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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 yea...

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Autores principales: Gaudiani, Jennifer L., Bogetz, Alyssa, Yager, Joel
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8845309/
https://www.ncbi.nlm.nih.gov/pubmed/35168671
http://dx.doi.org/10.1186/s40337-022-00548-3
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author Gaudiani, Jennifer L.
Bogetz, Alyssa
Yager, Joel
author_facet Gaudiani, Jennifer L.
Bogetz, Alyssa
Yager, Joel
author_sort Gaudiani, Jennifer L.
collection PubMed
description 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.
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spelling pubmed-88453092022-02-16 Terminal anorexia nervosa: three cases and proposed clinical characteristics Gaudiani, Jennifer L. Bogetz, Alyssa Yager, Joel J Eat Disord Case Report 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. BioMed Central 2022-02-15 /pmc/articles/PMC8845309/ /pubmed/35168671 http://dx.doi.org/10.1186/s40337-022-00548-3 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis 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/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://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.
spellingShingle Case Report
Gaudiani, Jennifer L.
Bogetz, Alyssa
Yager, Joel
Terminal anorexia nervosa: three cases and proposed clinical characteristics
title Terminal anorexia nervosa: three cases and proposed clinical characteristics
title_full Terminal anorexia nervosa: three cases and proposed clinical characteristics
title_fullStr Terminal anorexia nervosa: three cases and proposed clinical characteristics
title_full_unstemmed Terminal anorexia nervosa: three cases and proposed clinical characteristics
title_short Terminal anorexia nervosa: three cases and proposed clinical characteristics
title_sort terminal anorexia nervosa: three cases and proposed clinical characteristics
topic Case Report
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8845309/
https://www.ncbi.nlm.nih.gov/pubmed/35168671
http://dx.doi.org/10.1186/s40337-022-00548-3
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