Eating disorders and palliative care specialists require definitional consensus and clinical guidance regarding terminal anorexia nervosa: addressing concerns and moving forward

Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

Severe and enduring anorexia nervosa is a chronic condition of undetermined duration and course.

“Most importantly, SE-AN is a chronic condition of undetermined duration and course.”

Classified as probably not a substantial claim. May combine two claims.

Terminal anorexia nervosa is a time-limited condition marked by progressive deterioration and fatal outcome, most often occurring during a late phase of severe and enduring anorexia nervosa.

“In contrast, the much less common stage of terminal AN, which most often occurs during a late phase of SE-AN, is a time-limited condition marked by progressive deterioration and fatal outcome.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Snowballing procedures are good alternatives to database searches.

“As initial strategies, these procedures have been shown to be good alternatives to the use of database searches [14, 15].”

• cites [14] Lecy J, Beatty KE. Representative literature reviews using constrained snowball sampling and citation network analysis. 2012. https://ssrn.com/ab. sourceNot checked yet

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• cites [15] Wohlin C. Guidelines for snowballing in systematic literature studies and a replication in software engineering. In Proceedings of the 18th international conference on evaluation and assessment in software engineering. 2014. p. 1–10. https://edisciplinas.usp.br/pluginfile.php/6254288/mod_resource/content/3/Wohlin%20-%202014%20-%20Guidelines%20for%20Snowballing%20in%20Systematic%20Literature%20Studies%20and%20a%20Replication%20in%20Software%20Engineering.pdf. Accessed 16 Jan 2022.Not checked yet

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Probably not a substantial claim: may not pass S4 (based).

Patients die of anorexia and its complications despite maximal therapies.

“As we have tried to demonstrate in the introduction, patients die of anorexia and its complications despite maximal therapies.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Premature deaths occur in 5-20% of patients with anorexia nervosa.

“Premature deaths are estimated to occur in 5–20% of patients with anorexia nervosa (AN).”

• Also stated in: § Introduction · hedged

  “Premature deaths are estimated to occur in 5–20% of patients with AN [7], with this broad range reflecting differences in the specific patient population studied.”

• cites [7] Russell J, Mulvey B, Bennett H, Donnelly B, Frig E. Harm minimization in severe and enduring anorexia nervosa. Int Rev Psychiatry. 2019;31(4):391–402. https://doi.org/10.1080/09540261.2019.1601073. sourceNot checked yet

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May combine two claims.

Rejecting the notion of terminal anorexia nervosa does not change the mortality rate or the clinical reality that some patients will choose to seek compassionate support at the end of their lives.

“Rejecting the notion of “terminal AN” does not change the mortality rate or clinical reality that some patients will choose to seek compassionate support at the end of their lives.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Individuals with anorexia nervosa are 18 times more likely to die by suicide.

“Individuals with AN are 18 times more likely to die by suicide [10].”

• cites [10] Smith AR, Zuromski KL, Dodd DR. Eating disorders and suicidality: what we know, what we don’t know, and suggestions for future research. Curr Opin Psychol. 2018;22:63–7. https://doi.org/10.1016/j.copsyc.2017.08.023. sourceNot checked yet

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Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

Accurately identifying a population who may reasonably be expected to die of an illness encourages vital conversations between patients and providers, including conversations that may portend more intensive treatments and eventual recovery.

“Being able to accurately identify a population who may reasonably be expected to die of an illness is a way of encouraging vital conversations between patients and their providers, including conversations that may portend more intensive treatments and eventual recovery.”

May combine two claims.

Some patients with severe and enduring anorexia nervosa ultimately decide they have suffered too long and no longer want further active treatments, acknowledging that refusing further intensive treatments means they will die.

“At various points in their illness trajectories, some patients ultimately decide that they have suffered too long and too deeply.”

• Also stated in: § Introduction · hedged

  “They may no longer want to subject themselves to further active treatments inevitably followed by prompt relapses and ongoing anguish, and even acknowledge that refusing further intensive treatments means they will die.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

In that cohort, older age predicted mortality, with mean age at death 41.3 years and the highest standardized mortality ratio of 26 among those admitted at ages 30-34.

“Older age predicted mortality, with mean age at death 41.3 (± 15.3) years; those admitted between ages 30–34 had the highest SMR of 26.”

• cites [8] Guinhut M, Godart N, Benadjaoud MA, Melchior JC, Hanachi M. Five-year mortality of severely malnourished patients with chronic anorexia nervosa admitted to a medical unit. Acta Psychiatr Scand. 2021;143(2):130–40. https://doi.org/10.1111/acps.13261. sourceNot checked yet

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Probably not a substantial claim: may not pass S3 (load-bearing).

In a prospective cohort of 384 patients with severe anorexia nervosa requiring inpatient hospitalization, the standardized mortality ratio was 15.9 for women and 22.4 for men.

“A prospective cohort of 384 patients with severe AN requiring inpatient hospitalization had a standardized mortality ratio (SMR) for women of 15.9 and for men 22.4.”

• cites [8] Guinhut M, Godart N, Benadjaoud MA, Melchior JC, Hanachi M. Five-year mortality of severely malnourished patients with chronic anorexia nervosa admitted to a medical unit. Acta Psychiatr Scand. 2021;143(2):130–40. https://doi.org/10.1111/acps.13261. sourceNot checked yet

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Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

The critiques of the authors' presentations all rest on substantially questionable premises.

“Our analysis reveals that the critiques of our presentations all rest on substantially questionable premises.”

Probably not a substantial claim: may not pass S2 (checkable).

Severe and enduring anorexia nervosa and the terminal phase of anorexia nervosa are distinct conditions.

“To be clear, we see SE-AN and the terminal phase of AN as distinct conditions.”

Probably not a substantial claim: may not pass S4 (based). May combine two claims.

A subset of patients with severe and enduring anorexia nervosa are repeatedly subjected to higher level of care treatments that have previously proven futile and that some patients experience as traumatizing and intolerable.

“A subset of patients with SE-AN are repeatedly subjected to higher level of care treatments that have previously proven futile in their care and that some patients experience as traumatizing and intolerable.”

Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

In that cohort, somatic causes accounted for 43% of deaths and 11.5% of deaths were attributed to suicide.

“Somatic (medical) causes accounted for 43% of deaths, with 11.5% of deaths attributed to suicide [8].”

• cites [8] Guinhut M, Godart N, Benadjaoud MA, Melchior JC, Hanachi M. Five-year mortality of severely malnourished patients with chronic anorexia nervosa admitted to a medical unit. Acta Psychiatr Scand. 2021;143(2):130–40. https://doi.org/10.1111/acps.13261. sourceNot checked yet

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Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing).

Some clinicians may be influenced by cognitive and affective biases and/or concerns regarding social or professional approbation, which might lead to denial.

“Some may be influenced by a host of cognitive and affective biases and/or concerns regarding social or professional approbation [25–27], which might lead some clinicians to forms of denial, in which they essentially avoid facing the realities of these terminal states.”

• cites [25] Croskerry P, Campbell SG. A cognitive autopsy approach towards explaining diagnostic failure [published correction appears in Cureus. 2021 Sep 13;13(9):c48]. Cureus. 2021;13(8):17041. https://doi.org/10.7759/cureus.17041. sourceNot checked yet

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• cites [26] Croskerry P, Clancy M. Advancing diagnostic excellence: the cognitive challenge for medicine. BMJ. 2022;376:o799. https://doi.org/10.1136/bmj.o799. sourceNot checked yet

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• cites [27] Yager J, Ritvo AD, MacPhee ER. Psychiatrists’ cognitive and affective biases and the practice of psychopharmacology: why do psychiatrists differ from one another in how they view and prescribe certain medication classes? J Nerv Ment Dis. 2022. https://doi.org/10.1097/NMD.0000000000001548. sourceNot checked yet

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Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

This theoretical implication prevents the identification and proper care of those who are presently dying of severe and enduring anorexia nervosa, do not wish to die by suicide, and do not wish to return to a higher level of care.

“This theoretical implication prevents the identification and proper care of those who are presently dying of SE-AN, do not wish to die by suicide, and do not wish to return to a higher level of care.”

Probably not a substantial claim: may not pass S4 (based).

Terminal anorexia nervosa applies only to a rare subpopulation of all those with severe and enduring anorexia nervosa.

“Given the vital importance of this term being applied strictly and rigorously, we wish to identify explicitly that terminal AN applies only to a rare subpopulation of all those with SE-AN.”

• AssumptionRests on an assumption: The vast majority of individuals with anorexia nervosa of all ages and chronicities will fully recover.

Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

It is not uncommon for even the most exhausted patient in this context to examine their own autonomy and choose to keep working for a meaningful recovery.

“It is not uncommon for even the most exhausted patient in this context to examine their own autonomy and choose to keep working for a meaningful recovery.”

May combine two claims.

In severe and enduring anorexia nervosa, if a patient with capacity clearly and consistently accepts that death will be the outcome and declines disease-directed therapies, starvation leads to death and is itself a terminal condition.

“The same is true in SE-AN. Should a patient affirm clearly, consistently, in accordance with their values, and in acceptance that the outcome of their decision is death, that they will not pursue disease-directed therapies, starvation leads to death and is itself a terminal condition.”

Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

It is only when the palliative approach does not work, and death becomes imminent, that the patient meets the designation for terminal anorexia nervosa.

“It is only when the palliative approach does not work, and death becomes imminent, that the patient meets the designation for terminal AN.”

• AssumptionRests on an assumption: A small subset of patients with severe and enduring anorexia nervosa cannot find safety in harm reduction, seeming to lack a “basement floor” such that any eating disorder behavior leads swiftly to medical instability.

Probably not a substantial claim: may not pass S2 (checkable).

Tying definitions of terminal anorexia nervosa to access to specific types of treatment for specific lengths of time disproportionately burdens patients with fewer means who may not have the resources to seek continuous expert-level eating disorder care for years or decades.

“In that light, tying definitions of terminal AN to access to specific types of treatment for specific lengths of time disproportionately burdens patients with fewer means who may not have the resources to seek continuous expert-level eating disorder care for years or decades.”

Probably not a substantial claim: may not pass S4 (based). May combine two claims.

In renal failure, anuria proceeds to death within days to short weeks, but dialysis meaningfully extends life on the order of years to decades.

“To take an example from somatic medicine, consider renal failure. Anuria proceeds to death within days to short weeks. However, dialysis meaningfully extends life on the order of years to decades.”

Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

Some patients might learn about the idea of "terminal AN" and attend only to the first three criteria, ignoring the fourth that involves the patient proactively choosing to stop fighting.

“Conversely, some patients might learn about the idea of “terminal AN” and attend only to the first three criteria (ignoring the fourth that involves the patient proactively choosing to stop fighting).”

Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

A decision to decline further treatment must be made under the care of highly expert eating disorders providers, because they are most likely to offer strategies that may permit reengagement with recovery.

“Vitally, such a decision must be made under the care of highly expert eating disorders providers, because they are the most likely to be able to offer seemingly hopeless patients the strategies that may indeed permit reengagement with recovery efforts.”

Probably not a substantial claim: may not pass S3 (load-bearing).

Psychiatric patients who participate in medical aid in dying are greatly outnumbered by psychiatric patients who die by suicide.

“It would be useful to acknowledge that in context, psychiatric patients who participate in MAID are still greatly outnumbered by the number of psychiatric patients who die by suicide.”

Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

Labeling a condition as terminal does not precipitate a terminal event any more than labeling a cancerous condition as terminal causes the cancer to grow.

“It does not precipitate a terminal event any more than labeling a cancerous condition as terminal causes the cancer to grow.”

Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

To question a patient's capacity when they are making decisions discordant with a practitioner's values, but to accept their capacity when they are making concordant decisions, is a type of culture bias.

“Additionally, to question a patient’s capacity when they are making decisions discordant with a practitioner’s values, but to accept their capacity when they are making concordant decisions, is a type of culture bias.”

Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

To negate the concept that anorexia nervosa can have a terminal component is to imply that some other person, intervention, or approach would have prevented that death.

“To negate the concept that AN can have a terminal component is to imply that some other person, intervention, or approach would have prevented that death.”

Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

The implied rise in medical aid in dying requests for psychiatric conditions in Europe may be better characterized as evidence that there existed a degree of intractable suffering which now has recourse.

“Furthermore, the implied rise in MAID requests for psychiatric conditions in Europe may be better characterized as evidence that there existed a degree of intractable suffering which now has recourse.”

Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

This essentially impossible scenario is made even more unlikely when we take into account that only individuals with the capacity to pay for such care (via insurance or private pay) could actually access it.

“This essentially impossible scenario is made even more unlikely when we take into account that only individuals with the capacity to pay for such care (via insurance or private pay) could actually access it.”

May combine two claims.

In the Elzakkers et al. study of 70 adult women with anorexia nervosa, clinical judgment found 46 with full mental capacity and 24 with diminished mental capacity, and the MacCAT-T found 43 with full mental capacity and 25 with diminished capacity.

““Based on clinical judgment, 46 patients had full mental capacity and 24 diminished mental capacity. Based on the MacCAT-T, 43 patients had full mental capacity and 25 diminished capacity.””

• cites Elzakkers et al. [30] Elzakkers I, Danner UN, Grisso T, Hoek HW, van Elburg AA. Assessment of mental capacity to consent to treatment in anorexia nervosa: a comparison of clinical judgment and MacCAT-T and consequences for clinical practice. Int J Law Psychiatry. 2018;58:27–35. sourceNot checked yet

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Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

Respectful, thoughtful conversations over time with a trusted expert clinician can allow the patient to reclaim ownership of recovery.

“Having respectful, thoughtful conversations over time with a trusted expert clinician about struggles, victories, disappointments, quality of life, goals, and values can allow the patient to reclaim ownership of the recovery, where the clinician acknowledges there will be support but no pressure to retry a higher level of care despite meaningful medical risk.”

Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

The very fact of a highly sensitive patient's intolerance to higher level of care settings and refusal or inability to persist in such treatment after age 30 is salient to their experience of the world and to their suffering.

“One must also not discount that the very fact of a highly sensitive patient’s intolerance to higher level of care settings and refusal or inability to persist in such treatment—not in the early years of an eating disorder but after age 30—is in fact salient to their experience of the world and to their suffering.”

Probably not a substantial claim: may not pass S3 (load-bearing).

The speculative, theoretical paper of van Elburg et al. implying that patterns of emotional arousal in patients with anorexia nervosa add to their impaired decision-making contains no additional data.

“By contrast, the speculative, theoretical paper of van Elburg et al. [20] implying that patterns of emotional arousal in patients with AN adds to their impaired decision-making, unfortunately contains no additional data.”

• cites van Elburg et al. [20] van Elburg A, Danner UN, Sternheim LC, Lammers M, Elzakkers I. Mental capacity, decision-making and emotion dysregulation in severe enduring anorexia nervosa. Front Psychiatry. 2021;12:545317. sourceNot checked yet

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Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

Unless the patient otherwise meets all the criteria, including vital criterion 4 regarding their personal choice not to continue treatment while knowing death may follow, the term terminal anorexia nervosa cannot be misused.

“However, unless the patient otherwise meets all the criteria however, including that vital criterion 4 regarding their personal choice not to continue treatment while knowing death may follow, the term cannot be misused.”

Probably not a substantial claim: may not pass S4 (based). May combine two claims.

Many patients meet the first three criteria and go on to full recovery or a satisfactory life on a harm reduction plan.

“Many patients meet these criteria and do beautifully, going on to full recovery or a satisfactory life on a harm reduction plan.”

Probably not a substantial claim: may not pass S2 (checkable).

Denying terminal anorexia nervosa would deny patients and families options of more dignified deaths compared to prolonged dying from complications of inanition or stigmatized suicide.

“They would deny these patients and their families the options of more dignified deaths compared to alternatives such as the suffering and anguish of prolonged dying from complications of inanition or from stigmatized and shaming suicide.”

Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

Denying patients validation that their condition may proceed to death creates a therapeutic rift that may itself be demoralizing.

“Further, to deny patients the validation that their condition may proceed to death is to create a therapeutic rift that may itself be demoralizing.”

Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

It can be validating and recovery-motivating for a patient with severe and enduring anorexia nervosa to hear the specifics of how if they do not make changes, they will indeed die.

“Indeed, where patients with SE-AN frequently experience the distortion of not being “sick enough” to merit behavior change or optimal care, it can be validating and recovery-motivating for a patient to hear the specifics of how if they do not make changes, they will indeed die.”

Classified as probably not a substantial claim. May combine two claims.

The proposed criteria require but do not presuppose the type or duration of high-quality eating disorder care.

“For that reason, the proposed criteria require but do not presuppose the type or duration of high-quality eating disorder care to protect disadvantaged populations from the burden of diminished access to end-of-life care resources.”

Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

An individual who wavers in their conviction or expresses different goals to different people is not yet ready to receive the appellation of terminal anorexia nervosa.

“An individual who wavers in their conviction or expresses different goals to different people is not yet ready to receive the appellation of terminal AN.”

Classified as probably not a substantial claim.

The proposed definition of terminal anorexia nervosa would be overly broad if it were limited to diagnosis of anorexia nervosa, age over 30, and prior receipt of high-quality care.

“We agree of course that the definition would be overly broad if it were limited to diagnosis of AN, age over 30, and prior receipt of high-quality care.”

Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing).

Delineating terminal anorexia nervosa might encourage patients to discuss their concerns and feelings about futility and terminality with their clinicians.

“To the contrary, delineating terminal AN might equally encourage patients to discuss their concerns and feelings about futility and terminality with their clinicians, concerns that they may previously have hidden from their clinicians.”

Probably not a substantial claim: may not pass S2 (checkable).

If a practitioner believes that a patient has the capacity to elect between different types of disease-directed approaches, it would be a logical strain to suggest they do not have the capacity to elect a palliative-only approach.

“If a practitioner believes that a patient has the capacity to elect between different types of disease-directed approaches, it would be a logical strain to suggest they do not have the capacity to elect a palliative-only approach.”

Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

Some clinicians might publicly voice denial that terminal anorexia nervosa exists while privately acknowledging that terminality exists for some patients.

“Some clinicians might publicly voice denial that terminal AN exists while privately acknowledging that terminality exists for some patients.”

May combine two claims.

Clinicians who treat anorexia nervosa cannot predict who will recover or when, nor identify those who will not be able to survive.

“This critical appraisal rightly asserts that clinicians who treat AN cannot predict who will recover or when, nor identify “those who will not be able to survive”, as most medical complications are reversible with nutritional rehabilitation and expert care.”

• cites [5] Guarda AS, Hanson A, Mehler P, Westmoreland P. Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined. J Eat Disord. 2022;10(1):79. https://doi.org/10.1186/s40337-022-00599-6. sourceNot checked yet

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• cites [6] Riddle M, O’Melia AM, Bauschka M. First, do no harm: the proposed definition of “terminal anorexia” is fraught with danger for vulnerable individuals. J Eat Disord. 2022;10(1):81. https://doi.org/10.1186/s40337-022-00605-x. sourceNot checked yet

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Probably not a substantial claim: may not pass S2 (checkable).

Acknowledging terminal anorexia nervosa allows a richer, more nuanced conversation around patients' goals and values.

“Rather, this acknowledgement allows a richer, more nuanced conversation around patients’ goals and values.”

Probably not a substantial claim: may not pass S2 (checkable), S4 (based). May combine two claims.

By being able to identify these patients, clinicians might be better positioned to reduce their suffering through palliation to improve quality of life and then, for those who progress to this point, through hospice care as they approach their deaths.

“By being able to Identify these patients, clinicians might be better positioned to reduce their suffering through palliation to improve quality of life and then for those who progress to this point, through hospice care as they approach their deaths.”

• AssumptionRests on an assumption: A small subset of patients with severe and enduring anorexia nervosa cannot find safety in harm reduction, seeming to lack a “basement floor” such that any eating disorder behavior leads swiftly to medical instability.

Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

Acceptance of the idea that terminal anorexia nervosa exists will be higher among clinicians who have had extensive direct, ongoing, personal, frequent, prolonged bedside experience with patients who refuse more active treatments at this stage of their disorder.

“We anticipate that acceptance of the idea that terminal AN exists will be higher among certain groups of clinicians: those who have had extensive direct, ongoing, personal, frequent, prolonged bedside experience with patients who refuse more active treatments at this stage of their disorder.”

May combine two claims.

Compulsory treatment is not the solution for all patients with diminished mental capacity who refuse treatment; in some situations, it may do more harm than good.

“Van Elburg et al. [20] state,”CT [compulsory treatment] is not the solution for all patients with diminished MC [mental capacity] who refuse treatment. In some situations, it may do more harm than good.””

• cites [20] van Elburg A, Danner UN, Sternheim LC, Lammers M, Elzakkers I. Mental capacity, decision-making and emotion dysregulation in severe enduring anorexia nervosa. Front Psychiatry. 2021;12:545317. sourceNot checked yet

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Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based). May combine two claims.

The reality of outpatient care is different, as the outpatient provider controls almost nothing and relies on relationship with the patient, communication with a strong multi-disciplinary team, and engagement with the family to try and support change over time.

“However, the reality of outpatient care is different, as the outpatient provider controls almost nothing and relies on relationship with the patient, communication with a strong multi-disciplinary team, and engagement with the family to try and support change over time.”

Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

Guarda et al. advance no evidence to support concerns about social contagion of suicide and unscrupulous aid-in-dying services to anorexia patients.

“Guarda et al. express forebodings around social contagion of suicide and ‘concierge’ practitioners unscrupulously providing aid-in-dying services to anorexia patients but advance no evidence to support these concerns.”

May combine two claims.

Highly regarded eating disorder authorities now consider anorexia nervosa to be a "metabolo-psychiatric condition," a claim not generally made for the other psychiatric disorders listed.

“Indeed, highly regarded eating disorder authorities now consider AN to be a “metabolo-psychiatric condition,” a claim not generally made for the other psychiatric disorders listed [24].”

• cites [24] Bulik CM, Carroll IM, Mehler P. Reframing anorexia nervosa as a metabo-psychiatric disorder. Trends Endocrinol Metab. 2021;32(10):752–61. https://doi.org/10.1016/j.tem.2021.07.010. sourceNot checked yet

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