Words matter.

Especially when those words have been universally disavowed and do not accurately reflect a medical nor mental health condition. Nevertheless, they are thrown out by uneducated medical professionals in a cavalier, irresponsible and harmful manner.

In May 2024, an abstract was published in the Journal of Pain and Symptom Management, entitled, “Consider Concurrent Hospice Care for Patients with Terminal Anorexia.” Its authors were Ingrid Berg, DO, Kevin W. Craig, MD and other initials, and Lea C. Brandt PhD and other initials.

Websites list Dr. Berg’s areas of expertise as chronic diabetes, sepsis, tobacco use, chronic heart failure, insomnia, pneumonia and respiratory infections, stroke, gastrointestinal bleeding, irregular heartbeat, inpatient urinary tract infection, kidney failure and chronic cutaneous skin ulcer. They missed the “kitchen sink.” In addition, there are no references to any expertise in treating eating disorders.

Dr. Craig is at the University of Missouri School of Medicine and lists his expertise as Alzheimer’s disease, geriatrics and hospice care. On the University of Missouri website, Dr. Craig only lists 5 publications.  None involve eating disorders and Dr. Craig does not list eating disorders as any type of specialty.

Lea Brandt, PhD is also at the University of Missouri School of Medicine and lists her expertise as clinical ethics. I found 22 publications authored by Lea Brandt, PhD. NONE involved eating disorders. The only reference to eating disorders and Lea Brandt, PhD is related to the above abstract. Clinical ethics? Thy name is not Lea Brandt on this topic.

With this information, we can safely discern that these “Three Harbingers of Death” have no substantial experience with eating disorders, do not write about eating disorders, do not treat people with eating disorders, have no lived experience with eating disorders, do not understand how eating disorders impact the brain and biological system and have no expertise with eating disorders.

When one looks at the topic which apparently was presented at the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice & Palliative Nurses Association (HPNA) Annual Assembly, combined with media reports of the paper, we can readily see the false statements, the naïve and outright misunderstandings of eating disorders, the dangerous course of conduct supported by these doctors and the dark mindset which infests their souls, assuming they even have one. Their lack of understanding and knowledge on this topic is so egregious and harmful that certainly the State Boards of Medicine in Missouri and Nebraska will be contacted to determine if disciplinary consequences are appropriate for such egregious misconduct.

With this background, let’s address just some of the more open and obvious deficiencies in their thinking and presentations.

First, they believe and represent that, “Severe and Enduring Anorexia Nervosa” (”SE-AN”) is the same as and is also referred to as “Terminal Anorexia.”  The ignorance and falsity in that statement alone cannot be understated.  Good Lord!

While there is no formal consensus on a definition of SE-AN, Hay and Touyz (2018) proposed the following criteria:

(a) clinically significant functional impact;

(b) at least a 3-year duration of illness; and

(c) exposure to at least two evidence-based treatments (Hay & Touyz, 2018).

While SE-AN is clearly a debilitating illness and some do not recover or may die due to complications of AN, studies indicate that most individuals with a protracted illness course do recover (Eddy et al., 2017).

Ergo … there is no “terminal” aspect to it at all.

Contrarily, “Terminal Anorexia” was an ill-advised term proposed by Dr. Jennifer Gaudiani in February 2022. Since that time, an avalanche of papers have been published criticizing Dr. Gaudiani’s paper while also showing that the term, “Terminal Anorexia” is a non-sequiter. Its criteria was fundamentally flawed. In fact, Dr. Gaudiani has repeatedly and publicly called for the term to stop being utilized, that additional study needed to be done and she apologized for any harm which may have been caused.

In short, the unrecognized, debunked theory of “Terminal Anorexia” cannot in any way be compared to Severe and Enduring Anorexia Nervosa except for perhaps in one way … One is a direct path to immediate and certain death. The other is an enlightened, hope and faith based journey which leads to life.

Nonetheless, these three “Specters of Death” insisted on inaccurately utilizing this term with no frame of reference and even though the term has been denounced by every ethical eating disorder research professional and clinician. And yet, there are other great concerns in their presentation.

Brandt (the so-called ethics expert) is quoted as saying, “Going into ethical considerations and debate, the diagnosis of terminal anorexia is relevant,” Brandt said. “And in that there is this intersection between law and ethics that really influences medical decision making. We do have to take into account this legal framework [for] how we make decisions within the health care system. The standard of care [is] a variable, but relevant construct when determining what is ethically indicated.

The first question is how does one diagnose a medical condition that does not exist? A medical condition which has not been studied, accepted nor proposed by ANY medical or mental health organization, group, or persons (except by the initial authors who have since backed away from this term)? The non-existent condition and phrase “Terminal Anorexia” cannot be diagnosed because it is not real. It has not been proposed let alone adopted by the American Medical Association, the American Psychiatric association nor any international medical or mental health association. It is a figment of the imagination, a flight of fantasy. It is Harvey the Rabbit. Not one reputable, eating disorder expert will vouch for its authenticity.

And yet, Brandt also wishes to talk about (1). the legal framework; (2). what constitutes a standard of care and, (3). terminal anorexia? Fine. 

Going in reverse order, of those three issues, two do not even exist.  First, Terminal Anorexia is in the grave.  It was at best, a woeful term of art with no generally accepted criteria supporting it. It is now only being perpetuated by ill-advised, ignorant mental health or medical professionals (like these three) who don’t care how many people are hurt by its application. Second, there are no generally accepted standards of care for the treatment of eating disorders. There is no dispute about that. And so, that only leaves the legal framework, the sandbox in which I play. An area in which these three are about to become personally familiar … and not in a good way.

Brandt then digs her terminal grave deeper by stating, “Determining whether terminal anorexia is an acute condition versus a chronic, life-limiting illness resulting in death “becomes extremely difficult,” she said.

First, once again, terminal anorexia is a made up term with no independent medical or mental health studies supporting it and which has been lambasted by every reputable eating disorder expert. Secondly, every reputable eating disorder research professional, medical doctor and clinician classifies SE-AN as chronic.

Brandt continues with her own grave digging by stating, “Additionally, the variances around terminal anorexia nervosa criteria can make it difficult to determine what is medically appropriate, as well as ways to provide goal concordant care.” Brandt, … there you go again.  THERE IS NO TERMINAL ANOREXIA NERVOSA CRITERIA. And even if there were criteria, your very words decry this criteria when you state there are variances around the criteria.

Perhaps the greatest concern arising from the abstract, media release and presentation is, “A case report from a Midwestern academic medical center about a 20-year-old woman with SE-AN provides an example of end-of-life care for this vulnerable population that is not guideline-focused, but patient-centered. When she enrolled in hospice, the hospice organization offered to cover ongoing treatment while simultaneously providing supportive care services to her and her family.”

TWENTY (20) YEARS OLD? TWENTY (20) YEARS OLD!!! We know that the frontal lobe hasn’t even finished developing until a person reaches 25 years old. Then there is the obvious arrested development so common with addictions and eating disorders. So, who recommended hospice for a 20 year old with anorexia? What reputable medical center would accept that? And, were these three involved in any way with that decision?

These Three Riders of the Apocalypse with no appreciable eating disorder experience take a term that has been completely debunked and try to fit it into their “Escorting You to Death’s Door No Matter What” practice and obvious mindset. They are the very definition of an inexperienced population which has completely misconstrued eating disorders and they latch on to their own ignorant belief that SE-AN is terminal. They obviously do not know that terminality usually means some biological process is irreversible and with relative certainty not going to respond to any available treatments.

Some people have postulated that once the phrase, “Terminal Anorexia” was placed in the public, Pandora’s Box has been opened, the genie is out, and it is never going away. Perhaps.

But I don’t think so. Instead, I believe there must be harsh ramifications and consequences for its perpetuation by ignorant medical professionals. We can rightly deduce that this 20-year-old person with SE-AN whom was escorted to death’s door took place in the medical center where two of them practice.

And so, once more unto the breach dear friends, once more. More research will be undertaken. And then, ethics complaints to the Missouri and Nebraska Boards of Medicine. Ethics complaints to the university medical centers where these people practice. Ethics complaints to every organization in which they belong. Social media blitzes. The irony of filing an ethics complaint against a person who specializes in clinical ethics is delicious.

And yet, these three were given the opportunity to discuss this matter with some of the foremost experts in the eating disorder community. An opportunity for enlightenment and wisdom. An opportunity to study further these complex issues. To date, they have not taken advantage of that offer and opportunity.

For those medical and mental health professionals who insist on using that term and in doing so, hurt a very vulnerable population, their patients, you will be called to account for your ignorance and your negligence. Research and ethics complaints await and are being processed.

These three are the first.