The importance of terminology, lived experience inclusion and scientific discussion regarding end-of-life care in anorexia nervosa: a response to Gaudiani et al.

Abstract

Whether or not to define ‘terminal anorexia nervosa’ has been a hotly debated topic in the eating disorders field recently. Being able to have open scientific debate on important topics such as this is essential for the progress of our field—but needs to be undertaken respectfully, allowing all perspectives to be heard. My personal perspective on this topic comes from being a researcher who sees individuals with anorexia nervosa (AN) across all stages of illness and recovery, as well as having had a loved one die from AN. Although I disagree with the terminology of ‘terminal AN’ and believe that establishing criteria has the potential to cause harm, I strongly believe in showing compassion to individuals with AN across all illness stages, including those who may wish to seek end-of-life care. This is a complex issue that our field requires guidance on, and we need to work in genuine collaboration with individuals with lived experience of AN to figure out how to appropriately approach end-of-life care when it is warranted.