What is End Stage Anorexia?
Disclaimer
End-stage anorexia is generally not a term that should be used to describe people with anorexia. We believe all patients can recover from eating disorders and should not be labeled as 'end-stage' just because they have a persisting mental illness. Nonetheless, we discuss the details of this plausible label and the controversy surrounding it to give our readers an overview of the topic.
What is Anorexia Nervosa?
Anorexia Nervosa (AN) is a psychiatric illness with the highest mortality. It is defined by a failure to maintain adequate body weight, a fear of gaining or becoming fat, and preoccupations about body shape or weight [1]. It is linked to multiple medical complications, including cardiovascular problems and hormonal imbalance. It predominantly develops in adolescence, with the highest incidence in 13-15-year-old girls. As this is a critical time of development, it can lead to physical, psychological, and social morbidity and high mortality if not treated early [2].
The disorder is characterized by multiple psychological disturbances, including distorted body image, active pursuit of thinness, reduced interoception, increased body hair growth, anhedonia, and loss of the menstrual cycle [3]. Many symptoms of anorexia, such as preoccupation with food and anhedonia, normalize with weight restoration.
The origins and pathophysiology of anorexia are still poorly understood [4]. It can be triggered by intentional weight loss, trauma, or stressful life periods. One may also have a genetic predisposition for anorexia [5].
Treatment of Anorexia Nervosa
The treatment of anorexia is complex, as patients frequently do not realize the extent of their illness. Eating disorder recovery involves significant weight gain and nutritional rehabilitation and may include family therapy, medical treatment centres, and, in severe cases, a feeding tube. Increasing caloric intake must be done under medical supervision to avoid health problems such as refeeding syndrome.
Different types of talking therapy are also used alongside nutritional rehabilitation. This may involve family-based therapies, such as the Maudsley approach or cognitive behavioural therapy. For severe anorexia patients, including end-stage anorexia, experimental methods and adverse effects, including ketamine and psychedelics, are also being trialled with preliminary success.
What is the Prevalence of Anorexia?
The prevalence of anorexia nervosa varies across different populations and age groups. In general, anorexia nervosa is more common in young females, with an average prevalence rate of approximately 0.3% [6, 7]. A study in South West London found a prevalence of 0.1% in females aged 15-29 years [8]. Another study in South Australia revealed a one-year prevalence of 1.05 cases per thousand in the population studied [9]. Many clinicians agree that the prevalence of anorexia has increased since the COVID-19 pandemic, although this has been difficult to capture empirically.
Anorexia nervosa also occurs in males, though less commonly, with estimates of around 10% of the total anorexia cases [10]. These prevalence rates can vary depending on the methodology and the population studied. For instance, a study conducted in Portugal found a prevalence of 0.37% in a population of female adolescents [11].
What is End Stage Anorexia?
End Stage Anorexia, also referred to as terminal anorexia or severe and enduring anorexia nervosa (SE-AN), describes a stage where the individual's health has severely deteriorated due to prolonged malnutrition, and recovery may be uncertain or unlikely [12, 13, 14]. Warning signs include prolonged refusal of medical care, compounded health problems, and difficulty making decisions.
Treatment of End Stage Anorexia
End stage anorexia nervosa, if accepted as a medical diagnosis, may be managed differently from acute or chronic anorexia nervosa. This might involve palliative care, potentially involving hospice care, with a different treatment team. The focus would be on providing the patient with a safe space.
Debate Surrounding End Stage Anorexia
The concept of terminal anorexia nervosa is a topic of ongoing debate among medical professionals. Some argue that labeling anorexia nervosa as "terminal" could lead to unjustified deaths in individuals whose mental illness impairs their capacity to make reasoned treatment decisions [12]. Others believe recognizing this stage is crucial for providing appropriate end-of-life care for these patients, similar to other terminal conditions. They argue that avoiding the term "terminal anorexia nervosa" will not eliminate the reality that some individuals with severe anorexia nervosa will progressively decline and may die as a result of their condition [14]. Sudden death with a diagnosis of anorexia is also not the same as end-stage anorexia.
However, it is crucial to remember that anorexia nervosa is a treatable condition, and many individuals do recover. The term "End Stage Anorexia" should be used with caution and only in cases where all treatment options have been exhausted and have failed to provide adequate amelioration of suffering [15].