End-Stage Anorexia: What is it and What are the Symptoms?

While many are aware of how dangerous and harmful anorexia nervosa behaviors can be, it seems it is still difficult for anyone to imagine that they could witness this in themselves or someone they love.

The sad truth is that the mortality rate for individuals with anorexia nervosa is the second-highest of all DSM-5 diagnoses, coming after opioid-use disorder [1]. Individuals with anorexia nervosa have a mortality rate 5 to 16 times that of the general population [1]. Further, less than one-third of individuals struggling with anorexia nervosa will recover if the disorder persists after 9 years, even if they received treatment in that time period [2].

All of these statistics make it clear that, as shocking as it may be, there are many individuals whose experience of anorexia nervosa will prove chronic and, potentially, terminal.

What is End-Stage Anorexia Nervosa?

There is no current criteria for end-stage anorexia nervosa, however, there is some support for the delineation of “Severe and Enduring Anorexia Nervosa” or SE-AN [1].” This label was created from the fact “that a substantial number of AN patients are refractory to current treatments and become chronic [3].” This term “has been applied to patients with an active disease of 5–10 years in duration [3].”

Even SE-AN, however, does not fully encapsulate what end-stage anorexia nervosa is. It is possible that individuals with end-stage anorexia nervosa will have experienced SE-AN but they are not the same thing.

End-stage anorexia nervosa is anorexia nervosa in its most dangerous and severe form. Those experiencing end-stage anorexia present as severely underweight with a BMI of less than 15, are suffering the physical and psychological effects of severe starvation, and require immediate life-saving medical interventions [2].

If left untreated, end-stage anorexia nervosa will often lead to death.

End-Stage Anorexia Symptoms

End-Stage Anorexia Nervosa symptoms are, in many ways, similar to the symptoms presented in all stages of anorexia nervosa. These will be identified below, however, it is important to make particular note of the symptoms that are unique to end-stage anorexia nervosa, as these symptoms indicate that the disorder is in its most severe and, therefore, dangerous, form and that the individual struggling requires immediate medical attention.

Psychological Symptoms

Anorexia nervosa involves the severe restriction of nutritional intake and the body absolutely bears the brunt of this, whether through physical damage or change in psychological functioning due to a starved brain. The following are indications that an individual is engaging in severe restrictive behaviors indicative of anorexia nervosa:

• Increased mood disturbance such as depression, anxiety, suicidality, etc.
• Slow brain processing and delayed thinking and reaction speed.
• Hyperfixation on the body, food, and/or exercise.
• Lethargy.
• Difficulty forming coherent thought processes and/or sentences.
• Impaired judgment.

Physical Symptoms

The physical body also presents severe changes when an individual is not engaging in appropriate and adequate nourishment. Some physical indications of end-stage anorexia nervosa behaviors include:

• Skeletal appearance.
• Muscle wasting.
• Yellowed skin.
• Dry, flaky skin.
• Inflammation and fissures at the corners of the mouth.
• Dry, thin, and/or brittle hair.
• Downy, soft, hair (called “lanugo”) growing on the body.
• Impaired body-temperature regulation.
• Loss of head hair.
• Bluish appearance on earlobes and tips of fingers.
• Fingernails dry and brittle and possibly falling off.
• Constipation.
• Frequent urination during the night.
• Delayed puberty or loss of menstrual cycle (amenorrhea).
• Fainting and/or dizziness.
• Irregular heartbeat.
• Seizures.
• Numbness/tingling in the hands and/or feet.
• Impaired immune functioning.
• Low bone mineral density (resulting in Osteopenia and Osteoporosis).
• Elevated liver enzymes.
• Low white-blood-cell counts (causing anemia and thrombocytopenia).
• Hypokalemia (extremely low concentration of potassium in the blood, often due to dehydration).
• Refeeding syndrome (electrolyte imbalances during refeeding causing the heart to stop beating).
• Severe hypoglycemia.
• Impaired organ functioning.
• Electrolyte imbalances.
• Cardiac abnormalities.
• Structural changes and damage to the brain.

Treatment for End-Stage Anorexia Nervosa

Treating end-stage anorexia is a conflicting topic for many professionals. Please note that end-stage anorexia nervosa does not mean the disorder is terminal. One article published in Eating Disorders Resource Catalog clarifies that “medical complications of eating disorders are usually treatable, even in their most severe form. What makes an eating disorder end stage is most often dependent on whether an individual (and his or her family) decides not to engage in further treatment [4].”

A key question that is often debated is whether an individual has the mental capacity to refuse treatment when experiencing such a severe state of anorexia nervosa. The same article mentioned above notes that end-stage anorexia nervosa results in “difficulties with thought processing, overvalued ideas, poor reality testing, and lack of insight are barriers to capacity” and goes on to detail that “it is questionable whether individuals with severe eating disorders have the capacity to decide that further treatment is futile when the core symptom of their illness is a cognitive distortion resulting in their refusal to believe that restricting their intake is life-threatening [4].

The article outlines the two sides of this debate quite aptly, noting that:

Some eating disorder professionals oppose palliative and end-of-life care (for those with end-stage anorexia nervosa), stating that this is a ‘slippery slope’ that could result in all individuals with chronic eating disorders ending up in hospice or palliative care. Proponents of this viewpoint argue that, when an individual’s decision-making capacity is nullified by the effects of the illness, the medical profession is duty-bound to restore that individual to a state where decision-making capacity once again becomes intact. Alternately, some eating disorder treatment providers are reluctant to undertake treatment that bears little hope of advancing a patient’s quality of life, opposes the wishes of the patient and his or her family, and extends a life of suffering, even if that individual’s decision-making capacity is diminished [4].

Ultimately, the current recommended treatment for an individual with end-stage anorexia nervosa is to receive medical care to replenish nourishment & improved health overall. As mentioned above, it is possible for individuals to heal from even the most severe physical impacts of restriction.

Once an individual is moving toward appropriate nourishment to the degree that they have improved cognition, they should continue engaging in refeeding while also attending eating disorder treatment. This treatment will allow the individual to explore their relationship to food, their bodies, and their mental wellness to identify barriers to recovery and work through these.

While anorexia nervosa is a dangerous disorder that can take someone’s life, there is always hope. Recovery is absolutely always a possibility.

Resources

[1] Gaudiana, J. L., Bogetz, A., and Yager, J. (2022). Terminal anorexia nervosa: three cases and proposed clinical characteristics. Journal of Eating Disorders, 10:23.

[2] Gibson, D., Watters, A., Cost, J., Mascolo, M., & Mehler, P. S. (2020). Extreme anorexia nervosa: medical findings, outcomes, and inferences from a retrospective cohort. Journal of Eating Disorders, 8:25.

[3] Gutierrez, E., Carrera, O. (2021). Severe and enduring anorexia nervosa: enduring wrong assumptions? Frontiers in Psychiatry, 11.

[4] Westmoreland, P., Mehler, P.S. (2019). Eating disorders and palliative care. Eating Disorders Resource Catalogue. Retrieved from https://www.edcatalogue.com/eating-disorders-palliative-care/.

---

The opinions and views of our guest contributors are shared to provide a broad perspective on eating disorders. These are not necessarily the views of Eating Disorder Hope, but an effort to offer a discussion of various issues by different concerned individuals.

We at Eating Disorder Hope understand that eating disorders result from a combination of environmental and genetic factors. If you or a loved one are suffering from an eating disorder, please know that there is hope for you, and seek immediate professional help.

Published August 17, 2022, on EatingDisorderHope.com
Reviewed & Approved on November 2, 2022, by Jacquelyn Ekern MS, LPC