovered” patients had a conscious or intentional component. The lower Three-Factor Eating Questionnaire hunger scores could reflect either conscious underreporting or biological alterations in appetite and satiety ( 35 ) that were consequences of anorexia nervosa or that existed premorbidly. Differences in satiety and appetitive mechanisms in women with eating disorders remain important empirical questions.

Perfectionist traits are frequently observed during the acute phase of anorexia nervosa ( 36 ) and may play a causal role in its development ( 37 ). Our findings indicate that high perfectionism is not restricted to the acute phase of the illness. Even after controlling for the presence of a current eating disorder, we found that anorexic subjects had markedly higher Eating Disorders Inventory perfectionism scores than the comparison group. These results are consistent with those of Srinivasagam et al. ( 38 ), who found that perfectionism scores were significantly higher among individuals with anorexia nervosa who had been weight-recovered for more than 1 year than among control subjects. Our findings suggest that this trait persists even longer. Bastiani et al. ( 36 ) hypothesized that perfectionism may reflect one dimension of the rigidity and obsessionality that contribute to vulnerability to developing anorexia nervosa, resistance to treatment, and likelihood of relapse.

A substantial proportion of the study group developed bulimia nervosa at some point over the follow-up period, although this persisted through to the follow-up interview in only a minority. The proportion who developed bulimia nervosa was grossly greater among the anorexic subjects than in the comparison group, consistent with epidemiological evidence that anorexia is a strong risk factor for bulimia ( 39 ). We investigated the phenomenon of “crossover” from anorexia nervosa to bulimia nervosa in this group in a prior report ( 40 ). Briefly, we found that most individuals developed bulimia nervosa within 2 years of the onset of anorexia nervosa and that the development of bulimia nervosa was unusual more than 5 years after the onset of anorexia nervosa. Using Cox proportional hazard modeling with time-dependent covariates, we determined that “recovery” from anorexia nervosa was a potent risk factor (risk ratio=2.8) for this transition. Conversion from anorexia nervosa to bulimia nervosa may represent a way of retaining eating disorder pathology in a manner less evident to family, friends, and health care workers (i.e., to move from a “visible” to an “invisible” eating disorder).

Psychiatric Diagnostic Comorbidity

A key concern is whether the comparison group was representative of the local populace with respect to the probability of having lifetime psychiatric disorders. Comparison data are available from a randomized community survey based on census data of 1,498 adults conducted in Christchurch (with use of DSM-III and the Diagnostic Interview Schedule [DIS]) ( 41 ) and from 1,028 adults randomly selected from the Christchurch electoral rolls as the control group in a suicide study (with use of DSM-III-R and the Structured Clinical Interview for DSM-III-R [SCID]) ( 12 ). In our comparison group, the lifetime prevalence estimates for most disorders appear to be comparable to the community lifetime prevalences ( 41 ). There were two exceptions: the lifetime prevalence of major depression (by criteria more stringent than those in DSM-III-R) was greater in our comparison group (35.7%) than in the DIS-based community survey (16.3%) ( 41 ). Since the DIS may underdiagnose major depression ( 42 ), it is notable that a SCID-based survey found the lifetime prevalence of major depression in women aged 23–46 years to be 47.1% (A. Beautrais, personal communication, June 1996). The second exception was the lifetime prevalence of alcohol dependence, which was higher in our comparison group (10.2%) than in one community survey (6.1%) ( 41 ). For depression and alcohol dependence, the higher prevalences in our comparison group imparted a conservative bias by making it harder to detect a significant difference between anorexic subjects and the comparison group.

The lifetime prevalences of major depression, alcohol dependence, and, notably, several anxiety disorders (obsessive-compulsive, panic, separation anxiety, and overanxious disorders) were significantly greater in the anorexia group than in the comparison group. The finding of a high prevalence of lifetime major depression is in accord with other studies that used structured interviews ( 43 , 44 ) and with those that also used a control group ( 28 , 29 , 45 ). In these studies, lifetime prevalences of major depression ranged from 40% to 100%. The association of anorexia nervosa with mood disorders has intrigued researchers for decades ( 46 ) and has led to suggestions that anorexia nervosa is a forme fruste of affective illness. This appears to be unlikely; with stringent definitions of major depression such as those in our study, the lifetime prevalence of major depression is far less than 100%. However, anorexia nervosa is likely to be a heterogeneous condition, and affective illness may be etiologically related to it in a subset of subjects. Alternatively, the association between anorexia nervosa and affective illness may represent confounding, with both conditions resulting from common genetic or environmental causes.

Halmi et al. ( 29 ) expected to—but did not—find a greater lifetime prevalence of alcohol dependence in their follow-up sample of anorexic subjects than in control subjects. In our study, over one-fourth of the anorexia group reported a lifetime history of alcohol dependence. The structured diagnostic interview that we used was designed, in part, for genetic studies of alcoholism and has a very careful assessment of alcohol use. Our finding, which is in accord with clinical experience, may have resulted from the greater sensitivity of the Diagnostic Interview for Genetic Studies. This finding is also plausible and may represent maladaptive anxiolytic pharmacotherapy (“self-medication”) given the very high prevalence of anxiety disorders or more general and persistent difficulties in coping with life.

A striking finding in our study was the very high lifetime prevalence of several anxiety disorders. Prior reports have noted significantly elevated prevalences of obsessive-compulsive disorder ( 28 , 29 , 45 ), panic disorder ( 28 ), and social phobia ( 28 , 29 ) (the latter was not found in the present study). However, the two childhood anxiety disorders (separation anxiety and overanxious disorders) were markedly more prevalent in the anorexia group than in the comparison group. We are aware of no other case-control comparisons of these disorders in anorexia nervosa. In a prior report ( 47 ), we compared the lifetime prevalences of several anxiety disorders across four groups (case subjects and control subjects from this study plus clinical samples of women with bulimia nervosa and major depression). In multivariate analyses, anorexia nervosa appeared to be particularly associated with obsessive-compulsive disorder (odds ratio=11.8, p=0.03) and overanxious disorder (odds ratio=13.4, p=0.003). Given these findings, it appears more likely that anorexia nervosa may be closely allied to certain anxiety disorders than to affective disorders.

Global Functioning

Although worse overall or global functioning in samples treated previously for anorexia nervosa has been reported (e.g., reference 30), the studies have typically not controlled for additional psychopathology whose symptoms often impair functioning. In contrast to the comparison group, and after control for the presence of current eating, mood, anxiety, and drug/alcohol dependence disorders, our anorexia group still had significantly worse Global Assessment of Functioning Scale scores. This finding suggests that women referred for treatment of anorexia nervosa many years earlier remain notable for worse global functioning, even taking into account their high prevalence of chronicity, crossover to bulimia nervosa, and comorbid psychiatric disorders.

Limitations and Implications of the Study

Our findings must be interpreted in the context of three potentially important limitations. First, although this was the only practical design available to us, we studied a group of subjects who were referred for treatment, and important but unknown biases may have distinguished these individuals from the wider population from which they were drawn. Second, we relied heavily on retrospective self-report. Although we used a structured diagnostic interview supplemented by medical records when available, recall bias could have altered our results, especially if it was more prominent in the anorexia group than in the comparison group. Third, the study interviewer was, unavoidably, not blind to case-control status. We attempted to compensate for this by a blind diagnostic review (of the non-eating-disorders sections of the Diagnostic Interview for Genetic Studies) by two clinicians and the use of a conservative diagnostic standard.

In our study group, as in many others, only a minority of the subjects continued to meet the criteria for anorexia nervosa more than a decade after initial referral. However, even in recovery (i.e., when the criteria for anorexia nervosa were no longer met), relatively low body weight and certain cognitive features (perfectionism and cognitive restraint) tended to persist. Comorbid major depression, alcohol dependence, and a number of anxiety disorders were very frequent. In the managed care/brief treatment era, therapeutic approaches with an excessive focus on weight gain that neglect the detection and treatment of associated attitudes and comorbidity may be inappropriate. Anorexia nervosa is a serious psychiatric disorder with substantial morbidity.

Received Sept. 11, 1997; revision received Dec. 31, 1997; accepted Feb. 9, 1998. From the Department of Psychiatry, Virginia Institute for Psychiatric and Behavioral Genetics, Virginia Commonwealth University; the New Zealand Health Information Service, Wellington; and the University Department of Psychological Medicine, Christchurch School of Medicine, Christchurch, New Zealand. Address reprint requests to Dr. Sullivan, Department of Psychiatry, Virginia Institute for Psychiatric and Behavioral Genetics, P.O. Box 980126, Richmond, VA 23298-0126; [email protected] (e-mail). Supported by the Canterbury Medical Research Foundation and a research training fellowship from the New Zealand Health Research Council to Dr. Sullivan. The authors thank Prof. Peter Joyce; Drs. Janice McKenzie, J. Elisabeth Wells, Kim McFadden, and Ingrid Jolley; and the study participants for their assistance.

1 Hsu LKG: Outcome of anorexia nervosa: a review of the literature (1954–1978). Arch Gen Psychiatry 1980 ; 37:1041–1046 Crossref , Medline ,  Google Scholar

2 Schwartz DM, Thompson MG: Do anorectics get well? current research and future needs. Am J Psychiatry 1981 ; 138:319–323 Link ,  Google Scholar

3 Swift WJ: The long-term outcome of early-onset anorexia nervosa. J Am Acad Child Psychiatry 1982 ; 21:38–46 Crossref , Medline ,  Google Scholar

4 Steinhausen HC, Glanville K: Follow-up studies of anorexia nervosa: a review of research findings. Psychol Med 1983 ; 13:239–249 Crossref , Medline ,  Google Scholar

5 Herzog DB, Keller MB, Lavori PW: Outcome in anorexia nervosa and bulimia nervosa: a review of the literature. J Nerv Ment Dis 1988 ; 176:131–143 Crossref , Medline ,  Google Scholar

6 Hsu LKG: The outcome of anorexia nervosa: a reappraisal. Psychol Med 1988 ; 18:807–812 Crossref , Medline ,  Google Scholar

7 Steinhausen H-C, Rauss-Mason C, Seidel R: Follow-up studies of anorexia nervosa: a review of four decades of outcome research. Psychol Med 1991 ; 21:447–454 Crossref , Medline ,  Google Scholar

8 Patton GC: Mortality in eating disorders. Psychol Med 1988 ; 18:947–951 Crossref , Medline ,  Google Scholar

9 Crisp AH, Callender JS, Halek C, Hsu LKG: Long-term mortality in anorexia nervosa: a 20-year follow-up of the St George's and Aberdeen cohorts. Br J Psychiatry 1992 ; 161:104–107 Crossref , Medline ,  Google Scholar

10 Sullivan PF: Mortality in anorexia nervosa. Am J Psychiatry 1995 ; 152:1073–1074 Link ,  Google Scholar

11 Cohen P, Cohen J: The clinician's illusion. Arch Gen Psychiatry 1984 ; 41:1178–1182 Crossref , Medline ,  Google Scholar

12 Beautrais AL, Joyce PR, Mulder RT, Fergusson DM, Deavoll BJ, Nightingale SK: Prevalence and comorbidity of mental disorders in persons making serious suicide attempts: a case-control study. Am J Psychiatry 1996 ; 153:1009–1014 Link ,  Google Scholar

13 Nurnberger JI, Blehar MC, Kaufmann CA, York-Cooler C, Simpson SG, Harkavy-Friedman J, Severe JB, Malaspina D, Reich TD: Diagnostic Interview for Genetic Studies: rationale, unique features, and training. Arch Gen Psychiatry 1994 ; 51:849–859 Crossref , Medline ,  Google Scholar

14 Frances A: The Diagnostic Interview for Genetic Studies. Arch Gen Psychiatry 1994 ; 51:863–864 Crossref ,  Google Scholar

15 Endicott J, Spitzer RL, Fleiss JL, Cohen J: The Global Assessment Scale: a procedure for measuring overall severity of psychiatric disturbance. Arch Gen Psychiatry 1976 ; 33:766–771 Crossref , Medline ,  Google Scholar

16 Garfinkel DM, Olmsted MP, Polivy J: The Eating Disorders Inventory: a measure of cognitive-behavioral dimensions of anorexia nervosa and bulimia, in Anorexia Nervosa: Recent Developments in Research. Edited by Darby PL, Garfinkel PE, Garner DM, Coscina DV. New York, Alan R Liss, 1983, pp 173–184 Google Scholar

17 Garner DM: Eating Disorders Inventory-2: Professional Manual. Odessa, Fla, Psychological Assessment Resources, 1991 Google Scholar

18 Stunkard AJ, Messick S: Three-Factor Eating Questionnaire to measure dietary restraint, disinhibition, and hunger. J Psycho~som Res 1985 ; 29:71–83 Crossref , Medline ,  Google Scholar

19 Gershon ES, Mark A, Cohen N, Belizon N, Baron M, Knobe KE: Transmitted factors in the morbid risk of affective disorders: a controlled study. J Psychiatr Res 1975 ; 12:283–299 Crossref ,  Google Scholar

20 SAS User's Guide: Basics. Cary, NC, SAS Institute, 1982 Google Scholar

21 Cohen J: Statistical Power Analysis for the Behavioral Sciences. Hillsdale, NJ, Lawrence Erlbaum Associates, 1988 Google Scholar

22 Crisp AH, Hsu LKG, Harding B, Hartshorn J: Clinical features of anorexia nervosa: a study of a consecutive series of 102 female patients. J Psychosom Res 1980 ; 24:179–191 Crossref , Medline ,  Google Scholar

23 Isager T, Brinch M, Kreiner S, Tolstrup K: Death and relapse in anorexia nervosa: survival analysis of 151 cases. J Psychiatr Res 1985 ; 19:515–521 Crossref , Medline ,  Google Scholar

24 Szmukler G, McCance C, McCrone L, Hunter D: Anorexia nervosa: a psychiatric case register study from Aberdeen. Psycho~som Med 1986 ; 16:49–58 Crossref , Medline ,  Google Scholar

25 Casper RC: Personality features of women with good outcome from restricting anorexia nervosa. Psychol Med 1990 ; 52:156–170 Crossref ,  Google Scholar

26 Engel K: Prognostic factors in anorexia nervosa. Psychother Psychosom 1988 ; 49:137–144 Crossref , Medline ,  Google Scholar

27 Rollins N, Piazza E: Anorexia nervosa: a quantitative approach to follow-up. J Am Acad Child Psychiatry 1981 ; 20:167–183 Crossref , Medline ,  Google Scholar

28 Toner BB, Garfinkel PE, Garner DM: Affective and anxiety disorders in the long-term follow-up of anorexia nervosa. Int J Psychiatry Med 1988 ; 18:357–364 Crossref , Medline ,  Google Scholar

29 Halmi KA, Eckert E, Marchi P, Sampurgnaro V, Apple R, Cohen J: Comorbidity of psychiatric diagnoses in anorexia nervosa. Arch Gen Psychiatry 1991 ; 48:712–718 Crossref , Medline ,  Google Scholar

30 Gillberg IC, Råstam M, Gillberg C: Anorexia nervosa outcome: six-year controlled longitudinal study of 51 cases including a population cohort. J Am Acad Child Adolesc Psychiatry 1994 ; 33:729–739 Crossref , Medline ,  Google Scholar

31 Rosenvinge JH, Mouland SO: Outcome and prognosis of anorexia nervosa: a retrospective study of 41 subjects. Br J Psychiatry 1990 ; 156:92–97 Crossref , Medline ,  Google Scholar

32 Beck JC, Br<179>chner-M<179>rtensen K: Observations on the prognosis in anorexia nervosa. Acta Med Scand 1954 ; 149:409–430 Crossref , Medline ,  Google Scholar

33 Frazier SH: Anorexia nervosa. Dis Nerv Syst 1965 ; 26:155–159 Medline ,  Google Scholar

34 Crisp AH: Anorexia nervosa. Proc R Soc Med 1977 ; 70:464–470 Medline ,  Google Scholar

35 Kaye WH: Neuropeptide abnormalities in anorexia nervosa. Psychiatry Res 1996 ; 62:65–74 Crossref , Medline ,  Google Scholar

36 Bastiani AM, Rao R, Weltzin T, Kaye WH: Perfectionism in anorexia nervosa. Int J Eating Disorders 1995 ; 17:147–152 Crossref , Medline ,  Google Scholar

37 Strober M: Personality factors in anorexia nervosa. Pediatrician 1983–1985; 12( 2 – 3 ):134–138 Google Scholar

38 Srinivasagam NM, Kaye WH, Plotnikov KH, Greeno C, Weltzin TE, Rao R: Persistent perfectionism, symmetry, and exactness after long-term recovery from anorexia nervosa. Am J Psychiatry 1995 ; 152:1630–1634 Link ,  Google Scholar

39 Kendler KS, MacLean C, Neale M, Kessler R, Heath A, Eaves L: The genetic epidemiology of bulimia nervosa. Am J Psychiatry 1991 ; 148:1627–1637 Link ,  Google Scholar

40 Bulik CM, Sullivan PF, Fear JL, Pickering A: Predictors of the development of bulimia nervosa in women with anorexia nervosa. J Nerv Ment Dis 1997 ; 185:704–707 Crossref , Medline ,  Google Scholar

41 Wells JE, Bushnell JA, Hornblow AR, Joyce PR, Oakley-Browne MA: Christchurch psychiatric epidemiology study, part I: methodology and lifetime prevalence for specific psychiatric disorders. Aust NZ J Psychiatry 1989 ; 23:315–326 Crossref , Medline ,  Google Scholar

42 Parker G: Are the lifetime prevalence estimates in the ECA study accurate? Psychol Med 1987 ; 17:275–282 Google Scholar

43 Greenfeld DG, Anyan WR, Hobart M, Quinlan DM, Plantes M: Insight into illness and outcome in anorexia nervosa. Int J Eating Disorders 1991 ; 10:101–109 Crossref ,  Google Scholar

44 Smith C, Feldman SS, Nasserbakht A, Steiner H: Psychological characteristics and DSM-III-R diagnoses at 6-year follow-up of adolescent anorexia nervosa. J Am Acad Child Adolesc Psychiatry 1993 ; 32:1237–1245 Crossref , Medline ,  Google Scholar

45 Råstam M, Gillberg IC, Gillberg C: Anorexia nervosa 6 years after onset, part II: comorbid psychiatric problems. Compr Psychiatry 1995 ; 36:70–76 Crossref , Medline ,  Google Scholar

46 Cantwell DP, Stuzenberger S, Burroughs J, Salkin B, Green JK: Anorexia nervosa: an affective disorder? Arch Gen Psychiatry 1977 ; 34:1087–1093 Google Scholar

47 Bulik CM, Sullivan PF, Fear JL, Joyce PR: Eating disorders and antecedent anxiety disorders: a controlled study. Acta Psychiatr Scand 1997 ; 96:101–107 Crossref , Medline ,  Google Scholar

• Eating disorders, disordered eating, and body image research in New Zealand: a scoping review 17 January 2023 | Journal of Eating Disorders, Vol. 11, No. 1
• Morbidity and mortality after adolescent eating disorders requiring inpatient care 24 March 2023 | Nordic Journal of Psychiatry, Vol. 77, No. 6
• International Journal of Eating Disorders, Vol. 56, No. 10
• Emotional Eating and Perfectionism as Predictors of Symptoms of Binge Eating Disorder: The Role of Perfectionism as a Mediator between Emotional Eating and Body Mass Index 16 August 2022 | Nutrients, Vol. 14, No. 16
• Systemic Treatment of Eating Disorders Across the Life Cycle 29 September 2020
• Systemic Treatment of Eating Disorders Across the Life Cycle 25 August 2020
• Anorexia nervosa: 30-year outcome 22 May 2019 | The British Journal of Psychiatry, Vol. 216, No. 2
• A systematic and methodological review of attentional biases in eating disorders: Food, body, and perfectionism 7 November 2019 | Brain and Behavior, Vol. 9, No. 12
• Neural correlates of body comparison and weight estimation in weight-recovered anorexia nervosa: a functional magnetic resonance imaging study 31 October 2018 | BioPsychoSocial Medicine, Vol. 12, No. 1
• Profile analysis of treatment effect changes in eating disorder indicators 23 November 2017 | International Journal of Methods in Psychiatric Research, Vol. 27, No. 2
• Feeding and Eating Disorders 15 December 2023
• Psychiatry Research, Vol. 266
• Korean Journal of Health Education and Promotion, Vol. 35, No. 5
• Anorexia Nervosa 18 March 2017
• Eating Disorders 15 December 2023
• Aggression and Violent Behavior, Vol. 36
• Twin Research and Human Genetics, Vol. 20, No. 4
• Mortality in Women With Anorexia Nervosa: The Role of Comorbid Psychiatric Disorders Psychosomatic Medicine, Vol. 78, No. 8
• References 15 December 2023
• Current Psychiatry Reports, Vol. 18, No. 1
• Eating Behaviors, Vol. 23
• Journal of Psychology & Clinical Psychiatry, Vol. 6, No. 1
• European Eating Disorders Review, Vol. 24, No. 6
• Effects of autism spectrum disorders on outcome in teenage-onset anorexia nervosa evaluated by the Morgan-Russell outcome assessment schedule: a controlled community-based study 8 March 2015 | Molecular Autism, Vol. 6, No. 1
• Long‐term outcome in anorexia nervosa in the community 8 June 2015 | International Journal of Eating Disorders, Vol. 48, No. 7
• Immediate Effects of Body Checking Behaviour on Negative and Positive Emotions in Women with Eating Disorders: An Ecological Momentary Assessment Approach 20 June 2015 | European Eating Disorders Review, Vol. 23, No. 5
• Cancer Epidemiology, Vol. 39, No. 3
• Journal of Psychosomatic Research, Vol. 78, No. 3
• Comprehensive Psychiatry, Vol. 55, No. 8
• Functional Assessment of Non-suicidal Self-Injury and Eating Disorders 14 September 2013
• Intrasexual Competition and Other Theories of Eating Restriction 24 January 2014
• Eating disorders
• Eating Behaviors, Vol. 14, No. 3
• Trends in Psychiatry and Psychotherapy, Vol. 35, No. 2
• Cognitive Behavioural Models in Eating Disorders 3 October 2012
• Anorexia nervosa in pregnancy 25 July 2012 | The Obstetrician & Gynaecologist, Vol. 14, No. 3
• Anorexia Nervosa 25 June 2012
• Psychological Medicine, Vol. 42, No. 12
• Eating Disorders and Pregnancy MCN: The American Journal of Maternal/Child Nursing, Vol. 37, No. 1
• Eating Disorders: an Overview 10 July 2011
• How Is Maternal Nutrition Related to Preterm Birth? Annual Review of Nutrition, Vol. 31, No. 1
• Mortality Rates in Patients With Anorexia Nervosa and Other Eating Disorders Archives of General Psychiatry, Vol. 68, No. 7
• A comprehensive meta‐analysis of the risk of suicide in eating disorders 24 November 2010 | Acta Psychiatrica Scandinavica, Vol. 124, No. 1
• Mortality of eating disorders: A follow‐up study of treatment in a specialist unit 1974–2000 6 April 2011 | International Journal of Eating Disorders, Vol. 44, No. 4
• Eating and Weight Disorders, Vol. 16, No. 4
• Comprehensive Psychiatry, Vol. 52, No. 4
• Eating Behaviors, Vol. 12, No. 1
• The World Journal of Biological Psychiatry, Vol. 12, No. 6
• Exploring quality of life in the eating disorders 2 December 2009 | European Eating Disorders Review, Vol. 18, No. 2
• Behaviour Research and Therapy, Vol. 48, No. 1
• Nordic Journal of Psychiatry, Vol. 64, No. 1
• Refining the relationships of perfectionism, self-efficacy, and stress to dieting and binge eating: Examining the appearance, interpersonal, and academic domains International Journal of Eating Disorders, Vol. 41, No. 8
• Timing and prediction of relapse in a transdiagnostic eating disorder sample International Journal of Eating Disorders, Vol. 41, No. 7
• A pilot case series using qualitative and quantitative methods: Biological, psychological and social outcome in severe and enduring eating disorder (anorexia nervosa) International Journal of Eating Disorders, Vol. 41, No. 7
• Eating Behaviors, Vol. 9, No. 3
• Specific and nonspecific comorbidity in anorexia nervosa International Journal of Eating Disorders, Vol. 41, No. 1
• The Genetics of Anorexia Nervosa Annual Review of Nutrition, Vol. 27, No. 1
• Outcomes of eating disorders: A systematic review of the literature 1 January 2007 | International Journal of Eating Disorders, Vol. 40, No. 4
• International Journal of Eating Disorders, Vol. 40, No. S3
• Archives of Psychiatric Nursing, Vol. 21, No. 4
• Biological Psychiatry, Vol. 61, No. 9
• Clinical Psychology Review, Vol. 27, No. 3
• Twelve-year course and outcome predictors of anorexia nervosa International Journal of Eating Disorders, Vol. 39, No. 2
• European Eating Disorders Review, Vol. 14, No. 2
• The developmental association between eating disorders symptoms and symptoms of depression and anxiety in juvenile twin girls 23 June 2005 | Journal of Child Psychology and Psychiatry, Vol. 46, No. 12
• Federica Tozzi , M.D. ,
• Laura M. Thornton , Ph.D. ,
• Kelly L. Klump , Ph.D. ,
• Manfred M. Fichter , M.D. ,
• Katherine A. Halmi , M.D. ,
• Allan S. Kaplan , M.D. ,
• Michael Strober , Ph.D. ,
• D. Blake Woodside , M.D. ,
• Scott Crow , M.D. ,
• James Mitchell , M.D. ,
• Alessandro Rotondo , M.D. ,
• Mauro Mauri , M.D. ,
• Giovanni Cassano , M.D. ,
• Pamela Keel , Ph.D. ,
• Katherine H. Plotnicov , Ph.D. ,
• Christine Pollice , M.P.H. ,
• Lisa R. Lilenfeld , Ph.D. ,
• Wade H. Berrettini , M.D. ,
• Cynthia M. Bulik , Ph.D. , and
• Walter H. Kaye , M.D.
• International Journal of Eating Disorders, Vol. 37, No. S1
• Quality of Life Research, Vol. 14, No. 1
• British Journal of Psychiatry, Vol. 187, No. 6
• Health Care Analysis, Vol. 12, No. 4
• Endocrinología y Nutrición, Vol. 51, No. 4
• Anxiety and psychoactive substance use disorder comorbidity in anorexia nervosa or depression 25 July 2003 | International Journal of Eating Disorders, Vol. 34, No. 2
• Sing Lee , F.R.C.Psych. ,
• Y.Y. Lydia Chan , M.A. , and
• L.K. George Hsu , M.D.
• Causes and recovery in anorexia nervosa: The patient's perspective 25 February 2003 | International Journal of Eating Disorders, Vol. 33, No. 2
• Perfectionism in anorexia nervosa: A 6–24‐month follow‐up study 25 February 2003 | International Journal of Eating Disorders, Vol. 33, No. 2
• Behaviour Research and Therapy, Vol. 41, No. 5
• The Lancet, Vol. 361, No. 9355
• Annals of Medicine, Vol. 35, No. 7
• Journal of the American Academy of Child & Adolescent Psychiatry, Vol. 42, No. 5
• In Fitness and in Health
• Crafting Resourceful Bodies and Achieving Identities
• Minimal Mothers and Psychiatric Discourse about the Family
• Hierarchy, Power, and Gender in the “Therapeutic Family”
• “Typical Patients Are Not ‘Borderline’”
• A Narrative Approach to Anorexia
• Bibliography
• Mayo Clinic Proceedings, Vol. 78, No. 3
• Eating Disorders and Childbearing: Concealment and Consequences 5 August 2002 | Birth, Vol. 29, No. 3
• Hans-Christoph Steinhausen , M.D., Ph.D.
• Pacientes anoréxicas sin respuesta al tratamiento después de 6 meses de tratamiento multimodal: predictores de la evolución 12 May 2020 | European psychiatry (Ed. Española), Vol. 9, No. 3
• Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity, Vol. 7, No. 4
• General Hospital Psychiatry, Vol. 24, No. 2
• Personality and Individual Differences, Vol. 33, No. 2
• Child and Adolescent Psychiatric Clinics of North America, Vol. 11, No. 2
• Association between anorexia nervosa and the hsKCa3 gene: a family-based and case control study 21 January 2002 | Molecular Psychiatry, Vol. 7, No. 1
• Occupational Therapy in Mental Health, Vol. 18, No. 3-4
• Nonresponder anorectic patients after 6 months of multimodal treatment: predictors of outcome 16 April 2020 | European Psychiatry, Vol. 16, No. 8
• What treatments patients seek after inpatient care: A follow-up of 24 patients with anorexia nervosa 30 December 2013 | Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity, Vol. 6, No. 3
• Outcome of severe anorexia nervosa patients receiving inpatient treatment in Japan: An 8-year follow-up study Psychiatry and Clinical Neurosciences, Vol. 55, No. 4
• International Journal of Eating Disorders, Vol. 29, No. 2
• Behavior Therapy, Vol. 32, No. 1
• Psychiatric Clinics of North America, Vol. 24, No. 2
• International Journal of Eating Disorders, Vol. 27, No. 2
• International Journal of Eating Disorders, Vol. 28, No. 2
• Temperament, character and suicide attempts in anorexia nervosa, bulimia nervosa and major depression 13 November 2007 | Acta Psychiatrica Scandinavica, Vol. 100, No. 1
• International Journal of Eating Disorders, Vol. 25, No. 2
• Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity, Vol. 4, No. 4
• Journal of the American Academy of Child & Adolescent Psychiatry, Vol. 38, No. 7

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• PMC10266399

Approach to anorexia nervosa and atypical anorexia nervosa in adolescents

Rabea parpia.

Family physician in Toronto, Ont.

Wendy Spettigue

Associate Professor in the Department of Psychiatry at the University of Ottawa in Ontario and a child and adolescent psychiatrist at the Children’s Hospital of Eastern Ontario.

Mark L. Norris

Professor of Pediatrics at the University of Ottawa and an adolescent health physician at the Children’s Hospital of Eastern Ontario.

To address screening, diagnosis, and treatment of adolescents with anorexia nervosa and atypical anorexia nervosa in primary care.

Sources of information

A literature search was conducted in PubMed using the subject headings anorexia nervosa, adolescents, COVID-19, review, guidelines , and primary care . Applicable articles were reviewed, with key recommendations summarized. Most evidence is level I.

Main message

Recent studies suggest that the global COVID-19 pandemic contributed to an increase in the incidence of eating disorders, particularly among teenagers. This has resulted in increasing responsibility for primary care providers regarding the assessment, diagnosis, and management of these disorders. Moreover, primary care providers are in ideal positions to identify adolescents at risk of eating disorders. Early intervention is of utmost importance for avoiding long-term health consequences. High rates of atypical anorexia nervosa indicate a need for providers to have awareness of weight biases and stigmas. Treatment primarily involves a combination of renourishment and psychotherapy, generally through family-based therapy, with pharmacotherapy playing a lesser role.

Anorexia nervosa and atypical anorexia nervosa are serious, potentially life-threatening illnesses that are best addressed through early detection and treatment. Family physicians are in an optimal position to screen for, diagnose, and treat these illnesses.

Anorexia nervosa (AN) and atypical anorexia nervosa (AAN) are serious, potentially life-threatening illnesses that are best addressed through early detection and treatment. Recent studies suggest that the global COVID-19 pandemic has contributed to an increase in the incidence of eating disorders (EDs), particularly among teenagers. 1 , 2 Primary care providers (PCPs) play an important role in addressing screening, diagnosis, and treatment of adolescents with AN or AAN.

Case introduction

A 14-year-old female patient presents to your clinic for assessment owing to 4 months of amenorrhea. The patient reports previously regular cycles since menarche at age 12. She discloses feeling lonely during the COVID-19 pandemic and becoming increasingly preoccupied with weight, expressing a strong desire to “become healthier” through exercising and monitoring her food intake. She reports feeling lower mood and more anxiety, as well as having difficulty concentrating. You measure her vital signs, height, and weight. You have not seen her in person for 2 years. Her last height and weight measurements are from age 12 and both had been at the 75th percentile and had tracked at this percentile throughout childhood. Today, her height remains around the 75th percentile, but her weight is now at the 25th percentile. Based on her growth charts, you estimate her current weight to be approximately 80% of what it should be. Her heart rate is 55 beats per minute at rest and her blood pressure is 100/70 mm Hg with an orthostatic change in heart rate of 28 beats per minute. You order relevant blood work and an electrocardiogram, which reveals sinus bradycardia.

A literature search was conducted in PubMed using the subject headings anorexia nervosa, adolescents, COVID-19, review, guidelines , and primary care . The focus of our review is geared toward older children and teenagers. Articles of relevance were reviewed, summarized, and cited as appropriate. The level of evidence for most treatment recommendations was level I. When level I or II evidence was not available, the expert opinions of 2 of the authors (W.S., M.L.N.) and consensus statements were used as level III evidence.

Impact of COVID-19 on EDs in adolescents . The COVID-19 pandemic has been associated with an increase in the incidence of EDs. 1 , 2 Compared with those seen in 2019, young people assessed for EDs in 2020 tended to be more severely ill and were significantly more likely to be medically unstable ( P =.005). 2 Loss of activities, routine, and social interaction along with increased time on social media because of COVID-19 pandemic restrictions have been identified as having contributed to the increased rate of EDs. 3 Moreover, as the demand for specialized treatment programs has increased, 2 PCPs are increasingly faced with diagnosing and managing patients with these illnesses. The importance of early identification and treatment for young people with AN or AAN is related to the high rates of morbidity and mortality associated with both illnesses, and to the fact that outcomes for AN are directly related to length of illness and speed of weight restoration. 4 - 7

Definitions . Anorexia nervosa is a restrictive ED that often begins in adolescence. 8 Diagnostic and Statistical Manual of Mental Disorders , 5th edition, criteria for diagnosis are outlined in Box 1 . 9 The term atypical anorexia nervosa is used to describe an individual with a history of living in a larger body who becomes preoccupied with weight or shape and loses a considerable amount of weight but nonetheless remains in a range considered healthy (eg, dropping from the 95th percentile to the 50th percentile). 8 Recently, an increased prevalence of patients with AAN (who would not meet the underweight criteria but meet all other criteria) has been observed. 10 Weight loss in this population may not always be recognized as problematic. 11 , 12 This is concerning, as studies suggest that patients with AAN exhibit serious psychological distress and demonstrate similar risks related to malnutrition. 13 Equally concerning are reports by patients with AAN that health-related counselling contributed to illness onset and progression. 14

DSM-5 criteria for the diagnosis of anorexia nervosa

• Restriction of intake which leads to a substantial change in body weight
• Intense fear of gaining weight or becoming fat, or persistent behaviour that interferes with weight gain
• Disturbance in body weight or shape, self-worth influenced by body weight or shape, or persistent lack of recognition of the seriousness of low body weight

Specifiers:

• Restricting type—during the past 3 mo, weight loss is accomplished primarily through dieting, fasting, or excessive exercise (individual has not regularly engaged in binge eating or purging)
• Binge-eating and purging type—during the past 3 mo has regularly engaged in binge eating or purging

DSM-5— Diagnostic and Statistical Manual of Mental Disorders , 5th ed. Data from the DSM-5. 9

Understanding EDs . Eating disorders in young people are often associated with personality traits and characteristics such as obsessiveness, perfectionism, anxiety, and depression. 15 With AN and AAN, individuals experience obsessive thoughts that they are eating too much, that they will gain weight, or that they must compensate in some way for consumed calories. The behaviour directed at weight loss is often compulsive—for example, calorie restriction, purging, or overexercising. 16 While EDs are fuelled by negative feelings, they often begin with weight loss. 17 As weight loss ensues, the malnourished brain becomes increasingly focused and obsessed, which in turn fuels the disorder, propelling increased compulsive behaviour directed at weight loss. 16 Ultimately, weight gain is necessary for recovery.

Screening for EDs in adolescents . The British 5-item SCOFF questionnaire is a commonly used screening tool with high sensitivity for AN. 18 , 19 The 2-item Ottawa Disordered Eating Screen for Youth was developed as a short and accurate screening tool for earlier detection of general disordered eating thoughts and behaviour in youth ( Table 1 ). 20 Monitoring height and weight is also important, as it allows PCPs to assess and correlate whether emotional difficulties are impacting weight.

The ODES-Y screening questions: A positive screening result (yes to both questions) should prompt further questioning about intake, weight and shape preoccupation, and eating disorder symptoms .

ODES-Y—Ottawa Disordered Eating Screen for Youth.

Data from Obeid et al. 20

Initial assessment . An initial visit should contain a focused history and physical examination with emphasis on ED symptoms (restricting, bingeing, purging, overexercising) and the patient’s safety. Subsequent visits should involve more discussion with respect to daily nutritional intake and weight history as well as a focused mental health review involving stressors, self-critical thoughts, mood, suicidality, self-harm, sleep, substance use, energy level, and concentration. 21 If applicable, a menstrual history should be obtained. Common physical symptoms of EDs should also be asked about, including reflux esophagitis, constipation, nausea, presyncope, palpitations, chest pain, weakness, fatigue, lanugo, dry skin, hair loss, muscle cramps, joint pain, pallor, easy bruising, and cold intolerance. 22 Signs of severe purging may include abrasions on knuckles, poor dentition, halitosis, and salivary gland hypertrophy. 22

Physical examination should include measurement of weight, height, temperature, and postural vital signs (heart rate and other vital signs measured after lying horizontally for 5 minutes and then again after standing for 2 minutes). Many clinicians encourage blind weight measurement, where the patient is weighed wearing only a gown, facing away from the scale, and the weight is not reported to the patient. 23

When providing a patient or their family members with a diagnosis of AN or AAN, the seriousness should be underscored. Families and patients should be informed that these diagnoses are often due to a combination of genetic, environmental, and social factors. 16 Providers should emphasize the need for weight restoration, including a discussion of the medical and psychological effects of insufficient nutrition and the long-term health outcomes. When appropriate, providers should empower caregivers to take control of nutrition. When available, patients should be referred to the nearest specialized ED program, and families should be provided with psychoeducational resources ( Table 2 ) and directed to a therapist and a dietitian with relevant expertise.

Recommended Canadian resources for patients and caregivers

At an early visit, a treatment goal weight (TGW) should be determined. We recommend, when possible, using a patient’s prior growth curve to project weight as if they had continued to grow along their curve without weight loss. 24 In younger teenagers, TGW should be reassessed at least every 6 months. Return of regular menstrual function, if applicable, may also serve as an indication that a patient is approaching their TGW. 24 In patients with AAN, it is important that issues related to weight bias and stigma do not influence the determination of an optimal TGW, which will be higher than the 50th-percentile body mass index for age.

Depending on the degree of clinical concern, initial blood work may include complete blood count; assessment of renal function; and measurement of electrolyte, extended electrolyte, liver enzyme, albumin, vitamin B12, ferritin, and lipid levels. Other investigations can also be considered to rule out other causes of symptoms, including measurement of thyroid-stimulating hormone, luteinizing hormone, follicle-stimulating hormone, estradiol, androgen, and C-reactive protein levels and erythrocyte sedimentation rate. Urinalysis can assist with assessment for hydration status, the presence of ketones, and proteinuria. An electrocardiogram should be done to rule out bradycardia, arrhythmias, and corrected QT interval prolongation. 25 Providers should be aware that certain symptoms (such as purging) also require specific ongoing monitoring. If any indications for hospitalization listed in Box 2 are met, the patient should be sent to the nearest emergency department. 26 , 27

Acute indications for hospitalization for AN or AAN in a young person

The following indicate a need for hospitalization:

• <75% of treatment goal weight
• Arrested growth or development
• Core temperature <35.6°C (<96.0°F)
• Heart rate <50 BPM in the daytime or <45 BPM overnight
• Blood pressure <90/60 mm Hg or orthostatic hypotension (sustained increase in pulse of >40 BPM or a sustained decrease in blood pressure of >10 diastolic or >20 systolic mm Hg/min from lying to standing)
• ECG showing arrhythmia, prolonged QTc interval, or severe bradycardia
• Electrolyte abnormalities (eg, hypoglycemia, hyponatremia, hypophosphatemia, hypokalemia, hypomagnesemia)
• Uncontrolled bingeing or purging
• Dehydration
• Poorly controlled mental health or other medical diagnosis that is resulting in a barrier to care for the eating disorder (eg, severe depression, obsessive compulsive disorder, type 1 diabetes mellitus, etc)
• Active suicidal ideation

AN—anorexia nervosa, ANN—atypical anorexia nervosa, BPM—beats per minute, ECG—electrocardiogram, QTc—corrected QT.

Data from van der Leer et al and the Society for Adolescent Health and Medicine. 26 , 27

Outpatient treatment overview . Assessment and management of patients with EDs require regular in-person visits given the need for physical examination and measurement of weight and vital signs. Further, assurance of a confidential setting is paramount. If patients do not meet any of the criteria for inpatient management ( Box 2 ), 26 , 27 then outpatient weight restoration is the treatment of choice. The core components of treatment are renourishment and psychotherapy, with family-based therapy being the most effective treatment. 21 Family-based therapy involves a multidisciplinary team including a PCP as well as a psychologist or psychotherapist and, if available, a dietitian experienced in treating EDs. Ensuring an open line of communication between team members is essential to maintaining a uniform approach.

Psychotherapy . In family-based therapy, the entire family supports recovery. Initially, caregivers should be encouraged to oversee 3 meals and 3 snacks per day. 21 If a patient is unable to complete their nutrition plan, they may be offered supplements and progress toward full intake of solid food. During this phase, the ED can be externalized, meaning that it is discussed as an external force that is putting thoughts into a patient’s head and compelling them to behave in ways that jeopardize their health. 28 As a patient improves and reaches their TGW, they can transition to taking on more independence in eating. 21 For older teens or those without families who are able to support them, cognitive-behavioural therapy for EDs is the recommended treatment. 29

Monitoring . The frequency of medical visits should correlate with the degree of weight suppression and severity of ED symptoms. For patients with acute weight loss, in-person appointments may be required weekly to ensure patients remain medically stable. At each visit, weight and orthostatic vital signs should be tracked, followed by a check-in with the patient and caregivers. If weight is not increasing appropriately, contributing factors—such as purging or secretive compulsive overexercising—should be explored in a compassionate and nonblaming way. Management considerations may include increased supervision around meals, reassessing frequency and intensity of exercise, and addressing stressors. If weight or overall status continue to decline, patients should be referred to a specialized program. As nutrition increases, care should be taken to evaluate risk of refeeding complications. Blood work should be checked monthly, at minimum, during the initial renourishment stage and more frequently if a patient is actively purging or if there are concerns about medical stability. Regular electrocardiographic monitoring may also be required. Clinicians could also suggest initiating a multivitamin with iron and vitamin D.

Patients at acute risk of refeeding syndrome, generally those with a higher degree of malnutrition at presentation (ie, <75% TGW), should be admitted for renourishment. 30 Gastrointestinal complaints are common during the acute phase of refeeding and will likely resolve with continued feeding; these can be quite distressing, however, and may require symptomatic treatment. 31 , 32

Treatment of comorbidities . Malnutrition can result in many psychological and cognitive effects, including irritability, anxiety, depression, obsessive preoccupations, mood swings, insomnia, and impaired concentration and cognition. 33 In the context of AN and AAN, this can make it difficult to diagnose and treat comorbidities, as psychological symptoms may have been present prior to the ED, may be associated with weight gain, or may stem from malnutrition. 34 , 35

Pharmacotherapy . The primary treatments for AN are renourishment and psychotherapy, with limited roles for pharmacotherapy. Antidepressants confer limited benefit until the brain has been renourished. They may be considered where there is a clear comorbidity that merits antidepressant treatment but only once the patient approaches their TGW. 36 , 37 There is emerging evidence for use of second-generation antipsychotics, particularly olanzapine, in the acute phase of treatment. 38

Case resolution

It is clear that your patient meets the diagnostic criteria for AN, restricting subtype. You explain this to her and to her mother, and they both become tearful. You determine that outpatient treatment would be optimal. You discuss the effects of malnutrition and explain that her brain and body need energy to repair, and that nutrition is the primary medicine her body needs. You refer her to a specialized dietitian and a psychologist, and you monitor her every 2 weeks to begin with. Although distress is initially associated with weight gain, her feelings of anxiety and low mood gradually improve with renourishment.

Anorexia nervosa and AAN are serious, potentially fatal illnesses that are best addressed through early detection and treatment. Treatment requires weight restoration along with psychoeducation and psychotherapy. Insufficient nutrition and lack of weight restoration have devastating effects on physical and mental health. Primary care providers are ideally positioned to identify teenagers at risk of EDs and to initiate management.

Editor’s key points

• ▸ The Ottawa Disordered Eating Screen for Youth is a brief questionnaire that can be used in conjunction with regular visits with adolescents to screen for eating disorders.
• ▸ Renourishment and psychotherapy, particularly family-based therapy, are the cornerstones of treatment for anorexia nervosa and atypical anorexia nervosa in adolescents.
• ▸ In terms of pharmacotherapy, antidepressants confer limited benefit until weight restoration has occurred, although there is emerging evidence for second-generation antipsychotics to manage distress during the acute phase of treatment.
• ▸ Atypical anorexia nervosa is associated with serious health outcomes, and the increase in the incidence of this disorder observed during the COVID-19 pandemic should prompt primary care providers to rethink how they approach weight with patients, challenge weight-based stereotypes, and shift from a focus on weight to a focus on healthy behaviour.

Contributors

All authors contributed to the literature review and to preparing the manuscript for submission.

Competing interests

None declared

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This article has been peer reviewed.

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