ABSTRACT
Eating disorders (EDs) are complex, multifaceted conditions that significantly impact quality-of-life, often co-occur with multiple medical and psychiatric diagnoses, and are associated with a high risk of medical sequelae and mortality. Fortunately, many people recover even after decades of illness, although there are different conceptualisations of recovery and understandings of how recovery is experienced. Differences in these conceptualisations influence categorisations of ED experiences (e.g., longstanding vs. short-duration EDs), prognoses, recommended treatment pathways, and research into treatment outcomes. Within recent years, the proposal of a 'terminal' illness stage for a subset of individuals with anorexia nervosa and arguments for the prescription of end-of-life pathways for such individuals has ignited debate. Semantic choices are influential in ED care, and it is critical to consider how conceptualisations of illness and recovery and power dynamics influence outcomes and the ED 'staging' discourse. Conceptually, 'terminality' interrelates with understandings of recovery, efficacy of available treatments, iatrogenic harm, and complex co-occurring diagnoses, as well as the functions of an individual's eating disorder, and the personal and symbolic meanings an individual may hold regarding suffering, self-starvation, death, health and life. Our authorship represents a wide range of lived and living experiences of EDs, treatment, and recovery, ranging from longstanding and severe EDs that may meet descriptors of a 'terminal' ED to a variety of definitions of 'recovery'. Our experiences have given rise to a shared motivation to analyse how existing discourses of terminality and recovery, as found in existing research literature and policy, may shape the conceptualisations, beliefs, and actions of individuals with EDs and the healthcare systems that seek to serve them.
ABSTRACT
BACKGROUND: Recovery rates for people with eating disorders are low; fewer than half recover and approximately 20% develop a longstanding eating disorder. Patients with longstanding eating disorders are often referred to as "SEED" (severe and enduing eating disorders) although this remains controversial and is not acknowledged in the British treatment guidance. This project aimed to generate recommendations for a longstanding eating disorder care pathway by identifying what proportion of patients have longstanding eating disorders and how to best identify and support them. METHODS: Initially, a literature review was completed, followed by interviews with service-users who consider themselves to have longstanding eating disorders, and focus groups with staff members. The results were combined to create a definition of a longstanding eating disorder which was used to establish how many service-users could benefit from the pathway. The qualitative data was used to produce recommendations for a tailored pathway for those with longstanding eating disorders. RESULTS: The results highlighted that, although "SEED" is often used, participants preferred to be referred to as "longstanding" or having no label. Qualitative analysis identified four themes in relation to supporting this population group which described how to structure the service and individualise care, as well as patients' relationship to the service, and how to build a life after eating disorder services. CONCLUSIONS: Recommendations included promoting a hopeful message, focusing on quality of life and introducing peer support. Crucially, accessing the pathway should not result in being labelled "SEED", nor should it prevent access to recovery focused interventions including weight restoration. The full list of recommendations are included as well as the implications of the project and limitations.
It is known that as many as 20% of people with eating disorders do not recover, and go on to live with their eating disorder for a number of years. However, there is relatively little research or guidance for professionals about how to support this group of people. Therefore, this project aimed to design a pathway for patients with longstanding eating disorders by combining the research evidence, staff's expert opinion and patient's views. The results highlighted that the majority of participants in this sample expressed a dislike for the term 'SEED' (severe and enduring eating disorder) and preferred 'longstanding eating disorder' or having no label. The results were used to generate a set of recommendations about how services can best support this group of patients which covered how to structure the service, individualise care, manage patient's relationship to the service, and build a life after eating disorder services. Key ideas included the importance of remaining hopeful about future recovery, introducing peer support, and supporting patients to improve their quality of life.