ANAD Statement on 'Terminal Anorexia'

By: National Association of Anorexia Nervosa & Associated Disorders (ANAD)

ANAD is putting out an urgent call to action to stop the loss of lives due to eating disorders. We are responding to the recent controversy regarding “terminal anorexia”; a label which classifies this psychiatric condition as a terminal illness.1 ANAD fears that this label could be used as a justification for providers to offer medical aid in dying and overlook the fact recovery remains possible even after decades of chronic illness.2

ANAD exists to help build nonjudgmental environments that “meet folks where they are.” This means respect for individual autonomy, a focus on well-being and quality of life, and support for the pace and direction of the individual’s goals while also keeping the door open for a full recovery whenever the person is ready. 

Too often, individuals labeled with ‘severe and enduring anorexia nervosa’ (SE-AN) have been refused care because they can/do not comply with the target weights assigned or continue to struggle with eating disorder behaviors. This is a reminder that the professionals guiding recoveries must do more to offer alternative treatment options that are in line with the patient’s goals for quality of life improvement. Increasingly, studies show that individuals with SE-AN benefit from flexible, nontraditional treatments that focus on quality of life, safety, and harm reduction.3 Many professionals utilize practices based solely on published treatment standards without consideration of individual or cultural experiences. Rather than excluding patients from treatment if they are unable to meet strict indicators of progress or unrealistic goals, the more humane approach is to allow people to have input into their treatment plans. Providing opportunities to learn how to decrease the negative consequences of their eating disorder while providing a safety net for crises are strategies that can act as an alternative to more structured care.4  

While full recovery will always be an important goal, ANAD recognizes that all positive changes, no matter how small, are worthy goals in their own right. For those struggling to progress to full recovery, there are still opportunities to improve quality of life, and there must be alternative forms of care to support those opportunities. No matter the patients’ current frame of mind, their providers must hold space for the idea that they may be ready for full recovery in the future.

We must not confuse ‘chronic’ with ‘terminal.’ Being labeled with a terminal illness has the potential to become a self-fulfilling prophecy. Regardless of the duration or severity of the illness, everyone deserves access to quality care.

ANAD calls for increased flexibility in and opportunities for treatment, patient autonomy in goal-setting, and provider respect for goals that include quality of life improvements and harm reduction while continuing to believe in the possibility of future recovery, even where their patients cannot. We must remain committed to holding hope and helping people find a life worth living.

References

1. Ayton, Agnes, Ali Ibrahim, Suzanne Baker, Ashish Kumar, Hope Virgo, and Gerome Breen. 2023. “From awareness to action: an urgent call to reduce mortality and improve outcomes in eating disorders.” Cambridge University Press. https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/from-awareness-to-action-an-urgent-call-to-reduce-mortality-and-improve-outcomes-in-eating-disorders/019E648156106F5D956704E7CB7727A3?utm_campaign=shareaholic&utm_medium=emai.

2. Westmoreland, Patricia, Cyntha M. Geppert, Mark S. Komrad, Annette Hanson, Ronald W. Pies, and Philip Mehler. n.d. “Terminal Anorexia”: An Invalid Construct That Does Not Justify Medical Aid in Dying.” Psychiatric Times. Accessed April 24, 2024. https://www.psychiatrictimes.com/view/terminal-anorexia-an-invalid-construct-that-does-not-justify-medical-aid-in-dying.

3. The Victorian Center of Excellence in Eating Disorders. n.d. “Harm Reduction for Adults with Harmful Eating and Body Control Behaviours: OVERVIEW of Harm Reduction and Eating Disorders.” The Victorian Center of Excellence in Eating Disorders. Accessed April 24, 2024. https://ceed.org.au/wp-content/uploads/2021/08/CEED_Harm-Reduction-for-Adults-with-EDs_Overview-Harm-Reduction_08.2021.pdf.

4. Yager, Joel. n.d. “Working with Patients with Severe and Enduring Eating Disorders Who Refuse Further Treatment.” Eating Disorders Review 32 (5). Accessed April 24, 2024. https://eatingdisordersreview.com/working-with-patients-with-severe-and-enduring-eating-disorders-who-refuse-further-treatment/.