Navigating the ethical complexities of severe and enduring (longstanding) eating disorders: tools for critically reflective practice and collaborative decision-making.
Critical reflection
Cultural safety
Ethics
Human rights
Lived experience
Longstanding eating disorders
Practice guide
Severe and enduring anorexia nervosa (SE-AN)
Severe and enduring eating disorder (SEED)
Journal
Journal of eating disorders
ISSN: 2050-2974
Titre abrégé: J Eat Disord
Pays: England
ID NLM: 101610672
Informations de publication
Date de publication:
06 Sep 2024
06 Sep 2024
Historique:
received:
29
04
2024
accepted:
09
08
2024
medline:
7
9
2024
pubmed:
7
9
2024
entrez:
6
9
2024
Statut:
epublish
Résumé
Decisions about the treatment of eating disorders do not occur in a socio-political vacuum. They are shaped by power relations that produce categories of risk and determine who is worthy of care. This impacts who gets access to care and recognition of rights in mental health services. Globally, there are calls for more human rights-based approaches in mental health services to reduce coercion, improve collaborative decision making and enhance community care. Treating individuals with longstanding, Severe and Enduring Eating Disorders (SEED) or Severe and Enduring Anorexia Nervosa (SE-AN) can be particularly problematic when it involves highly controversial issues such as treatment withdrawal and end-of-life decisions and, where legally permissible, medically assisted dying. In this article, we argue that the socio-political context in which clinical decision making occurs must be accounted for in these ethical considerations. This encompasses considerations of how power and resources are distributed, who controls these decisions, who benefits and who is harmed by these decisions, who is excluded from services, and who is marginalised in decision making processes. The article also presents tools for critically reflective practice and collaborative decision-making that can support clinicians in considering power factors in their practice and assisting individuals with longstanding eating disorders, SEED and SE-AN to attain their rights in mental health services.
Identifiants
pubmed: 39243050
doi: 10.1186/s40337-024-01082-0
pii: 10.1186/s40337-024-01082-0
doi:
Types de publication
Journal Article
Review
Langues
eng
Pagination
134Informations de copyright
© 2024. The Author(s).
Références
Carney T, Yager J, Maguire S, Touyz SW. Involuntary treatment and quality of life. Psychiatr Clin. 2019;42(2):299–307.
World Health Organisation. Guidance on community mental health services: promoting person-centred and rights-based approaches. Geneva; 2021.
Garrett PM. Social work and social theory making connections. Policy Press. 2013.
Collins C, McCartney G, Garnham L. Neoliberalism and health inequalities. Health inequalities: Critical perspectives. 2015;124.
Khoury E, Rodriguez del Barrio L. Recovery-oriented mental health practice: a social work perspective. Br J Soc Work. 2015;45(suppl_1):i27–44.
Rizq R. Perversion, neoliberalism and therapy: The audit culture in mental health services. Springer; 2014.
Viens AM. Neo-liberalism, austerity and the political determinants of health. Health Care Anal. 2019;27(3):147–52.
pubmed: 31297702
doi: 10.1007/s10728-019-00377-7
Ramon S. Neoliberalism and its implications for mental health in the UK. Int J Law Psychiatry. 2008;31(2):116–25.
pubmed: 18342370
doi: 10.1016/j.ijlp.2008.02.006
Sakellariou D, Rotarou ES. Access to healthcare for men and women with disabilities in the UK: Secondary analysis of cross-sectional data. BMJ Open. 2017;7(8): e016614.
pubmed: 28893735
pmcid: 5629679
doi: 10.1136/bmjopen-2017-016614
Sakellariou D, Rotarou ES. The effects of neoliberal policies on access to healthcare for people with disabilities. Int J Equity Health. 2017;16:1–8.
doi: 10.1186/s12939-017-0699-3
Emslie M, Watts R. On technology and the prospects for good practice in the human services: Donald Schön, Martin Heidegger, and the case for phronesis and praxis. Social Serv Rev. 2017;91(2):319–56.
doi: 10.1086/692117
Ali K, Farrer L, Fassnacht DB, Gulliver A, Bauer S, Griffiths KM. Perceived barriers and facilitators towards help-seeking for eating disorders: A systematic review. Int J Eat Disord. 2017;50(1):9–21.
pubmed: 27526643
doi: 10.1002/eat.22598
Kästner D, Weigel A, Buchholz I, Voderholzer U, Löwe B, Gumz A. Facilitators and barriers in anorexia nervosa treatment initiation: a qualitative study on the perspectives of patients, carers and professionals. J Eat Disord. 2021;9:1–11.
doi: 10.1186/s40337-021-00381-0
Flintoff A, Speed E, McPherson S. Risk assessment practice within primary mental health care: a logics perspective. Health. 2019;23(6):656–74.
pubmed: 29652182
doi: 10.1177/1363459318769471
Brand G, Wise S, Calvert S. Holding Hope: Co-producing eating disorders education that integrates the lived experience voice to inform best practice. J Psychiatr Ment Health Nurs. 2023;30(2):155–61.
pubmed: 36040242
doi: 10.1111/jpm.12870
Dawson L, Rhodes P, Touyz S. “Doing the impossible” the process of recovery from chronic anorexia nervosa. Qual Health Res. 2014;24(4):494–505.
pubmed: 24594747
doi: 10.1177/1049732314524029
Barko EB, Moorman SM. Weighing in: qualitative explorations of weight restoration as recovery in anorexia nervosa. J Eat Disord. 2023;11(1):14.
pubmed: 36721222
pmcid: 9887881
doi: 10.1186/s40337-023-00736-9
Reid M, Williams S, Burr J. Perspectives on eating disorders and service provision: a qualitative study of healthcare professionals. Eur Eat Disord Rev. 2010;18(5):390–8.
pubmed: 20821740
doi: 10.1002/erv.976
Cosgrove L, Karter JM. The poison in the cure: Neoliberalism and contemporary movements in mental health. Theory Psychol. 2018;28(5):669–83.
doi: 10.1177/0959354318796307
Karban K. Developing a health inequalities approach for mental health social work. Br J Soc Work. 2017;47(3):885–992.
Zeira A. Mental health challenges related to neoliberal capitalism in the United States. Commun Ment Health J. 2022;58(2):205–12.
doi: 10.1007/s10597-021-00840-7
Sharpe SL, Adams M, Smith EK, Urban B, Silverstein S. Inaccessibility of care and inequitable conceptions of suffering: a collective response to the construction of “terminal” anorexia nervosa. J Eating Disord BioMed Central Ltd.; 2023; 11
Eiring K, Wiig Hage T, Reas DL. Exploring the experience of being viewed as “not sick enough”: a qualitative study of women recovered from anorexia nervosa or atypical anorexia nervosa. J Eat Disord. 2021;9:1–10.
doi: 10.1186/s40337-021-00495-5
Wand T. Investigating the evidence for the effectiveness of risk assessment in mental health care. Issues Ment Health Nurs. 2011;33(1):2–7.
doi: 10.3109/01612840.2011.616984
Coffey M, Cohen R, Faulkner A, Hannigan B, Simpson A, Barlow S. Ordinary risks and accepted fictions: how contrasting and competing priorities work in risk assessment and mental health care planning. Health Expect. 2017;20(3):471–83.
pubmed: 27312732
doi: 10.1111/hex.12474
Godin P. ‘You don’t tick boxes on a form’: A study of how community mental health nurses assess and manage risk. Health Risk Soc. 2004;6(4):347–60.
doi: 10.1080/13698570412331323234
Petersen A. Risk, governance and the new public health. In: Foucault, health and medicine. Routledge, 2002; 189–206.
Power M. The Risk Management of Everything: Rethinking the Politics of Uncertainty. London: Demos; 2004.
doi: 10.1108/eb023001
Undrill G. The risks of risk assessment. Adv Psychiatr Treat. 2007;13(4):291–7.
doi: 10.1192/apt.bp.106.003160
Elwyn R. A lived experience response to the proposed diagnosis of terminal anorexia nervosa: learning from iatrogenic harm, ambivalence and enduring hope. J Eat Disord. 2023; 11
Kendall S. Anorexia nervosa: the diagnosis: a postmodern ethics contribution to the bioethics debate on involuntary treatment for anorexia nervosa. J Bioeth Inq. 2014;11(1):31–40.
pubmed: 24366443
doi: 10.1007/s11673-013-9496-x
Kendall S, Hugman R. Power/knowledge and the ethics of involuntary treatment for anorexia nervosa in context: A social work contribution to the debate. Br J Social Work. 2016;46(3):686–702.
doi: 10.1093/bjsw/bcu134
Brownson RC, Burke TA, Colditz GA, Samet JM. Reimagining public health in the aftermath of a pandemic. Am J Public Health. 2020;110(11):1605–10.
pubmed: 32816552
pmcid: 7542265
doi: 10.2105/AJPH.2020.305861
Hewitt S. A time to heal: eliminating barriers to coverage for patients with eating disorders under the Affordable Care Act. Law Ineq. 2012;31:411.
Nazroo JY, Bhui KS, Rhodes J. Where next for understanding race/ethnic inequalities in severe mental illness? Structural, interpersonal and institutional racism. Sociol Health Illn. 2020;42(2):262–76.
pubmed: 31562655
doi: 10.1111/1467-9566.13001
Salminen-Karlsson M, Golay D. Information systems in nurses’ work: Technical rationality versus an ethic of care. New Technol Work Employ. 2022;37(2):270–87.
doi: 10.1111/ntwe.12231
Westmoreland P, Parks L, Lohse K, Mehler P. Severe and Enduring Anorexia Nervosa and Futility. Psychiatr Clin North Am. 2021;44(4): 603611.
doi: 10.1016/j.psc.2021.08.003
Geppert CMA. Futility in chronic anorexia nervosa: a concept whose time has not yet come. Am J Bioeth. 2015;15(7):34–43.
pubmed: 26147264
doi: 10.1080/15265161.2015.1039720
Yager J. The futility of arguing about medical futility in anorexia nervosa: the question is how would you handle highly specific circumstances? Am J Bioeth. 2015;15(7):47–50.
pubmed: 26147266
doi: 10.1080/15265161.2015.1039724
Fenton J. Bringing together messages from the literature on criminal justice social work and ‘disjuncture’: The importance of ‘helping.’ Br J Soc Work. 2012;42(5):941–56.
doi: 10.1093/bjsw/bcr136
Fenton J. Risk aversion and anxiety in Scottish criminal justice social work: can desistance and human rights agendas have an impact? Howard J Crim Justice. 2013;52(1):77–90.
doi: 10.1111/j.1468-2311.2012.00716.x
Fenton J. An analysis of ‘ethical stress’ in criminal justice social work in Scotland: the place of values. Br J Soc Work. 2015;45(5):1415–32.
doi: 10.1093/bjsw/bcu032
Fook J. Critical reflectivity in education and practice. In: Transforming social work practice. Routledge, 2016; 195–208.
Popay J, Whitehead M, Ponsford R, Egan M, Mead R. Power, control, communities and health inequalities I: theories, concepts and analytical frameworks. Health Promot Int. 2021;36(5):1253–63.
pubmed: 33382890
doi: 10.1093/heapro/daaa133
Broomfield C, Stedal K, Touyz S, Rhodes P. Labeling and defining severe and enduring anorexia nervosa: a systematic review and critical analysis. Int J Eat Disord. 2017;50(6):611–23.
pubmed: 28444828
doi: 10.1002/eat.22715
Hay P, Touyz S. Classification challenges in the field of eating disorders: Can severe and enduring anorexia nervosa be better defined?. J Eat Disord BioMed Central Ltd.; 2018; 6
Robinson P. Severe and enduring eating disorders: Recognition and management. Adv Psychiatr Treat. 2014;20(6):392–401.
doi: 10.1192/apt.bp.113.011841
Keski-Rahkonen A. Epidemiology of binge eating disorder: prevalence, course, comorbidity, and risk factors. Curr Opin Psychiatry. 2021;34(6):525–31.
pubmed: 34494972
doi: 10.1097/YCO.0000000000000750
Keski-Rahkonen A, Mustelin L. Epidemiology of eating disorders in Europe: Prevalence, incidence, comorbidity, course, consequences, and risk factors. Curr Opin Psychiatry. 2016 [cited 2019 Oct 19];29(6):340–5. Available from: https://journals.lww.com/co-psychiatry/FullText/2016/11000/Epidemiology_of_eating_disorders_in_Europe__.5.aspx
Demmler JC, Brophy ST, Marchant A, John A, Tan J. Shining the light on eating disorders, incidence, prognosis and profiling of patients in primary and secondary care: national data linkage study. Br J Psychiatry. 2019;1–8.
Preti A, de Girolamo G, Vilagut G, Alonso J, de Graaf R, Bruffaerts R, et al. The epidemiology of eating disorders in six European countries: results of the ESEMeD-WMH project. J Psychiatr Res. 2009;43(14):1125–32.
pubmed: 19427647
doi: 10.1016/j.jpsychires.2009.04.003
Arkell J, Robinson P. A pilot case series using qualitative and quantitative methods: Biological, psychological and social outcome in severe and enduring eating disorder (anorexia nervosa). Int J Eat Disord. 2008;41(7):650–6.
pubmed: 18446832
doi: 10.1002/eat.20546
Robinson PH, Kukucska R, Guidetti G, Leavey G. Severe and enduring anorexia nervosa (SEED-AN): a qualitative study of patients with 20+ years of anorexia nervosa. Eur Eat Disord Rev. 2015;23(4):318–26.
pubmed: 26059633
doi: 10.1002/erv.2367
Westmoreland P, Mehler PS. Caring for patients with severe and enduring eating disorders (SEED): certification, harm reduction, palliative care, and the question of futility. J Psychiatr Pract. 2016;22(4):313–20.
pubmed: 27427843
doi: 10.1097/PRA.0000000000000160
Brockmeyer T, Friederich HC, Schmidt U. Advances in the treatment of anorexia nervosa: a review of established and emerging interventions. Psychol Med. 2018;48(8):1228–56.
pubmed: 28889819
doi: 10.1017/S0033291717002604
Atwood ME, Friedman A. A systematic review of enhanced cognitive behavioral therapy (CBT-E) for eating disorders. Int J Eat Disord. 2020;53(3):311–30.
pubmed: 31840285
doi: 10.1002/eat.23206
Murray SA, Kendall M, Carduff E, Worth A, Harris FM, Lloyd A, et al. Use of serial qualitative interviews to understand patients’ evolving experiences and needs. BMJ. 2009;339.
Steinhausen H christoph. Reviews and Overviews The Outcome of Anorexia Nervosa in the 20th Century. Psychiatry: Interpersonal and Biological Processes. 2002;(August):1284–93.
Fichter MM, Quadflieg N. Mortality in eating disorders—Results of a large prospective clinical longitudinal study. International Journal of Eating Disorders. 2016 [cited 2019 Oct 19];49(4):391–401. Available from: https://doi.org/10.1002/eat.22501
Touyz S, Le Grange D, Lacey H, Hay P, Smith R, Maguire S, et al. Treating severe and enduring anorexia nervosa: a randomized controlled trial. Psychol Med. 2013;43(12):2501–11.
pubmed: 23642330
doi: 10.1017/S0033291713000949
Kotilahti E, West M, Isomaa R, Karhunen L, Rocks T, Ruusunen A. Treatment interventions for severe and enduring eating disorders: systematic review. Int J Eat Disord. 2020;53(8):1280–302.
pubmed: 32488936
doi: 10.1002/eat.23322
Eddy KT, Tabri N, Thomas JJ, Murray HB, Keshaviah A, Hastings E, et al. Recovery from anorexia nervosa and bulimia nervosa at 22-year follow-up. J Clin Psychiatry. 2017;78(2):17085.
doi: 10.4088/JCP.15m10393
Murray SB. Updates in the treatment of eating disorders in 2018: a year in review in eating disorders: the journal of treatment & prevention. Eat Disord. 2019;27(1):6–17.
pubmed: 30663545
doi: 10.1080/10640266.2019.1567155
Geppert CMA, Yager J, Kerwin J. Futility. In: Westmoreland P, editor. Tipping the scales: ethical and legal dilemmas in managing severe eating disorders . Am Psychiatric Pub. 2020; 168.
Gaudiani JL, Bogetz A, Yager J. Terminal anorexia nervosa: three cases and proposed clinical characteristics. J Eat Disord. 2022;10(1):1–14.
doi: 10.1186/s40337-022-00548-3
Guarda AS, Hanson A, Mehler P, Westmoreland P. Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined. J Eat Disord. 2022;10(1):1–3. https://doi.org/10.1186/s40337-022-00599-6.pdf .
doi: 10.1186/s40337-022-00599-6.pdf
Phillipou A. The importance of terminology, lived experience inclusion and scientific discussion regarding end-of-life care in anorexia nervosa: a response to Gaudiani et al. J Eat Disord BioMed Central Ltd. 2023; 11
Cliffe C, Shetty H, Himmerich H, Schmidt U, Stewart R, Dutta R. Suicide attempts requiring hospitalization in patients with eating disorders: a retrospective cohort study. Int J Eat Disord. 2020;53(5):728–35.
doi: 10.1002/eat.23240
Calvert S. Holding Hope: Exploring compassionate & holistic care pathways for longstanding eating disorders. 2024 Jun [cited 2024 Apr 29]. Available from: https://nedc.com.au
Fulford KWM, Woodbridge K. Whose Values? A workbook for values-based practice in mental health care. Sainsbury Centre for Mental Health; 2004 [cited 2024 Feb 12]. Available from: https://valuesbasedpractice.org/wp-content/uploads/2015/04/Whose-Values-A-Workbook.pdf
Fulford KWM. Ten principles of Values-Based Medicine (VBM). In: Philosophy and Psychiatry. 2004; 50–80.
Fulford KWM. Values-Based Practice: A New Partner to Evidence-Based Practice and A First for Psychiatry? Mens Sana Monogr. 2008;6(1):10. Available from: http://www.msmonographs.org/text.asp?2008/6/1/10/40565
Fulford KWM. The value of evidence and evidence of values: Bringing together values-based and evidence-based practice in policy and service development in mental health. J Eval Clin Pract. 2011;17(5):976–87.
pubmed: 21951930
doi: 10.1111/j.1365-2753.2011.01732.x
Tan JOA, Fulford KWM. Covid Crisis, Natural Capital and Clinical Care: ‘Building Back Better’ for a New Values-based CAMHS. Child Adolesc Ment Health. 2020;in print.
The Collaborating Centre for Values-based practice in Health and Social Care. The Collaborating Centre for Values-based practice in Health and Social Care, St Catherine’s College, Oxford: More about VBP. 2017 [cited 2017 Oct 23]. Available from: http://valuesbasedpractice.org/more-about-vbp/
The Collaborating Centre for Values-based practice in Health and Social Care. The Collaborating Centre for Values-based practice in Health and Social Care, St Catherine’s College, Oxford: The Values-Based Child and Adolescent Mental Health system (VB CAMHs) Network. 2017 [cited 2017 Oct 23]. Available from: http://valuesbasedpractice.org/what-do-we-do/networks/the-values-based-child-and-adolescent-mental-health-system-vb-camhs-network/
Woodbridge K, Fulford KWM. Whose values? A workbook for values-based practice in mental health care. A workbook for values-based practice in mental health care London: Sainsbury Centre for Mental Health. 2004;15.
Tan J, Gray F. Primary Care in Eating Disorders. In: Eating disorders: an international comprehensive view. 2023; 1–21.
Tan J, Jamieson SK, Anderson S. Ethical Issues in the Treatment of Eating Disorders. In: Eating disorders. Springer International Publishing. 2023; 1–25.
Papps E, Ramsden I. Cultural safety in nursing: The New Zealand experience. Int J Qual Health Care. 1996;8(5):491–7.
pubmed: 9117203
doi: 10.1093/intqhc/8.5.491
Geia L, Baird K, Bail K, Barclay L, Bennett J, Best O, et al. A unified call to action from Australian nursing and midwifery leaders: ensuring that Black lives matter. Contemp Nurse. 2020;56(4):297–308.
pubmed: 32799620
doi: 10.1080/10376178.2020.1809107
Sherwood J, Mohamed J. Racism a social determinant of indigenous health: yarning about cultural safety and cultural competence strategies to improve indigenous health. Cultural competence and the higher education sector: Australian perspectives, policies and practice. 2020;159–74.
Stewart A, Tan J. Ethical and legal issues. In: Lask B, Bryant-Waugh R, editors. Eating disorders in childhood and adolescence (4th ed). Routledge/Taylor & Francis Group; 2013. p. 319–47. Available from: http://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=2013-09918-017&site=ehost-live
Cave E, Tan J. Severe and enduring anorexia nervosa in the court of protection in England and Wales. Cave, Emma & Tan, Jacinta (2017) Severe and Enduring Anorexia Nervosa in the England and Wales Court of Protection International Journal of Mental Health and Capacity Law. 2017;23(17):4–24. Available from: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3075225
Calati R, Olié E, Dassa D, Gramaglia C, Guillaume S, Madeddu F, et al. Euthanasia and assisted suicide in psychiatric patients: A systematic review of the literature. Euthana-sia and assisted suicide in psychiatric patients: A systematic review of the literature. J Psychiatr Res. 2021;135:153–73. Available from: https://www.sciencedirect.com/science/article/pii/S0022395620311146
Kim SYH, De Vries RG, Peteet JR. Euthanasia and assisted suicide of patients with psychiatric disorders in the Netherlands 2011 to 2014. JAMA Psychiat. 2016;73(4):362–8.
doi: 10.1001/jamapsychiatry.2015.2887
Westmoreland P, Mehler PS. Eating disorders and palliative care. Tipping the scales: ethical and legal dilemmas in managing severe eating disorders. 2020;153.
Bianchi A, Stanley K, Sutandar K. The ethical defensibility of harm reduction and eating disorders. Am J Bioeth. 2021;21(7):46–56.
pubmed: 33370215
doi: 10.1080/15265161.2020.1863509
Tan J, Richards L. Legal and ethical issues in the treatment of really sick patients with anorexia nervosa. In: Robinson PH, Nicholls D, editors. Critical care for anorexia nervosa: The MARSIPAN guidelines in practice. London: Springer; 2015. p. 113–50. Available from: http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=psyc11&NEWS=N&AN=2015-13750-006