Thoughts on “terminal anorexia nervosa”

Eating disorders are complex processes to live with and recover from – I know firsthand from my struggle and subsequent healing from one. They begin for multifaceted reasons, including genetic factors, trauma, the media’s fascination with thin bodies, and the medical community’s false belief that thinness equates to health. Treatment and support for eating disorders are vital, but due to the dysfunctional, inequitable, and profit-driven healthcare system in the United States, even when treatment is possible, there is no consensus on what high-quality care is.

Anorexia nervosa is an eating disorder first conceptualized in the nineteenth century by British physician William Withey Gull. In 1952, the Diagnostic and Statistical Manual for Mental Disorders, first edition (DSM-1), categorized anorexia as a “psychogenic reaction,” and in 1968, the DSM-2 classified it as a “feeding disturbance.” Anorexia and other eating disorders were misunderstood and little discussed until 1983, when the American singer Karen Carpenter died of heart failure as a result of her prolonged battle with anorexia. Since then, anorexia has received considerably more attention from the medical community and the general public, leading to greater interest in treatment, research, and recovery.

Nevertheless, there is still significant debate among specialists regarding treatment for anorexia nervosa. Nowhere has this been more evident than in the recent work of Dr. Jennifer L. Gaudiani, a medical doctor and Certified Eating Disorder Specialist. In February 2022, Gaudiani was the lead author of an article published in the Journal of Eating Disorders that was the first to propose the idea of “terminal” anorexia nervosa.^[1] Gaudiani’s concept of “terminal” anorexia asserts that a small number of individuals with anorexia who have persistently and unsuccessfully engaged with eating disorder treatment, may be permitted to decline treatment if they accept death as the natural outcome of their eating disorder, and if certified healthcare provider deems them in possession of decision-making capacity. Gaudiani also asserts that the use of medical aid in dying should be an option for individuals with anorexia in places where such aid is generally legal. This essay will examine the proposed diagnostic category of “terminal” anorexia and express my concern about linking eating disorders, treatment futility, and terminal diagnoses.

Anorexia nervosa

Anorexia nervosa, commonly referred to simply as anorexia, is a mental illness and one of several eating disorders. Characterized by a distorted perception of body weight or shape, fear of weight gain, and restriction of caloric intake, anorexia affects how individuals see, think, and feel about themselves, and it has the potential for severe medical complications. Although anorexia may be the most culturally visible eating disorder, it is actually less common than other disorders such as bulimia nervosa and binge eating disorder.

Treatment for anorexia typically aims to restore weight (if necessary) and improve eating disorder thoughts.^[2] Current data on recovery from anorexia suggests that 30 percent of individuals with anorexia will recover in ten years, and an additional 40 percent will recover after another ten years.^[3] Although up to 20 percent of individuals may eventually die from medical consequences associated with anorexia, it was previously not described or understood as potentially terminal because anorexia is psychiatrically treatable, and its medical consequences are reversible with medical stabilization and nutrition.

A proposed definition for terminal anorexia nervosa

In the article, Gaudiani and her co-authors propose that terminal anorexia nervosa is characterized by the following “clinical characteristics”: 1) a diagnosis of anorexia nervosa, 2) an age of 30 or older, 3) a prior persistent engagement in high-quality multidisciplinary eating disorder care, and 4) a consistent, clear expression by an individual who possesses decision-making capacity that they understand further treatment to be futile, and that they subsequently choose to stop trying to prolong their lives, instead accepting that death will be the natural outcome.

Gaudiani et al. include three case presentations—all former patients of Gaudiani’s—to illustrate their conception of terminal anorexia. The individuals in the case studies are described as having “severe and enduring anorexia nervosa” (abbreviated as SE-AN), a subset of anorexia nervosa that is not well defined or understood. Consequently, there may be variable use of the term among researchers, mischaracterizing some individuals as having a lesser chance of recovery.^[4] Even individuals with SE-AN often do not have medical complications that are “imminently life-threatening” and “with no treatment at all, patients may still survive for prolonged periods of time.”^[5] Still, a terminal phase, applied to some cases of anorexia, may seem at face value to make sense, given that anorexia has the second highest mortality rate of any mental illness after opioid use disorder, and memoirs, documentaries, and publications all describe the impact that eating disorders have on quality of life and health.

Gaudiani’s conception of “terminal” anorexia, however, contains ethical considerations which require further examination. While she argues that an individual must have the mental capacity to decide that further treatment will be futile, there is considerable debate about whether people with anorexia have the capacity to decline treatment and life-saving medical care, let alone be capable of understanding treatment as “futile.”^[6] Medical decision-making is described as “task-specific,” so a person may have the capacity in one arena but lack it in another.

Futile eating disorder treatment: who decides?

In the case of anorexia, treatment futility is a relatively novel and difficult-to-define concept because no clinician (or the person experiencing anorexia) can say with certainty that there is no chance for any improvement in the trajectory of the eating disorder. Generally, treatment futility is the idea that people who have had anorexia for years have cycled within higher levels of care without recovering and, therefore, additional treatment will likely be ineffective.^[7] Higher levels of care are often life-saving, and many people fully recover, but there are no “gold standard” psychotherapies for treating adults with anorexia.^[8] Given the seriousness of eating disorders, people might assume that hospital-based or residential treatment is readily available for those who need it. However, there are financial, cultural, and geographic barriers to eating disorder treatment, with eight out of ten people never receiving specialized treatment. Additionally, there is a lack of clinicians in the community with expertise in eating disorders, making consistent care outside a treatment program difficult.^[9] I am thus strongly of the belief that clinicians should strive for more accessible and effective treatment rather than advocate for a terminal anorexia prognosis.

My experience

Trauma is known to be a predisposing factor for eating disorders, and I cannot help but think that was the case for me. When I was eleven years old, I experienced a traumatic medical event, one of many such events subsequent to the surgeries and distressing follow-up appointments related to my intersex variation. My struggle with eating disorders—first anorexia nervosa, then bulimia—started in seventh grade, and I was entrenched in and dedicated to my eating disorder for many years. Due to my co-occurring anxiety and depression, multiple inpatient treatments, and my inability to follow treatment recommendations, my doctors frequently described my prognosis for recovery as “poor.” ​

Even though I never explicitly set out to “recover” from my eating disorder, I stumbled upon recovery after realizing much of my identity centered on anorexia.^[10] My eating disorder felt like a vital sense of who I was, a friend, something I could turn to in times of doubt. Eating disorders can, at times, feel comfortable and safe, but they can also be lonely, cold, and painful, having a paradoxical effect in that they drain other aspects of life, creating a distressing one-way world that makes the future seem hopeless. Eating disorders also thrive off secrecy and competitiveness, which can result in one not recognizing the severity of their illness or comparing it to others’ eating disorders. As a result, recovery from an eating disorder often seemed like it could only function as a dichotomy: Either I am struggling with an eating disorder, or I have recovered from one.

Over time, however, I have seen that there can be a middle ground and that eating disorder recovery is not all or nothing. Connecting with my intersex support group allowed me to think about the intersex part of my identity and manage my life of medical trauma I had suppressed and also begin to manage my eating disorder. Drawing from these experiences, I have come to the conclusion that individuals with SE-AN should be afforded the hope that trauma resolution may mitigate the cyclical nature of eating disorders, particularly when they are the foundation of the eating disorder.

My concerns about labeling anorexia nervosa as terminal

I have read the proposed framework for terminal anorexia many times since its publication in 2022 after its subsequent spread on social media. When I first encountered Gaudiani’s article, I felt sad and confused that clinicians had deemed the recovery potential of the individuals in her study to be futile. Rather than continuing to instill hope for recovery and life, a doctor permitted the individuals’ eating disorders to continue unmitigated, eventually leading to their deaths. The article argues that the diagnosis of terminal anorexia nervosa should only apply to a subset of people. However, it is demoralizing to a host of people with active or recovered eating disorders to know that providers in this field believe that some of their patients are beyond hope.

It is unclear to me how someone with SE-AN can objectively understand treatment as futile and “accept” death. I believe the idea of terminal anorexia nervosa is counterintuitive for everyone: most medical complications from anorexia are reversible; there is no consensus on the definition of recovery from anorexia; and those with eating disorders often feel hopeless about recovery. Some people with anorexia will not recover, but that does not equate to a predictable and inevitable death within six months. Eating disorders are complicated, for both those with the disorder and for their families and friends, and the proposal of terminal anorexia only makes experiencing and recovering from an eating disorder more difficult. We need providers to have hope for our recovery from eating disorders, even – and especially – if we may at times feel hopeless.

Marissa Adams

Marissa has been involved in advocacy and peer support for intersex people also known as variations in sex characteristics, for nearly ten years. She is also passionate about healthcare reform and mental health advocacy related to eating disorders and making treatment more accessible. She has a bachelor's degree in psychology and hopes to attend graduate school.

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