Scoping review of end-of-life care for persons with anorexia nervosa.

BACKGROUND: End-of-life (EOL) care is the part of palliative care intended for persons nearing death. In anorexia nervosa (AN), providing EOL care instead of coercing life-sustaining measures is controversial. The existing literature has not been synthesized yet. To clearly delineate differing views and identify open questions as well as areas of possible consensus, we conducted the first-ever synthesis of the existing literature. METHODS: We searched EMBASE, PubMed, PsycInfo, and Web of Science for scientific publications on forgoing coerced life-sustaining measures and/or providing EOL care for persons with AN who refuse life-sustaining measures, typically artificial nutrition. Palliative care outside of the EOL context and medical assistance in dying were not reviewed. As very little quantitative studies were identified, we qualitatively analyzed conceptual questions, ethical reasoning, legal aspects, stakeholder attitudes, practical aspects, stakeholder needs, and outcome. RESULTS: We identified 117 eligible publications from 1984 to 2023, mainly case reports (n=26 different cases) and ethical analyses. Conceptualizations of key terms such as terminality, futility, and decision-making capacity (DMC) in AN varied widely and were often value-laden and circular. Ethical reasoning centered on weighing the preservation of life versus quality of life in the context of uncertainty about DMC and likelihood of clinical remission. Studies on stakeholder attitudes reflected this challenge. In some cases, courts ruled against coerced life-sustaining measures and/or in favor of EOL care for persons with AN. While eligibility criteria were contested, recommendations for deliberating about and providing EOL care were consistent. We identified only one study on stakeholder needs and none on outcome. Case reports described quality of life under EOL care as good and death as the most frequent outcome but engagement in voluntary treatment and (partial) clinical remission in some. CONCLUSIONS: The debate around EOL care in AN needs consented, coherent terminology whose value base is reduced to a minimum and made transparent. While more empirical research into decision-making in AN and predictors of outcome might help reduce uncertainty, fundamental normative questions need to be addressed, for example regarding the ethico-legal significance of treatment refusals, the weighing of quantity versus quality of life and the appropriateness of diagnosis-based ethico-legal exceptionalism such as hard paternalism. More research is needed on outcome of and stakeholder needs in EOL care for persons with AN.

How Palliation Can Improve Care of Patients With Severe and Enduring Anorexia Nervosa.

Palliative care refers to clinical interventions whose purpose is relief of suffering, not treatment of a patient's underlying illness. Palliation is widely used in the care of patients with serious physical illnesses, but its use in caring for patients with severe, persistent mental illnesses is controversial. This commentary on a case summarizes emerging themes in palliative psychiatry and explores its ethical feasibility in the care of patients with severe and enduring anorexia nervosa.

A Life-Affirming Palliative Care Model for Severe and Enduring Anorexia Nervosa.

Some individuals with severe and enduring anorexia nervosa experience dramatically degraded quality of life in the face of refractory illness and compulsory treatment. We propose a palliative care (PC) model for this group of patients that aims to support their unique goals of care, improve social-professional function, reduce physical suffering, and honor the whole person. Far from representing a pre-hospice model, a PC model for those with severe and enduring anorexia nervosa instead provides an alternative to current practices in hopes of meaningfully improving quality of life and outcomes.

An exploration of the association between premorbid weight status on patient and caregiver factors at pre and post-treatment among youth with anorexia nervosa/atypical anorexia nervosa.

Patients with atypical anorexia nervosa (AAN) or anorexia nervosa (AN) with premorbid history of higher weight (PHW; median BMI ≥ 85th %ile) may report greater eating disorder (ED) pathology, anxiety, and depression, than patients with premorbid history of lower weight (PLW; mBMI <85th %ile). Less is known about caregiver attitudes or treatment outcome related to premorbid weight history. The current study examined associations between premorbid weight history and patient/caregiver factors at presentation, during treatment, and end of treatment among adolescents (N = 138) diagnosed with AN/AAN and their caregivers who received interdisciplinary ED treatment. The sample comprised adolescents with PHW (n = 58, 40.6 %) or PLW (n = 82, 59.4 %). Adolescents with PHW did not differ with regard to patient- or caregiver-reported ED symptoms, comorbid psychopathology, rates of treatment completion, and attainment of estimated body weight compared to PLW (ps > .05). Adolescents with PHW (vs. PLW) were more likely to be diagnosed with AAN (67.9 %, p < .001), identify as cisgender male (p < .001) and to have lost more weight prior to presentation (p < .001). Perceived caregiver burden was lower among adolescents with PHW vs. PLW (p < .001). Further research should expand on this preliminary study exploring associations between premorbid weight history on patient and caregiver factors at treatment presentation and conclusion to enhance the efficacy of evidence-based treatment across the weight-spectrum.

Current approaches in the recognition and management of eating disorders.

Eating disorders are now well acknowledged mental health problems that are common and present in people from diverse sociodemographic backgrounds. The past decade has seen a rapid expansion in research into eating disorder interventions. In response to the increasing burden of eating disorders, the Australian Government Department of Health and Aged Care has implemented significant policy changes to improve patient access to Medicare and inpatient treatment facilities. There are several international clinical practice guidelines and a robust evidence base particularly for first line care with specific psychological therapies, including guidelines for the management of eating disorders in individuals with a high weight. Medications play an important adjunct role in care, and novel neuromodulating treatments, such as psychostimulants, are under study. There is emerging evidence for increased person-centred care, with more choice in the form of alternatives to hospital inpatient programs and more respectful consideration of care for all who experience an eating disorder, including people with high weight.

Terminal anorexia nervosa cannot currently be identified.

OBJECTIVE: To review the recent literature on the proposed entity of "terminal anorexia nervosa." METHOD: Review of recent literature on the concept of "terminal AN" as well as past and supporting work. RESULTS: The cases and proposed definitions are reviewed, as is the growing literature on this topic. Problems exist with predicting outcomes and thus, determining futility, as well as about capacity for decision-making. DISCUSSION: To make decisions about treatment futility, the existing database for predicting AN course and treatment response must expand greatly. In addition, while decisional capacity is central to the debate, its determination may be unusually complex in this situation. The gaps identified point to extensive needs for future research, but they also indicate that the concept of "terminal AN" cannot be defined at present and should not be used. PUBLIC SIGNIFICANCE: Anorexia nervosa is challenging to treat, and it often lasts for years. There is debate about whether palliative care or medical aid in dying should be considered. Identifying who has a terminal case of AN is important for this question, but we have limited ability to predict a given individual's outcome at present, and there are concerns about the ability of those with AN to make treatment decisions. This means the concept of "terminal AN" should not currently be used.

Efficacy of deep brain stimulation for the treatment of anorexia nervosa: a systematic review and network meta-analysis of patient-level data.

OBJECTIVE: Deep brain stimulation (DBS) has been approved as a therapy for movement disorders and obsessive-compulsive disorder. Recently, DBS has been studied in patients with anorexia nervosa (AN), which is a debilitating and life-threatening psychiatric disorder. Several stimulation locations have been tested without a clear indication of the best region. In this systematic review and network meta-analysis, the authors used patient-level data to identify stimulation targets with the greatest evidence for efficacy in increasing body mass index (BMI). METHODS: A systematic search was performed on or before August 4, 2022, using PubMed/MEDLINE, Ovid, and Scopus. Articles were included if patient-level data were presented, patients were diagnosed with AN and treated with DBS, and 6 months or more of postoperative follow-up data were reported. Quality and risk of bias were assessed with the NIH assessment tools. Patient data were collected and stratified by stimulation location. A network meta-analysis was performed. This review was written in accordance with PRISMA guidelines for systematic reviews. RESULTS: Eleven studies consisting of 36 patients were included. The mean age and BMI at the time of surgery were 38.07 (SD 11.64) years and 12.58 (SD 1.4) kg/m2, respectively. After 6 months of DBS, a significant difference in percentage change in BMI was found between the nucleus accumbens and subcallosal cingulate cortex (SCC) (SMD 0.78; 95% CI 0.10, 1.45) and between the SCC and ventral anterior limb of the internal capsule (SMD -1.51; 95% CI -2.39, -0.62). Similarly, at 9-12 months, a significant difference in percentage change in BMI was found between the SCC and ventral anterior limb of the internal capsule (SMD -1.18; 95% CI -2.21, -0.15). With hierarchical ranking, this study identified SCC as the most supported stimulation location for BMI change at 6 and 9-12 months (P-scores 0.9449 and 0.9771, respectively). CONCLUSIONS: Several DBS targets have been tested for AN, and this study identified the SCC as the most supported region for BMI change. However, further studies with blinded on/off periods are necessary to confirm this finding.

Cardiopulmonary exercise testing for patients with anorexia nervosa: a case-control study.

PURPOSE: Patients with anorexia nervosa (AN) require appropriate nutrient therapy and physical activity management. Eating disorder treatment guidelines do not include safe, evidence-based intensity criteria for exercise. This study used cardiopulmonary exercise testing (CPX) to evaluate the exercise tolerance of patients with AN. METHODS: CPX was performed with 14 female patients with AN admitted to a specialized eating disorder unit between 2015 and 2019. Their anaerobic threshold (AT) was determined by assessing their exercise tolerance using CPX and compared with 14 healthy controls (HC). The metabolic equivalents (AT-METS) were compared when AT was reached. We examined factors related to AT (AN-AT) in the AN group, including age, body mass index (BMI), previous lowest weight, minimum BMI, past duration of BMI < 15, exercise history, and ΔHR (heart rate at the AT-resting heart rate). RESULTS: The AT of the AN group (BMI: 15.7 [Mean] ± 1.8 standard deviation [SD]) was significantly lower than that of the HC group (BMI: 19.7 ± 1.8) (AN: 10.0 ± 1.8 vs. HC: 15.2 ± 3.0 ml/kg/min, P < 0.001). AT-METS was also significantly lower in the AN group than in the HC group (AN: 2.9 ± 0.52 vs. HC: 4.4 ± 0.91, P < 0.001). AN-AT was highly influenced by ΔHR. CONCLUSIONS: This study showed that AT and AT-METS were lower in patients with AN than in HC. Patients with AN should be prescribed light-intensity aerobic exercise, and the current findings may help develop future physical management guidelines for patients with AN. LEVEL OF EVIDENCE: III: Evidence obtained from case-control analytic studies.

When refeeding is not enough: severe and prolonged pancytopenia in an adolescent with anorexia nervosa.

A 15-year-old female patient with anorexia nervosa presented an unusually prolonged and severe episode of pancytopenia with severe thrombopenia and severe leucopenia. Despite effective refeeding, active specialized interventions were necessary. Upon admission, the patient presented with severe and symptomatic thrombopenia, severe neutropenia and gelatinous marrow transformation. In addition to refeeding, active interventions such as platelet transfusion and granulocyte-colony stimulating factor were successful to manage the patient's complications. The etiological search for pancytopenia was negative. The patient's prolonged starvation was probably a key factor. Medical history, clinical presentation, evolution, and biological data including bone marrow aspiration results are presented. Management of cytopenia and of their complications in a context of severe starvation is discussed in regard of existing literature. A simple monitoring attitude may prove insufficient in cases of severe pancytopenia in anorexia nervosa.Level of evidence V, descriptive study.

Cognitive and quality-of-life related factors of body mass index (BMI) improvement after deep brain stimulation in the subcallosal cingulate and nucleus accumbens in treatment-refractory chronic anorexia nervosa.

BACKGROUND: Up to 20% of the cases of anorexia nervosa (AN) are chronic and treatment-resistant. Recently, the efficacy of deep brain stimulation (DBS) for severe cases of AN has been explored, with studies showing an improvement in body mass index and other psychiatric outcomes. While the effects of DBS on cognitive domains have been studied in patients with other neurological and psychiatric conditions so far, no evidence has been gathered in AN. METHODS: Eight patients with severe, chronic, treatment-resistant AN received DBS either to the nucleus accumbens (NAcc) or subcallosal cingulate (SCC; four subjects on each target). A comprehensive battery of neuropsychological and clinical outcomes was used before and 6-month after surgery. FINDINGS: Although Body Mass Index (BMI) did not normalise, statistically significant improvements in BMI, quality of life, and performance on cognitive flexibility were observed after 6 months of DBS. Changes in BMI were related to a decrease in depressive symptoms and an improvement in memory functioning. INTERPRETATION: These findings, although preliminary, support the use of DBS in AN, pointing to its safety, even for cognitive functioning; improvements of cognitive flexibility are reported. DBS seems to exert changes on cognition and mood that accompany BMI increments. Further studies are needed better to determine the impact of DBS on cognitive functions.

Assessment of Long-Term Treatment Results in Women Suffering from Anorexia Nervosa in Adolescence.

INTRODUCTION: Reports assessing long-term treatment outcomes for anorexia nervosa (AN) are divergent and refer to different populations. They lack long-term observations in AN patients in Poland. AIM OF THE STUDY: Analysis of the recovery, relapse rate, and predictive factors in patients treated due to AN in adolescence. MATERIAL AND METHODS: A total of 201 subjects were given a survey. Ninety-seven women were recruited: 56 reported to the clinic and 41 filled in the survey. RESULTS: The average period from hospitalization to the survey was 7.76 ±4.39 years. Remission was found in 78.4%, 21.6% still pre-sented AN, and 84.2% required a one-off hospitalisation, 10.5% twice. The average BMI was: 20.08 ±3.24 kg/m 2 . The rate of attempted suicides was 6.2%. Predictive factors for poor outcome were as follows: older age of the patient when falling ill, lower SDS-BMI score at the onset of AN, transition from the restrictive type of AN into a binge-eating/purging type, and fail-ure to maintain contact with the mother. CONCLUSIONS: 1. Most girls suffering from the restricting type of AN in adolescence are cured permanently. 2. The severity of symptoms in these girls does not eliminate the chance of recovery and achieving important life goals, com-pleting education, finding a life partner, and having children. 3. Girls with a smaller degree of cachexia at onset of AN, with no binge-eating/purging symptoms, maintaining regular con-tact with their mothers, have a better prognosis for recovery. 4. Six per cent of women treated in their youth for AN face the risk of attempted suicide, which points to the need to monitor their mental state for many years.

NMR- and MS-Based Untargeted Metabolomic Study of Stool and Serum Samples from Patients with Anorexia Nervosa.

Anorexia nervosa (AN), a pathological restriction of food intake, leads to metabolic dysregulation. We conducted a metabolomics study to reveal changes caused by AN and the effect of hospital realimentation on metabolism. Both stool and serum from patients with AN and healthy controls were analyzed by NMR and MS. Statistical analysis revealed several altered biochemical and anthropometric parameters and 50 changed metabolites, including phospholipids, acylcarnitines, amino acids, derivatives of nicotinic acid, nucleotides, and energy metabolism intermediates. Biochemical and anthropometric parameters were correlated with metabolomic data. Metabolic changes in patients with AN described in our study imply serious system disruption defects, such as the development of inflammation and oxidative stress, changed free thyroxine (fT4) and thyroid-stimulating hormone (TSH) levels, a deficit of vitamins, muscle mass breakdown, and a decrease in ketone bodies as an important source of energy for the brain and heart. Furthermore, our data indicate only a very slight improvement after treatment. However, correlations of metabolomic results with body weight, interleukin 6, tumor necrosis factor α, fT4, and TSH might entail better prognoses and treatment effectiveness in patients with better system parameter status. Data sets are deposited in MassIVE: MSV000087713, DOI: 10.25345/C57R7X.

Severe and Enduring Anorexia Nervosa and Futility: A Time for Every Purpose?

The concept of futility in the treatment of individuals with severe and enduring anorexia nervosa remains controversial and has significant legal and ethical considerations. For those who have been unremittingly ill for 8 to 12 years, full recovery, although possible, is unlikely, and alternatives to traditional, active treatment must be explored. The harm reduction model, palliative care, and end-of-life care are explored as meaningful and reasonable treatments for this population. Landmark cases demonstrating the legal and ethical controversy of such treatment are explored.

Lessons learned developing and testing family-based interoceptive exposure for adolescents with low-weight eating disorders.

BACKGROUND: Anorexia nervosa (AN) usually develops in early adolescence and is characterized by high rates of morbidity and mortality. Family-based therapy (FBT) is the leading evidence-based treatment for adolescents with AN, but not all patients experience sufficient improvement. The purpose of this manuscript is to describe the development and subsequent experience with a Family-Based Interoceptive Exposure (FBT-IE) for adolescents with a broader form of low-weight eating disorders. METHODS: The novel IE-based behavioral intervention is a six-session family-based treatment module designed to directly target and modify disgust by altering the prefrontal regulation of the insula response to aversive stimuli by decreasing visceral sensitivity (e.g., bloating). Each session teaches a new skill regarding tolerating distress to visceral sensations associated with disgust and an in-vivo "IE exercise," in which the family is provided with a meal replacement shake of unknown content and caloric density. RESULTS: In this novel treatment, the patient learns to tolerate disgust in the context of a challenging food stimulus as a way to increase consumption of restricted foods outside of session. CONCLUSION: We discuss successes and challenges executing this treatment with patients with low-weight eating disorders and propose future directions for the intervention.

Evolución y tratamiento de los trastornos de la conducta alimentaria en adolescentes: serie de casos / Treatment of eating disorders in adolescents: case series

Los trastornos de la conducta alimentaria son enfermedades de elevada prevalencia en la adolescencia y tienen repercusión en la salud integral. El objetivo fue describir su evolución y tratamiento en un grupo de adolescentes. Se estudiaron adolescentes menores de 18 años con al menos 6 meses de seguimiento y tratados por un equipo interdisciplinario. Se incluyeron 41 adolescentes: 23 presentaron anorexia nerviosa; 9, trastornos alimentarios no especificados; 7, bulimia nerviosa y 2, trastorno por atracones. El 35 % de pacientes con anorexia nerviosa requirió internación por complicaciones de la desnutrición. El 69 % de las pacientes con anorexia nerviosa, el 57 % de quienes tenían bulimia nerviosa y el 78 % de quienes tenían un trastorno alimentario no especificado presentaron remisión total o parcial, y no hubo pacientes fallecidos. La mayoría presentó una evolución favorable con el tratamiento.

Eating disorders are highly prevalent diseases in adolescence and have an impact on overall health. The objective was to describe the evolution and treatment of eating disorders in adolescents. Adolescents under 18 years of age with at least 6 months of follow-up and treated by an interdisciplinary team were studied. Forty one adolescents were included, 23 presented anorexia nervosa, 9 unspecified eating disorders, 7 bulimia nervosa and 2 binge eating disorders. Thirty five percent of patients with anorexia nervosa required hospitalization for complications of malnutrition. Sixty nine percent of the patients with anorexia nervosa, 57 % with bulimia nervosa, and 78 % with unspecified eating disorders had total or partial remission and there were no deceased patients. The majority presented a favorable evolution with the treatment.

Reflexiones sobre la alianza terapéutica en adolescentes con anorexia nerviosa y sus familias / Reflections on the therapeutic alliance in adolescents with anorexia nervosa and their families

La alianza terapéutica en pacientes con Anorexia Nerviosa constituye un desafío debido a la gravedad de muchos de estos pacientes, a la falta de conciencia de enfermedad que poseen y a la resistencia al cambio, tanto del paciente como de sus familias. Frecuentemente, existe un desconocimiento por parte de los equipos médicos, de dicha patología y de su manejo. Diversos autores han aportado elementos necesarios para una adecuada alianza terapéutica y proponen estrategias que faciliten la construcción de esta alianza. En este artículo se lleva a cabo una revisión de las observaciones ofrecidas por varios autores, desde donde se reflexiona acerca de la importancia de la alianza terapéutica en pacientes con Anorexia Nerviosa y sus familias.

The therapeutic alliance in patients with Anorexia Nervosa constitutes a challenge due to several factors such as the severity of the illness that most of these patients suffer, their lack of awareness of disease, and the resistance to change in the patient and their family. Medical teams are frequently ignorant of this pathology and its treatment. Various authors have contributed in terms of the necessary elements for an adequate therapeutic alliance and in terms of delivering strategies to facilitate this alliance. In this article we will review several authors and reflect on the importance of the therapeutic alliance in patients with Anorexia Nervosa and their families.