دورية أكاديمية
Scoping review of end-of-life care for persons with anorexia nervosa.
| العنوان: | Scoping review of end-of-life care for persons with anorexia nervosa. |
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| المؤلفون: | Westermair AL; Clinical Ethics Unit, University Hospital Basel (USB), University Psychiatric Clinics (UPK) Basel, University Children's Hospital Basel (UKBB), Geriatric University Medicine Felix Platter (UAFP), Basel, Switzerland; Institute of Biomedical Ethics and History of Medicine (IBME), University of Zurich (UZH), Zurich, Switzerland., Weber S; Department of Psychiatry, Psychotherapy and Psychosomatics, Medical Faculty RWTH Aachen University, Aachen, Germany; Department of Palliative Medicine, Medical Faculty RWTH Aachen University, Aachen, Germany., Westmoreland P; Department of Psychiatry, University of Colorado, Denver, Colorado, USA; Eating Recovery Center/Pathlight Mood & Anxiety Centers, Denver, Colorado, USA; ACUTE, Denver Health, Denver, Colorado, USA., Mehler PS; Eating Recovery Center/Pathlight Mood & Anxiety Centers, Denver, Colorado, USA; ACUTE, Denver Health, Denver, Colorado, USA; Department of Medicine, University of Colorado, Denver, Colorado, USA., Elsner F; Department of Palliative Medicine, Medical Faculty RWTH Aachen University, Aachen, Germany., Trachsel M; Clinical Ethics Unit, University Hospital Basel (USB), University Psychiatric Clinics (UPK) Basel, University Children's Hospital Basel (UKBB), Geriatric University Medicine Felix Platter (UAFP), Basel, Switzerland; Faculty of Medicine, University of Basel, Basel, Switzerland. |
| المصدر: | Annals of palliative medicine [Ann Palliat Med] 2024 May; Vol. 13 (3), pp. 685-707. Date of Electronic Publication: 2024 May 17. |
| نوع المنشور: | Journal Article; Review |
| اللغة: | English |
| بيانات الدورية: | Publisher: AME Publishing Company Country of Publication: China NLM ID: 101585484 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 2224-5839 (Electronic) Linking ISSN: 22245820 NLM ISO Abbreviation: Ann Palliat Med Subsets: MEDLINE |
| أسماء مطبوعة: | Original Publication: Hong Kong : AME Publishing Company |
| مواضيع طبية MeSH: | Anorexia Nervosa*/therapy , Anorexia Nervosa*/psychology , Terminal Care*, Adult ; Female ; Humans ; Palliative Care ; Quality of Life |
| مستخلص: | 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. |
| فهرسة مساهمة: | Keywords: End-of-life care (EOL care); anorexia nervosa (AN); clinical ethics; palliative psychiatry; severe and persistent mental illness |
| تواريخ الأحداث: | Date Created: 20240521 Date Completed: 20240604 Latest Revision: 20240606 |
| رمز التحديث: | 20240606 |
| DOI: | 10.21037/apm-23-522 |
| PMID: | 38769800 |
| قاعدة البيانات: | MEDLINE |
| تدمد: | 2224-5839 |
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| DOI: | 10.21037/apm-23-522 |