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.

"Terminal anorexia nervosa" may not be terminal: An empirical evaluation.

Gaudiani et al. (2022) presented terminal anorexia nervosa (T-AN) as a potential new specifier to the anorexia nervosa (AN) diagnosis, with criteria including (a) AN diagnosis, (b) age > 30 years, (c) previously participated in high-quality care, and (d) the clear, consistent determination by a patient with decision-making capacity that additional treatment would be futile, knowing death will result. This study's purpose was to empirically examine a subgroup of participants with AN who met the first three criteria of T-AN-and a smaller subset who also met a proxy index of the fourth criterion involving death (TD-AN)-and compare them to an adult "not terminal" anorexia nervosa (NT-AN) group and to a "not terminal" subset 30 years of age or older (NTO-AN). Patients at U.S. eating disorder treatment facilities (N = 782; T-AN: n = 51, TD-AN: n = 16, NT-AN: n = 731, NTO-AN: n = 133), all of whom met criteria for a current Diagnostic and Statistical Manual of Mental Disorders, 5th Edition diagnosis of AN, were compared regarding admission, discharge, and changes from admission to discharge on physiological indices (i.e., white blood cell counts, albumin levels, aspartate aminotransferase levels, and body mass index), as well as self-report measures (i.e., eating disorder, depression, anxiety, and obsessive-compulsive symptoms). In contrast to the tight syndromal symptom interconnections of, and inevitable spiral toward death expected for, a terminal diagnosis, results suggest substantial variability within the T-AN group and TD-AN subset, and an overall trend of improvement across physiological and self-report measures. This study thus provides some empirical evidence against the specification of the T-AN diagnosis. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Extreme Risk Protection Orders: Legislative Intent and Clinician Guidance.

In this second column of a 2-part series exploring extreme risk protections orders, we utilize recent events in Colorado, including legislative efforts to expand the list of eligible petitioners to include clinicians, as an opportunity to explore questions and challenges faced by mental health and medical professionals serving in this capacity. Clinicians are in need of more clear guidance, given an emerging role that comes without clear evidence or practice standards to inform individualized clinical decision-making, and which potentially pits public safety interests against patient care needs, especially those pertaining to therapeutic relationships. In the interim, clinicians will best serve their patients by continuing to practice in a fashion that is analogous to decision-making around other interventions with serious implications for patient autonomy such as involuntary hospitalization. Ongoing collaboration with legislators is needed to arrive at laws that are informed by the limitations inherent in clinical risk assessment and that can be translated into clinical practices that simultaneously support patient needs and community safety.

Involuntary treatment: A qualitative study from the perspectives of individuals with anorexia nervosa.

OBJECTIVE: Involuntary treatment for anorexia nervosa (AN) is sometimes necessary and lifesaving but can be experienced negatively by some individuals. The purpose of this qualitative study was to better understand participants' perceptions about their experience with involuntary treatment for AN. METHOD: Thirty adult participants, who had been treated involuntarily for AN in the past, completed self-report measures and qualitative interviews. Interview transcripts were coded using thematic analysis. RESULTS: Three themes were identified: (1) mixed perceptions about involuntary treatment, (2) the impact of involuntary treatment on external factors, including relationships, education, and employment, and (3) lessons learned from the experience. Participants who endorsed a positive shift in perspective regarding the need for involuntary treatment also reported favorable changes in their eating disorder recovery, whereas individuals whose perspective about their involuntary treatment remained negative, showed no changes in their recovery post-treatment. CONCLUSIONS: Involuntary treatment for AN was recognized, in retrospect, as being beneficial by individuals with AN who were doing well, but individuals who continued to struggle with their eating disorder reported negative consequences.

Causes of death in patients with a history of severe anorexia nervosa.

OBJECTIVE: This study reports causes of death for a cohort of 35 patients with severe anorexia nervosa (AN), who were treated between 2012 and 2020, and descriptive information on their medical and psychological comorbidities is provided. METHODS: Three hundred and seventy patient names were submitted to the National Death Index (NDI). The NDI reviewed whether a death certificate matching each patient's identifying information existed, and if it existed, specific causes of death were noted. The original group of 370 patients consisted of 229 individuals who had been treated voluntarily and 141 who had been treated involuntarily. RESULTS: Thirty-five patients, from the 370 (9.4%) submitted to the NDI, with an initial diagnosis of AN, were confirmed deceased. Most (83%) were female with an average age of 38.5 years (SD:12.7) and average body mass index (BMI) of 12.8 kg/m2 (SD:2.4). The total number of patients, with AN listed as a cause of death, was 24 (69%). Two patients died as a result of suicide. Twenty-eight (80%) of the patients had a specific medical disease listed as a cause of death, with the most frequent being cardiovascular, metabolic, or gastrointestinal. CONCLUSIONS: AN is associated with a substantial risk of death from many medical causes. However, two (5.7%) of our sample died by suicide, a rate considerably lower than previously reported.

This is a study reporting on causes of death in a cohort of 35 patients with severe anorexia nervosa (AN), who were treated between 2012 and 2020. Three hundred and seventy patient names were submitted to the National Death Index (NDI). The NDI reviewed whether a death certificate matching each patient's identifying information existed, and if it existed, specific causes of death were noted. The original group of 370 patients consisted of 229 individuals who had been treated voluntarily and 141 who had been treated involuntarily. Thirty-five of the 370 patients (9.4%) submitted to the NDI were confirmed deceased. Eighty-three percent were female with an average age of 38.5 years (SD:12.7) and average body mass index (BMI) of 12.8 kg/m² (SD:2.4). The total number of patients with AN listed as a cause of death was 24 (69%). Twenty-eight (80%) of the patients had a specific medical disease listed as a cause of death, with the most frequent being cardiovascular, metabolic, or gastrointestinal. Two patients died as a result of suicide. We concluded that AN is associated with a substantial risk of death from many medical causes. However, two (5.7%) of our sample died by suicide, a rate considerably lower than previously reported.

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.

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.

Medical complications of bulimia nervosa.

Bulimia nervosa is a psychiatric disorder with many different medical sequelae. This article reviews the principal medical complications associated with bulimia nervosa, and emphasizes the importance of a timely approach to diagnosis and management.

Involuntary Treatment of Patients With Life-Threatening Anorexia Nervosa.

Anorexia nervosa has the highest mortality rate of any psychiatric illness. Predictors of mortality include chronicity of the illness, critically low body weight, and binging and purging behavior. Delusional beliefs body image, coupled with impaired judgment and cognition caused by starvation, often result in these patients adamantly resisting efforts to treat them. Guardianship, although useful in assisting with medical treatment decisions for patients with anorexia nervosa who are critically medically ill, is usually an inadequate intervention with respect to psychiatric treatment for these patients. Despite the severity and risk of the illness, there is often reluctance among providers to initiate involuntary treatment for patients with anorexia nervosa. Recent legal cases involving patients with anorexia nervosa have addressed the role of the committing court in authorizing treatment decisions and, in one case, opining that a patient was best served by receiving treatment in another state. Other related concerns addressed by the courts include ensuring that appropriate criteria are used for hospital admission, clarifying that the definition of grave disability as it pertains to anorexia does not require that the patient be close to death and that medications are often warranted in treating patients with the disease.

Caring for Patients With Severe and Enduring Eating Disorders (SEED): Certification, Harm Reduction, Palliative Care, and the Question of Futility.

Anorexia nervosa is a serious mental illness with a high mortality rate. The body image distortion inherent to this disorder and the impaired judgment and cognition due to malnutrition frequently result in patients refusing treatment. Treatment is most effective if patients are treated early in the course of their illness and undergo a full course of treatment. Involuntary treatment may therefore be both life-saving and critical to recovery. Between April 2012 and March 2016, 109 patients (5.2% of patients admitted to the Eating Recovery Center in Denver, CO) were certified, 39% of whom were transferred from the ACUTE Center for Eating Disorders at Denver Health Medical Center. Of these 109 certified patients, 31% successfully completed treatment, and 42% returned for a further episode of care; 24% of the certifications were terminated as involuntary treatment was not found to be helpful. Conclusions supported by these data are that patients with anorexia nervosa who are the most medically ill often require involuntary treatment. In addition, although many patients who are certified successfully complete treatment, involuntary treatment is not helpful approximately 25% of the time. Many of the patients for whom certification is ineffective are those who suffer from a lifetime of illness that is severe and enduring. Patients with severe and enduring eating disorders (SEED) typically undergo cyclical weight restoration and weight loss. Many of these patients question the value of serial treatments, especially when they have few (if any) illness-free intervals. Patients, families, and treating physicians often wish to explore other models of care, including harm reduction and palliative care. In addition, patients with SEED may also contemplate whether a compassionate death would be better than an ongoing lifetime of suffering. In this review, we outline arguments for and against the concept of futility in SEED, and explore whether (or when) patients are competent to make the decision to die.

Medical Complications of Anorexia Nervosa and Bulimia.

Anorexia nervosa and bulimia nervosa are serious psychiatric illnesses related to disordered eating and distorted body images. They both have significant medical complications associated with the weight loss and malnutrition of anorexia nervosa, as well as from the purging behaviors that characterize bulimia nervosa. No body system is spared from the adverse sequelae of these illnesses, especially as anorexia nervosa and bulimia nervosa become more severe and chronic. We review the medical complications that are associated with anorexia nervosa and bulimia nervosa, as well as the treatment for the complications. We also discuss the epidemiology and psychiatric comorbidities of these eating disorders.

Attention deficit hyperactivity disorder in men and women newly committed to prison: clinical characteristics, psychiatric comorbidity, and quality of life.

Attention deficit hyperactivity disorder (ADHD) is associated with comorbid psychiatric diagnoses and antisocial behaviors that contribute to criminality, yet studies of ADHD in offenders are few. The authors evaluate a random sample of 319 offenders using a version of the Mini International Neuropsychiatric Interview and Medical Outcome Survey Health Survey. ADHD was present in 68 subjects (21.3%). Offenders with ADHD were more likely to report problems with emotional and social functioning and to have higher suicide risk scores (p < .001). They also had higher rates of mood, anxiety, psychotic, and somatoform disorders. Antisocial and borderline personality disorders were also more common among offenders with ADHD. The authors conclude that ADHD is common in offenders and is associated with comorbid disorders, worse quality of life, and higher risk for suicidal behaviors. Its presence should alert prison staff that the offender is likely to require more intensive mental health services.

Long-term safety and efficacy of a unique fixed-dose combination gel of adapalene 0.1% and benzoyl peroxide 2.5% for the treatment of acne vulgaris.

BACKGROUND: A unique, once-daily, fixed-dose combination gel with adapalene 0.1% and benzoyl peroxide (BP) 2.5% has been developed for the treatment of acne vulgaris. OBJECTIVE: To evaluate the long-term (up to 12 months) safety and efficacy of the adapalene 0.1%/BP 2.5% fixed-dose combination gel for the treatment of acne vulgaris. METHODS: A total of 452 subjects were enrolled in this 12-month study and received adapalene/BP once daily. Evaluations included lesion count reduction, subject's assessment of acne, adverse events, and cutaneous tolerability. RESULTS: Adverse events were mild to moderate, occurred early in the study, and decreased thereafter. Discontinuations due to adverse events were low (2.0%) and no subjects discontinued due to lack of efficacy. Early and sustained reductions in inflammatory and noninflammatory lesions were observed, with clinically significant lesion reductions as early as week 1. CONCLUSIONS: These findings are consistent with previous clinical findings and support the use of a once-daily adapalene/BP fixed-dose combination as a safe and effective treatment in the long-term management of acne.

Targeting ASIC1a reduces innate fear and alters neuronal activity in the fear circuit.

BACKGROUND: The molecular mechanisms underlying innate fear are poorly understood. Previous studies indicated that the acid sensing ion channel ASIC1a influences fear behavior in conditioning paradigms. However, these differences may have resulted from an ASIC1a effect on learning, memory, or the expression of fear. METHODS: To test the hypothesis that ASIC1a influences the expression of fear or anxiety independent of classical conditioning, we examined the effects of disrupting the mouse ASIC1a gene on unconditioned fear in the open field test, unconditioned acoustic startle, and fear evoked by the predator odor trimethylthiazoline (TMT). In addition, we tested the effects of acutely inhibiting ASIC1a with PcTx, an ASIC1a antagonist in tarantula venom. Our immunohistochemistry suggested ASIC1a is expressed in the bed nucleus of the stria terminalis, medial amygdala, and periaqueductal gray, which are thought to play important roles in the generation and expression of innate fear. Therefore, we also tested whether ASIC1a disruption altered c-fos expression in these structures following TMT exposure. RESULTS: We found that the loss of ASIC1a reduced fear in the open field test, reduced acoustic startle, and inhibited the fear response to TMT. Similarly, intracerebroventricular administration of PcTx reduced TMT-evoked freezing in ASIC1a(+/+) mice but not ASIC1a(-/-) mice. In addition, loss of ASIC1a altered TMT-evoked c-fos expression in the medial amydala and dorsal periaqueductal gray. CONCLUSIONS: These findings suggest that ASIC1a modulates activity in the circuits underlying innate fear. Furthermore, the data indicate that targeting the ASIC1a gene or acutely inhibiting ASIC1a suppresses fear and anxiety independent of conditioning.