Involuntary treatment in patients with anorexia nervosa: utilization patterns and associated factors.

BACKGROUND: A subgroup of patients with anorexia nervosa (AN) undergoing involuntary treatment (IT) seems to account for most of the IT events. Little is known about these patients and their treatment including the temporal distribution of IT events and factors associated with subsequent utilization of IT. Hence, this study explores (1) utilization patterns of IT events, and (2) factors associated with subsequent utilization of IT in patients with AN. METHODS: In this nationwide Danish register-based retrospective exploratory cohort study patients were identified from their first (index) hospital admission with an AN diagnosis and followed up for 5 years. We explored data on IT events including estimated yearly and total 5-year rates, and factors associated with subsequent increased IT rates and restraint, using regression analyses and descriptive statistics. RESULTS: IT utilization peaked in the initial few years starting at or following the index admission. A small percentage (1.0%) of patients accounted for 67% of all IT events. The most frequent measures reported were mechanical and physical restraint. Factors associated with subsequent increased IT utilization were female sex, lower age, previous admissions with psychiatric disorders before index admission, and IT related to those admissions. Factors associated with subsequent restraint were lower age, previous admissions with psychiatric disorders, and IT related to these. CONCLUSIONS: High IT utilization in a small percentage of individuals with AN is concerning and can lead to adverse treatment experiences. Exploring alternative approaches to treatment that reduce the need for IT is an important focus for future research.

Conceptualisation of severe and enduring anorexia nervosa: a qualitative meta-synthesis.

BACKGROUND: Severe and enduring anorexia nervosa (SE-AN) is amongst the most impairing of all mental illnesses. Collective uncertainties about SE-AN nosology impacts treatment refinement. Qualitative research, particularly lived experience literature, can contribute to a process of revision and enrichment of understanding the SE-AN experience and further develop treatment interventions. Poor outcomes to date, as evidenced in clinical trials and mortality for people with SE-AN (1 in 20) demonstrate the need for research that informs conceptualisations and novel treatment directions. This interpretative, meta-ethnographic meta-synthesis aimed to bridge this gap. METHODS: A systematic search for qualitative studies that explored the AN experiences of people with a duration of greater than 3 years was undertaken. These studies included those that encompassed phenomenology, treatment experiences and recovery. RESULTS: 36 papers, comprising 382 voices of SE-AN experiences informed the meta-ethnographic findings. Four higher order constructs were generated through a synthesis of themes and participant extracts cited in the extracted papers: (1) Vulnerable sense of self (2) Intra-psychic processes (3) Global impoverishment (4) Inter-psychic temporal processes. Running across these meta-themes were three cross cutting themes (i) Treatment: help versus harm, (ii) Shifts in control (iii) Hope versus hopelessness. These meta-themes were integrated into conceptualisations of SE-AN that was experienced as a recursive process of existential self-in-relation to other and the anorexia nervosa trap. CONCLUSIONS: The alternative conceptualisation of SE-AN proposed in this paper poses a challenge to current conceptualisations of AN and calls for treatments to engage with the complex intra and inter-psychic processes of the SE-AN, more fully. In doing so, clinicians and researchers are asked to continue to be bold in testing novel ideas that may challenge our own rigidity and attachment to dominant paradigms to best serve the individual person with SE-AN. The 'global impoverishment of self', found in this synthesis of AN experiences, should inform proposed diagnostic criteria for SE-AN.

Severe and enduring anorexia nervosa: Update and observations about the current clinical reality.

Several objectives underlie the current article. First, to review historical diagnostic issues and clinical strategies for treating SE-AN. Second, to provide an overview of recent evidence informed strategies and clinical innovations for the treatment of SE-AN. Third, based on the authors' collective clinical and research experience, we offer eight observations that we believe capture the current clinical experience of patients with SE-AN. Some of these observations represent empirically testable hypotheses, but all are designed to generate a meaningful discussion about the treatment of this group of individuals with eating disorders. Finally, we hope to call clinicians, scientists, professional organizations, advocates, and policy makers to action to attend to critical issues related to the care of individuals with SE-AN. We believe that an international discussion could clarify areas of need for these patients and identify opportunities for clinical innovation that would enhance the lives of individuals with SE-AN and their families.

Severe and enduring anorexia nervosa: No easy solutions.

There is currently no evidence-based definition of severe and enduring anorexia nervosa (SE-AN) with which to reliably inform clinical practice and research. Indeed, data on the effect of AN severity and duration on treatment outcome are inconsistent. A large group of patients with SE-AN are repeatedly unsuccessfully managed with the available eating disorders treatments and have no access to adequate treatment for their illness. Cognitive behavioral therapy (CBT) adapted for SE-AN has been designed to enhance quality of life and reduce harm rather than promoting weight gain in such patients, and has had some success. However, a percentage of patients with SE-AN achieves remission, or at least returns to a normal weight range, with available evidence-based treatments for eating disorders, such as enhanced CBT (CBT-E). It would therefore be worth conducting a large-scale randomized controlled trial comparing CBT adapted for SE-AN with CBT-E to assess their relative acceptability; efficacy, including their effect on quality of life and medical stability; cost-effectiveness; and the treatment response moderators that might allow better matching of patients with SE-AN to a treatment oriented either to harm reduction or to change.

Evidence-based treatments remain the best intervention for good long-term outcome of severe and enduring anorexia nervosa.

More research is needed about response to specialist treatments for severe and enduring anorexia nervosa. Current evidence suggests those with severe and enduring anorexia nervosa respond to evidence-based treatments and continue to recover over decades. In the absence of clear guidelines to the contrary and given our understanding of the superior efficacy of specialist treatments over more eclectic treatment choices, it is our responsibility to continue to train and supervise clinicians to deliver evidence-based treatments, irrespective of the variant of anorexia nervosa.

Severe and enduring anorexia nervosa: Fertile ground for iatrogenic development.

Care providers and individuals with severe and enduring anorexia nervosa (SE-AN) are weathering a perfect storm in which the sickest patients receive the least evidence-based treatment and iatrogenic factors play a significant role. Examining access to treatment from an ethical perspective is one strategy for developing more objective protocols related to the care of individuals with SE-AN.

A Danish register-based study on involuntary treatment in anorexia nervosa.

OBJECTIVE: Involuntary treatment is controversial and widely debated, but remains a significant component of treatment for severe anorexia nervosa. Given how little is known about this topic, we describe the frequency of various involuntary measures in a national cohort of all patients diagnosed with anorexia nervosa. In a subsample of patients, we explored predictors of the first involuntary measure recorded. METHOD: Descriptive statistics and Cox proportional hazard analyses were conducted using the national registers of Denmark covering the total population. Data from the National Patient Register and the Psychiatric Central Research Register including all psychiatric visits from 1969 onwards were merged with data from the National Register on Coercion covering 1999 onward. Involuntary measures registered between 2000 and 2013 were analyzed. RESULTS: A total of 4,727 patients with a diagnosis of anorexia nervosa representing 16,592 admissions were included. Eighteen percent experienced at least one involuntary measure. A variety of measures were used with tube feeding being the most frequent followed by mechanical restraint, involuntary medication, physical restraint, constant observation, and sedative medication. A subsample of 2% of AN patients had more than 100 involuntary measures recorded. The first recorded involuntary measure was predicted by most but not all psychiatric comorbidities, especially schizophrenia, autism spectrum, and personality disorders, older age at first diagnosis, and previous admissions. DISCUSSION: It is important to develop a more granular understanding of patients at risk of requiring involuntary treatment and to determine how best to treat them effectively with minimal use of involuntary measures.

[3-year course after successful therapy of extreme anorexia nervosa]. / Dreijahresverlauf nach erfolgreicher Therapie schwerstgradiger Anorexia nervosa.

Anorexia nervosa is a common psychiatric disorder in adolescents and young adults and is often associated with high rates of comorbidities and a chronic course of the disease. Additionally, it still shows the highest rates of mortality among all psychiatric disorders. The case presented describes a female patient with severe and enduring anorexia nervosa who achieved remission after strict adherence to inpatient treatment and showed a full recovery in the 3­year follow-up. Shortly after achieving a minimum weight of 25 kg (171 cm, body mass index 8.5 kg/m2) the 21-year-old, chronically ill patient was admitted to an intensive care unit. After a phase of stabilization and achieving a BMI of 10 kg/m2, she was transferred to a hospital specialized in treating eating disorders. It came to a full recovery of the patient including full weight restoration during regular follow-ups (BMI 20.0 kg/m2) and normalization of the psychopathology of the eating disorder. In a 3-year follow-up, the patient presented with an enduring and complete remission of all symptoms, which were extremely expressed during the illness.

Severe and enduring anorexia nervosa (SEED-AN): a qualitative study of patients with 20+ years of anorexia nervosa.

Little is known about how patients with long-term eating disorders manage their clinical problems. We carried out a preliminary qualitative study (using Thematic Analysis) of patients with severe and enduring anorexia nervosa (SEED-AN) in which we undertook recorded interviews in eight participants whose conditions had lasted 20-40 years. We found 15 principle features in physical, psychological, social, family, occupational and treatment realms. Psychological and social realms were most affected. Severe physical problems were reported. They described feelings of unworthiness, frugality regarding money and obsessive time-keeping. Persisting with negligible social networks, participants described depression and hopelessness, while somehow achieving a sense of pride at their endurance and survival in spite of the eating disorder. They emphasized the importance of professional help in managing their care. The severe and enduring description, often reserved for people with psychotic illness, is appropriately applied to SEED-AN, which has major impacts in all realms.

Harm reduction in severe and long-standing Anorexia Nervosa: part of the journey but not the destination-a narrative review with lived experience.

Questions remain about the best approaches to treatment for the subset of patients with severe and long-standing Anorexia Nervosa, commonly described in the literature as "Severe and Enduring Anorexia Nervosa." When discussing the optimal strategies and goals for treating this group, there is uncertainty over whether to focus on refining current treatment methods or exploring alternative approaches. One such alternative is "harm reduction," which has generated a wave of positive interest from patients and clinicians alike because of its emphasis on individual autonomy, personal goals and quality of life. While harm reduction can provide an attractive alternative to seemingly endless cycles of ineffective treatment, this narrative review builds on previous work to highlight the inadequate terminology and possible dangers of considering harm reduction as the endpoint of treatment. In conjunction with perspectives from a lived experience author, we consider wider contextual and ethical issues in the field of eating disorders, which should inform the role of harm-reduction approaches in this patient group.

One model of treatment for patients with severe and long-standing Anorexia Nervosa is termed "harm reduction", which moves away from traditional treatment aimed at full recovery and weight gain. This approach instead prioritises quality of life, giving patients greater control over their care. Harm reduction remains ethically controversial due to concerns about unaddressed malnutrition and issues of consent for this subset of patients. This review examines the inadequacies in how severe and long-standing Anorexia is defined, alongside exploring the ethical concerns of harm reduction with lived experience from one author.

Clinical and scientific review of severe and enduring anorexia nervosa in intensive care settings: introducing an innovative treatment paradigm.

BACKGROUND: Anorexia nervosa is a serious and potentially lethal psychiatric disorder. Furthermore, there is significant evidence that some individuals develop a very long-standing form of the illness that requires a variety of different treatment interventions over time. OBJECTIVE: The primary goal of this paper was to provide a review of treatment strategies for severe and enduring anorexia nervosa (SE-AN) with the particular focus on treatments involving hospital care. Additionally, we wish to highlight a contemporary approach to such care and provide qualitative reactions to this model from both staff and patients. METHODS: A selective and strategic review of the treatment literature for SE-AN was conducted for the current paper. Emphasis was placed on clinical or scientific papers related to hospital-based care. Additionally, staff who work on a specific inpatient eating disorder unit with a substantial treatment program for SE-AN, along with a number of SE-AN patients were surveyed regarding their experiences working on, or receiving treatment on the unit. Importantly, the staff of this unit created a specific treatment protocol for individuals receiving hospital care. The results of the highlight both advantages and challenges of a hospital-based protocol oriented toward emphasizing quality of life, medical stability, and a health-promoting meal plan. DISCUSSION: While there is general inconsistency with the type of treatment that is best suited to individuals with SE-AN, this is particularly true for higher levels of care that rely on inpatient hospital units or residential treatment settings. This is a highly significant clinical topic in need of further clinical and scientific examination.

Anorexia nervosa is a serious illness which often persists for decades. Treatments for persistent anorexia nervosa are not well defined and there is considerable debate in the field about appropriate types of treatment strategies for these individuals. Such clinical uncertainty is particularly noteworthy in terms of the most appropriate types of care for these patients when they are hospitalized, which happens relatively frequently. Greater efforts are needed to develop inpatient programs for SE-AN that take into consideration their unique clinical needs.

Improvement in depressive symptoms in a patient with severe and enduring anorexia nervosa and comorbid major depressive disorder using psychotherapy-assisted IV ketamine : a case report.

BACKGROUND: Anorexia nervosa is a life-threatening psychiatric illness with a high mortality rate and limited treatment options. This illness is frequently comorbid with major depressive disorder, leading to additional obstacles in patient quality of life, and increasing the mortality rate further due to risk of suicide. Ketamine, a competitive N-methyl-D-aspartate receptor antagonist, has been shown to be beneficial in depression given its effects on neuroplasticity. There are few cases in the literature describing ketamine use in patients with eating disorders, and even fewer that describe psychotherapy-assisted ketamine use in this patient population. We present the case of a 33-year-old woman with a history of severe and enduring anorexia nervosa and comorbid major depressive disorder who we treated safely with ketamine-assisted psychotherapy using intravenous ketamine in a general hospital setting. CASE PRESENTATION: Our patient is a 33-year-old woman with past psychiatric history of severe and enduring anorexia nervosa and major depressive disorder with comorbid psychiatric and medical conditions who presented to the hospital due to malnutrition. She had an extensive psychiatric history as well as multiple medical hospitalizations due to her eating disorder. She had tried numerous psychiatric treatments, including antidepressants, mood stabilizers, antipsychotics, electroconvulsive therapy, and multiple types of therapies without significant improvement in symptoms. She agreed to try ketamine for treatment-resistant depression and received it intravenously for seven sessions in a closely monitored setting, and simultaneously engaged in acceptance and commitment therapy during sessions. She demonstrated increased cognitive flexibility, disappearance of suicidal ideation, and reduction in Beck Depression Inventory Scores. CONCLUSIONS: Our case is unique in that it demonstrates the successful usage of ketamine-assisted psychotherapy in a hospital setting with severe and enduring anorexia nervosa and comorbid major depressive disorder. Her body mass index was profoundly low at 13, whereas the lowest documented in the literature was 16.9. This case shows that ketamine-assisted psychotherapy may be a promising treatment modality for patients with anorexia nervosa with co-morbid depression who have failed other interventions.

Towards collaborative care for severe and enduring Anorexia Nervosa - a mixed-method approach.

BACKGROUND: Severe and Enduring Eating Disorders (SEED), in particular SEED-Anorexia Nervosa (SE-AN), may represent the most difficult disorder to treat in psychiatry. Furthermore, the lack of empirical research in this patient group, and, consequently the lack of guidelines, call for an urgent increase in research and discussion within this field. Meanwhile experts concur that effective care should be structured in a collaborative manner. OBJECTIVE: To identify the challenges in providing care to patients with SE-AN in the Dutch healthcare context, and propose a collaborative care treatment model to address these issues. METHODS: A pragmatic mixed-method approach was used, structured as follows: (1) Identifying perceived barriers and treatment needs from the viewpoint of both patients and eating disorder healthcare professionals through an evaluation questionnaire; (2) Investigating current treatment practices for SEED/SE-AN via benchmarking; (3) Gaining insight into the optimal structure and content of care by interviewing network partners and experts-by-experience. Based on these findings, and drawing from literature on severe and enduring disorders, a treatment model for SE-AN was proposed and implemented. RESULTS: The key challenges identified included a lack of knowledge about eating disorders among network partners, treatment ambivalence among patients and poor collaboration between professionals. The proposed model enhances self-management and collaborative relationships with healthcare providers, offers user-friendly and practical guidance, and aims at stabilization, reducing relapses, deterioration, and readmissions, thereby being cost-effective. Importantly, the model operates across levels of care (primary, secondary, tertiary). CONCLUSION: This study, describing a collaborative care program for SE-AN, developed and implemented in a highly specialized treatment center for eating disorders, sets the stage for further explanatory/efficacy research to build on the findings in this study, with the following aims: addressing the critical gap in care for SEED/SE-AN, improving better healthcare organization, reducing relapse rates, and lowering costs for this often overlooked patient group.

Severe and Enduring Eating Disorders (SEED), and particularly Severe and Enduring Anorexia Nervosa (SE-AN), present significant challenges in psychiatric treatment. This study aimed to understand the obstacles in caring for patients with SEED/SE-AN in the Dutch healthcare system and proposed a collaborative care model to address the issues. Through surveys, interviews, and benchmarking, key challenges were identified, including limited knowledge about eating disorders, patient ambivalence, and poor professional collaboration. The collaborative care model for SE-AN that was proposed in this study emphasizes structured care coordination, education for network partners, and support for eating disorder professionals, combining clinical management and psychotherapy. The study aims to bridge the gap in care for SE-AN and improve healthcare organization for this overlooked patient group.

Comparing hospitalized adult patients with chronic anorexia nervosa with versus without prior hospitalizations.

BACKGROUND: Anorexia nervosa (AN) is a severe psychiatric disorder, from which recovery is often protracted. The role of prior specialized inpatient treatment on subsequent treatment attempts for adults with chronic AN and predictors of treatment response for severe and enduring AN (SE-AN) are needed to improve outcomes. METHOD: Participants (N = 135) with chronic AN (ill ≥7 years) admitted to an integrated inpatient-partial hospitalization eating disorders (ED) unit with prior ED hospitalization(s) (+ PH; n = 100) were compared to those without prior ED hospitalizations (-PH; n = 35) on admission characteristics (BMI, length of illness, outpatient ED treatment history, symptomatology (ED, anxiety, and depressive), history of suicide attempts or non-suicidal self-injury (NSSI)), treatment motivation and recovery self-efficacy, and discharge outcomes (discharge BMI, rate of weight gain, length of stay, clinical improvement). RESULTS: Groups were similar with regard to age, years ill, and admission BMI. The + PH group had lower desired weight, lifetime nadir BMI and self-efficacy for normative eating, and higher state and trait anxiety than the -PH group. +PH were also more likely to endorse history of NSSI and suicide attempt. Regarding discharge outcomes, most patients achieved weight restoration at program discharge (mean discharge BMI = 19.8 kg/m2). Groups did not differ on rate of weight gain, likelihood of attending partial hospital, partial hospital length of stay, program discharge BMI, or likelihood of clinical improvement (p's > 0.05) although inpatient length of stay was longer for the + PH group. CONCLUSIONS: Participants with chronic AN + PH exhibited more severe psychiatric comorbidity and lower self-efficacy for normative eating than AN -PH, however short-term discharge outcomes were similar. Future research should determine whether weight restoration and targeting comorbidities impacts relapse risk or need for rehospitalization among chronic and severe + PH. Despite similar illness durations, those with chronic AN -PH may be able to transition to partial hospital earlier. Conversely there is risk of undertreatment of chronic AN + PH given the recent shift promoting briefer self-directed admissions for adults with SE-AN. Research comparing + PH and -PH adults with chronic AN may facilitate efforts to individualize care and characterize relapse risk following intensive treatment.

Some individuals with longstanding anorexia nervosa (AN) remain ill despite multiple attempts at intensive treatment. Others reach a high level of specialty care (e.g. inpatient or residential) for the first time only late in their illness. This study compared 100 hospitalized patients with chronic AN (ill ≥ 7 years) who previously received specialty inpatient eating disorder care to 35 hospitalized patients with chronic AN and no prior intensive treatment. Participants completed questionnaires at admission and weight change and hospital course were assessed at program discharge by chart review. At admission, individuals with prior hospitalizations reported greater difficulties with anxiety and suicidal behavior, lower confidence for changing their eating habits, and lower desired body weight compared to those with no prior inpatient treatment. Both groups had similar weight change and clinical improvement during treatment with mean discharge BMI consistent with weight restoration. These outcomes suggest equivalent short term improvement and weight restoration for individuals with chronic AN regardless of whether they previously received inpatient treatment and call into question whether the recent shift to brief admissions for those with chronic and severe AN may result for some in undertreatment, given that weight restoration remains the strongest predictor of long-term recovery.

Navigating the ethical complexities of severe and enduring (longstanding) eating disorders: tools for critically reflective practice and collaborative decision-making.

Decisions about the treatment of eating disorders do not occur in a socio-political vacuum. They are shaped by power relations that produce categories of risk and determine who is worthy of care. This impacts who gets access to care and recognition of rights in mental health services. Globally, there are calls for more human rights-based approaches in mental health services to reduce coercion, improve collaborative decision making and enhance community care. Treating individuals with longstanding, Severe and Enduring Eating Disorders (SEED) or Severe and Enduring Anorexia Nervosa (SE-AN) can be particularly problematic when it involves highly controversial issues such as treatment withdrawal and end-of-life decisions and, where legally permissible, medically assisted dying. In this article, we argue that the socio-political context in which clinical decision making occurs must be accounted for in these ethical considerations. This encompasses considerations of how power and resources are distributed, who controls these decisions, who benefits and who is harmed by these decisions, who is excluded from services, and who is marginalised in decision making processes. The article also presents tools for critically reflective practice and collaborative decision-making that can support clinicians in considering power factors in their practice and assisting individuals with longstanding eating disorders, SEED and SE-AN to attain their rights in mental health services.

A novel outpatient treatment model for patients with severe and enduring anorexia nervosa: an observational study of patient characteristics, treatment goals, and treatment course.

BACKGROUND: Approximately 20-30% of people with anorexia nervosa develop an enduring form of the disorder. In the present study a newly developed outpatient treatment unit for patients with severe and enduring anorexia nervosa was described. The treatment model is flexible, patient-centered, and aims at enhancing quality of life, maintaining medical stability, and minimizing harm. Treatment contents, patient characteristics, treatment goals, and course of treatment from the first five years of operation were described and analyzed. METHODS: The participants (N = 22) consisted of all referrals resulting in an assessment or treatment period at the unit between May 2017 and May 2022. All participants were women. The study was a registry study. Information regarding patient characteristics, treatment goals, and the course of treatment was gathered from medical records. RESULTS: On average, the participants had had a diagnosed eating disorder for 12.80 years, and self-reported eating disorder symptoms for 19 years. Their symptomatology included severe eating disorder symptoms, psychiatric comorbidities, extreme underweight, and co-occurring medical conditions. Their treatment goals commonly concerned improving physical health, reducing eating disorder symptoms, improving psychological well-being, and improving quality of life. The majority of participants for whom this information was available benefited from the treatment (60%) and their treatment goals were met or partly met (66.6%), as measured by evaluations made by the patient or the treatment team. More than two thirds (69.2%) of the participants for whom this information was available remained weight stable or showed an increase in BMI. CONCLUSIONS: This observational study suggests that many individuals with severe and enduring anorexia nervosa may benefit from flexible treatment, aiming at supporting quality of life. The results highlight the importance of coordinating and integrating the treatment of severe and enduring anorexia nervosa and co-occurring psychiatric disorders as well as medical complications. Further research and international dialogue about the how treatment for this vulnerable patient group should best be organized is called for. Trial registration Trial registration number: NCT05708404. Date of registration: 01/23/2023 (retrospectively registered).

Approximately 20­30% of individuals with the eating disorder anorexia nervosa develop an enduring form of the illness. In this study a newly developed treatment unit for patients with severe and enduring anorexia nervosa was described. The treatment is flexible and aims at enhancing quality of life. Patient characteristics, treatment goals, and course of treatment from the first five years of operation were analyzed. The participants were patients treated at the new treatment unit. All participants were women. The study was based on patient records. On average, the participants had had a diagnosed eating disorder for more than 12 years, and self-reported eating disorder symptoms for 19 years. Many participants had severe eating disorder symptoms, other psychiatric illnesses, extreme underweight, and other medical conditions. Their own treatment goals concerned improving physical health, reducing eating disorder symptoms, improving psychological well-being, and improving quality of life. Many participants benefited from the treatment. This study shows that individuals with severe and enduring anorexia can benefit from flexible treatment that supports quality of life.

First, do no harm: the proposed definition of "terminal anorexia" is fraught with danger for vulnerable individuals.

A recent article in the Journal of Eating Disorders (10:23, 2022) proposed criteria for "terminal anorexia" with a cited goal of improving access to end-of-life care (Gaudiani et al. in J Eat Disord 10(1):23, 2022). The authors presented three cases in which patients received end-of-life care, including the prescription of medical assistance in dying (MAID), also known as physician-assisted suicide (PAS). The proposed criteria lack the evidence base for adoption and do not acknowledge the compelling evidence that exists surrounding possible prolonged timelines to recovery for some individuals and the nuances of assessing capacity in this population.

Terminal anorexia nervosa: three cases and proposed clinical characteristics.

BACKGROUND: Most individuals with eating disorders will either recover, settle into an unrecovered but self-defined acceptable quality of life, or continue to cycle from crisis to relative stability over time. However, a minority of those with severe and enduring eating disorders recognize after years of trying that recovery remains elusive, and further treatment seems both futile and harmful. No level of harm reduction proves achievable or adequately ameliorates their suffering. In this subgroup, many of those with anorexia nervosa will experience the medical consequences of malnutrition as their future cause of death. Whereas anyone who wishes to keep striving for recovery despite exhaustion and depletion should wholeheartedly be supported in doing so, some patients simply cannot continue to fight. They recognize that death from anorexia nervosa, while perhaps not welcome, will be inevitable. Unfortunately, these patients and their carers often receive minimal support from eating disorders health professionals who are conflicted about terminal care, and who are hampered and limited by the paucity of literature on end-of-life care for those with anorexia nervosa. CASE PRESENTATION: Three case studies elucidate this condition. One patient was so passionate about this topic that she asked to be a posthumous co-author of this paper. CONCLUSIONS: Consistent with literature on managing terminal illness, this article proposes clinical characteristics of patients who may be considered to have a terminal eating disorder: diagnosis of anorexia nervosa, older age (e.g. age over 30), previous participation in high quality care, and clear and consistent determination by a patient who possesses decision-making capacity that additional treatment would be futile, knowing their actions will result in death. By proposing the clinical characteristics of terminal anorexia nervosa, we hope to educate, inspire compassion, and help providers properly assess these patients and provide appropriate care. We hope that this proposal stimulates further expert consensus definitions and clinical guidelines for management of this population. In our view, these patients deserve the same attendant care and rights as all other patients with terminal illness, up to and including medical aid in dying in jurisdictions where such care is legal.

Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined.

A recent article (JED 10:23, 2022) proposed defining terminal anorexia to improve access to palliative and hospice care, and to medical aid in dying for a minority of patients with severe and enduring anorexia nervosa (SE-AN). The authors presented three cases and, for two, the first author participated in their death. Anorexia nervosa is a treatable psychiatric condition for which recovery may be uncertain. We are greatly concerned however regarding implications of applying the label "terminal" to anorexia nervosa and the risk it will lead to unjustified deaths in individuals whose mental illness impairs their capacity to make a reasoned treatment decision.

Discharge Body Mass Index, Not Illness Chronicity, Predicts 6-Month Weight Outcome in Patients Hospitalized With Anorexia Nervosa.

Proposed treatments for severe and enduring anorexia nervosa (SE-AN) focus on quality of life, and psychological and social functioning. By de-emphasizing weight restoration as a priority, however, premature diagnosis of SE-AN may reduce potential for recovery. The present study assessed the effect of weight restoration, illness duration, and severity on treatment outcome 6 months after discharge from an intensive, meal-based behavioral treatment program. Participants included hospitalized adult women (N = 191) with AN or underweight other specified feeding and eating disorder (OSFED). Participants were characterized as short-term (ill <7 years; n = 74) or long-term ill (ill ≥ 7 years; n = 117). Compared with short-term ill, long-term ill patients were older, had lower lifetime body mass index (BMI), more prior admissions, and exhibited greater depression and neuroticism. Long-term vs. short-term ill patients gained weight at the same rate (~2 kg/wk) and were equally likely to be weight restored by discharge (>75% reached BMI ≥ 19 kg/m2 in both groups). At 6-month follow-up (n = 99), both groups had equivalent self-reported BMI, and depression, drive for thinness, body dissatisfaction, and bulimia scores. The only predictor of BMI ≥ 19 kg/m2 at follow-up was discharge BMI. The likelihood of a BMI ≥ 19 kg/m2 at follow-up was 5-fold higher for those with discharge BMI ≥ 19 kg/m2. Few studies of long-term ill inpatients with AN have examined the impact of full weight restoration on short-term outcomes. This study supports the therapeutically optimistic stance that, regardless of illness duration, hospitalized patients with AN benefit from gaining weight to a BMI ≥ 19 kg/m2.