Dr. Gaudiani’s Response to Journal of Pain and Symptom Management Abstract Article
(CW: Longstanding anorexia nervosa and discussion related to Dr. Gaudiani's article on "terminal anorexia nervosa")
Dr. Gaudiani remains committed to the continued conversation generated by her 2022 journal article on "terminal anorexia nervosa" (please note that Dr. Gaudiani has since retracted the term "terminal anorexia nervosa"). Part of this work is ongoing reflection and clarification about this tiny fraction of people with eating disorders. In a recent abstract in the Journal of Pain and Symptom Management, the author stated that, "Severe Enduring Anorexia Nervosa (SE-AN), also known as 'terminal anorexia,’ is a rare, but life-threatening progression of restrictive and other eating-disordered behaviors". As the publication does not accept letters regarding abstract articles, Dr. Gaudiani wanted to share her response with the hope of providing ongoing clarification and feedback.
Whereas up to 20% of individuals are thought to develop a persistent form of an eating disorder, it is categorically incorrect to say that those with severe and enduring anorexia nervosa or longstanding anorexia nervosa have “terminal anorexia nervosa.” This comparison is equivalent to saying that everyone with Stage III breast cancer has terminal cancer. “SE-AN” and “terminal anorexia nervosa" are distinct from each other, and it is incredibly important that clinicians and researchers engage in thoughtful discussion so that all patients receive the thoughtful care they deserve.
As active providers for many wonderful patients who might identify as having a longstanding eating disorder and are bravely and thoughtfully engaging in active recovery or harm reduction work, we firmly reject the idea that all people with longstanding eating disorders will succumb to their eating disorder. Recovery is possible, and we believe that anyone who wishes to keep striving for recovery should wholeheartedly be supported in doing so.
To the [Journal of Pain and Symptom Management] Editor:
I am an internist who has specialized in eating disorders for the past 16+ years, having helped run the nation’s top medical stabilization program for critically ill adults with anorexia nervosa (AN) for 8 years. Since 2016, my own outpatient clinic has specialized in the medical complications of eating disorders. I read with dismay the abstract published in May 2024 by Berg et al, “Consider concurrent hospice care for patients with terminal anorexia.” (1)
I was the lead author on a case report in the Journal of Eating Disorders in 2022, which described my care of three remarkable adults with very longstanding AN who ultimately passed away while on hospice care. (2) My coauthors were a highly respected psychiatrist in the field and one of the three described patients, an academic who desired that her voice be heard posthumously in advocacy for compassionate care at the end of life. We proposed a set of characteristics by which clinicians could potentially begin to identify the rare subset of adults with AN who would qualify for high-quality, multidisciplinary care aimed at comfort, dignity, respect of their values, and integration with family when they could no longer bear to engage in further recovery-oriented or even life-sustaining treatment. We encouraged clinicians to honor the autonomy of these patients and to support them and their families until the end, rather than abandon them which, unfortunately, is often typical practice when older adults with longstanding AN decline further care and become medically unstable.
Swiftly, feedback arrived in the form of peer-reviewed publications, social media and blog posts, and personal conversations that expressed profound concern and anger about the idea of naming “terminal AN.” While we also heard from grateful clinicians, families, and patients appreciating that a formal conversation had been initiated, we paid especially close attention to the negative feedback, as clearly there was much to be learned. My co-authors and I responded to the initial set of opposing publications (3) and subsequently proposed a broad non-pre-terminal palliative care model that might best meet the life-affirming needs of those with longstanding AN. (4)
One of the most powerful arguments I heard against our initial paper was that the whole concept of end-of-life care support being offered to those with AN could be misapplied/misappropriated and cause harm or even death, especially by those without expertise in the eating disorder field. Many groups expressed concern that individuals would be unduly relegated to "untreatable" status and told to anticipate death, when in fact patient, consistent, and expert medical and psychological care could result in improvement, recovery, and the ability to live a good life. These ongoing discussions will ultimately help our field better understand where current treatment might be missing the mark while thoughtfully addressing how we can offer compassionate care to all individuals with eating disorders.
While neither I nor the patients' families regret the care I provided, I have come to regret the way in which I shared my thoughts and support for the issue, as I overlooked an important opportunity to engage others from a variety of backgrounds to understand how this whole subject, and indeed the term "terminal AN," would be experienced. I realized I needed to pause for an entire year to listen and learn from others in the field: clinicians, families, and individuals with lived experience. What I came to understand and presented this spring at the International Conference on Eating Disorders was that the very term "terminal AN" was so hurtful and had such potential to be misused, that it needed to be discarded. I expressly said I am stopping using the term and apologized for the consternation that I caused. Ongoing discussion on this topic in the literature and among clinicians remains robust.
Unfortunately, Dr. Berg starts her abstract by stating, “Severe Enduring Anorexia Nervosa (SE-AN), also known as ‘terminal anorexia,’ is a rare, but life-threatening progression of restrictive and other eating-disordered behaviors.” This statement is patently false. Were “terminal AN” to exist as a defined stage, which I have agreed that it should not, it would be comprised of a very rare, specific population of adults who have tried high-quality treatments over many years, whose eating disorder behaviors have resulted in presently foreseeable death due to medical malnutrition and associated complications, who do not consent to ongoing or repeated treatments that have proven futile, who possess decision-making capacity as best professionals can discern it given the challenges of both a starved brain and the altered perceptions inherent to AN, and who understand that unless they begin to nourish better they will soon perish.
This rare condition differs significantly from the persistent illness vaguely categorized as “SE-AN.” This term is already starting to fade from the field, replaced by "longstanding AN.” Clinicians have repeatedly tried to define this group whose eating disorder persists despite high-quality care, but no consensus has emerged. Thoughtful publications, including voices of those with lived experience, have designated patient-centered approaches that seek to improve quality of life and amelioration of symptoms. (5,6) Where up to 20% of individuals are thought to develop a persistent form of an eating disorder, it is categorically incorrect to say that those with longstanding AN have “terminal AN.” To describe all these patients as having terminal AN is equivalent to saying that everyone with Stage III breast cancer has terminal cancer.
Unfortunately, Dr. Berg et al’s incorrect statement equating SE-AN with "terminal AN" perfectly justifies the furor around this issue and escalates resistance of the reality that some patients with AN do indeed require thoughtful end-of-life care planning. And it miseducates the public.
I don't of course possess full information about the 20-year-old patient mentioned in Dr. Berg’s abstract who received hospice care and passed away. The 30-year-old age cutoff from our original paper already sparked deep concern; writing up this young a patient as a case report for this topic will be/has already proven highly inflammatory. It provides a poor example that can cause deep harm. Eating disorders carry such high mortality that the field requires sophisticated, open-minded conversations about caring for patients with AN at end-stages of life. This will help us better honor and care for the tiny fraction of patients who, despite the best available care, truly cannot survive. I hope this letter establishes my firm rejection of the equation of “SE-AN” and “terminal AN,” reinforces my rejection of the status “terminal AN,” highlights for those who do not have expertise in eating disorders how sensitive and fraught this topic is, and emphasizes how we must humbly pause in the face of complexity to communicate carefully with each other and with direct stakeholders before publishing.