Discordant conceptualisations of eating disorder recovery and their influence on the construct of terminality

Rosiel Elwyn; Marissa Adams; Sam Sharpe; Scout Silverstein; Andrea LaMarre; James Downs; C Blair Burnette

doi:10.1186/s40337-024-01016-w

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Discordant conceptualisations of eating disorder recovery and their influence on the construct of terminality

Journal article

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Discordant conceptualisations of eating disorder recovery and their influence on the construct of terminality

Rosiel Elwyn, Marissa Adams, Sam Sharpe, Scout Silverstein, Andrea LaMarre, James Downs and C Blair Burnette

Journal of Eating Disorders, Vol.12, pp.1-16

2024

DOI: https://doi.org/10.1186/s40337-024-01016-w

PMCID: PMC11145809

PMID: 38831456

Appears in Thompson Institute Research Collection

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Abstract

Psychiatry (incl. psychotherapy)

Bioethics

People with disability

Longstanding eating disorder

Severe and enduring eating disorders

Iatrogenic harm

Futility

Terminality

Terminal anorexia nervosa

Outcome

Recovery

Lived experience

UniSC Diversity Area - Disability and Inclusion

Thompson Institute Special Collection

Eating disorders

Suicide prevention

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.

Details

Title: Discordant conceptualisations of eating disorder recovery and their influence on the construct of terminality
Authors: Rosiel Elwyn (Author) - University of the Sunshine Coast, Queensland, Thompson Institute
Marissa Adams (Author)
Sam Sharpe (Author)
Scout Silverstein (Author)
Andrea LaMarre (Author)
James Downs (Author)
C Blair Burnette (Corresponding Author) - Michigan State University
Publication details: Journal of Eating Disorders, Vol.12, pp.1-16
Publisher: BioMed Central Ltd.
Date published: 2024
DOI: 10.1186/s40337-024-01016-w
ISSN: 2050-2974
PMID: 38831456; PMC11145809
Copyright note: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Data Availability: No datasets were generated or analysed during the current study.
Organisation Unit: Thompson Institute; School of Law and Society
Language: English
Record Identifier: 991029098902621
Output Type: Journal article

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