Re: Assisted dying laws around the world: Proposed UK Assisted Dying Bill Fails the Public Safety Test
Dear Editor,
As the UK Parliament prepares to debate assisted dying, its impact on those with mental health conditions, particularly eating disorders, must be urgently considered. If legalised, the proposed bill may enable patients with treatable eating disorders who have life-threatening malnutrition and/or feel suicidal to qualify for assisted death. Looi (1) highlights global expansion in assisted dying laws, yet gaps in safeguarding vulnerable groups remain.
Research suggests assisted dying laws have already led to preventable deaths of young people with eating disorders in multiple countries (2). At least 60 individuals with eating disorders have died through physician-assisted death, including in jurisdictions limiting the practice to terminal conditions. Of these, one-third involved women under 30. These deaths raise profound ethical concerns, as many patients were severely depressed or suicidal when deemed eligible.
These patients did not have concurrent terminal illnesses. Rather, clinicians asserted their eating disorders were “untreatable,” offering limited substantiating evidence. Some practitioners suggested patients had “terminal anorexia,” a term not recognised by any medical authority (3). Downs et al. (4) described it as a “nosological free-for-all,” highlighting the danger of inventing new illness classifications to justify ending vulnerable lives under the guise of medical treatment. Empirical efforts to validate terminal anorexia have raised significant questions about its validity (5). Anorexia nervosa is not a terminal condition; almost all the medical complications of eating disorders are reversible with nutrition and weight restoration (6).
The proposed bill aims to restrict eligibility to terminal illness — in practice, this safeguard is porous. In Oregon US, officials interpret “terminal illness” as any condition expected to cause death within six months if untreated (7). Patients with non-terminal conditions can become terminal by choosing to forego life-extending treatments, such as dialysis. This has led to deaths in patients with non-terminal conditions; including anorexia, arthritis, and hernias (8). The wording of the proposed U.K. bill similarly allows for this broad interpretation, offering minimal protection to vulnerable patients (9).
Assessing capacity to make a life-ending decision is particularly fraught in patients with malnutrition or mental distress (10, 11) who may appear lucid and articulate, yet struggle to process information fully. Evidence suggests that clinicians’ judgments of capacity in these patients are often inconsistent (11). In Oregon, only three individuals who received lethal prescriptions (1%) were referred for psychiatric evaluation in 2023, down from 33% in previous years (12), raising concerns that evaluators have become less cautious about capacity and psychiatric comorbidities.
Moreover, evidence from jurisdictions where assisted dying is legal reveals weak oversight and opaque reporting mechanisms (13). For example, U.S. oversight agencies confirmed anorexia nervosa has been documented as a terminal illness in cases of assisted death; however, these cases are hidden in public reports under the broad category “Other Illnesses” (2). Officials declined to disclose the exact number of cases, and agencies have limited authority to investigate potential misapplications of the law.
In the UK, the Court of Protection has already allowed treatment withdrawal and palliative care for eating disorders deemed ‘untreatable’ (14). However, researchers have raised concerns that many patients are labeled 'untreatable' without having received adequate treatment (4). If the proposed bill passes, “palliative care for eating disorders” may expand to assisted dying, undermining protections for those with complex, often stigmatised mental health conditions.
Evidence from other jurisdictions should serve as a stark warning to UK policymakers. The question before Parliament is not only whether individuals have the right to die, but whether assisted dying can be safely implemented within the NHS. Evidence from other countries shows that safeguards intended to protect vulnerable patients from medically-assisted suicide have failed. We urge MPs to weigh these findings carefully and vote against the bill—it fails the public safety test.
Chelsea Roff
Executive Director, Eat Breathe Thrive
James Downs
Peer Researcher and Expert by Experience
Agnes Ayton
Consultant Psychiatrist in Eating Disorders
Oxford Health NHS Foundation Trust
Ashish Kumar
Chair, Faculty of Eating Disorders, RCPsych
Clinical Director at Mersey Care Foundation Trust
Angela Guarda
Professor of Psychiatry and Behavioral Sciences Director
Eating Disorders Program Johns Hopkins School of Medicine
Patricia Westmoreland
Medical Director, ACUTE Center for Eating Disorders & Severe Malnutrition
Department of Psychiatry, University of Colorado
Philip Mehler
Founder, ACUTE Center for Eating Disorders & Severe Malnutrition
Professor of Medicine, University of Colorado
Mark S. Komrad
Faculty of Psychiatry
Johns Hopkins School of Medicine, Tulane, and University of Maryland
Paul Appelbaum
Dollard Professor of Psychiatry, Medicine & Law
Columbia University
Ronald W. Pies
Professor Emeritus of Psychiatry
SUNY Upstate Medical University
Annette Hanson
Assistant Professor
University of Maryland
Catherine Cook-Cotton
Licensed Psychologist, Professor and Researcher
University at Buffalo (SUNY)
Anita Federici
Clinical Psychologist
Center for Psychology and Emotion Regulation
Hope Virgo
Founder of #DumptheScales, Author,
Mental Health Campaigner
Ali Ibrahim
Consultant Psychiatrist, Eating Disorders
Suzanne Baker
Family & Carer Representative, FEAST UK
Marissa Adams
Peer Research & Expert by Experience
References
1. Looi, M. K. (2024). Assisted dying laws around the world. bmj, 387.
2. Roff, C., & Cook-Cottone, C. (2024). Assisted death in eating disorders: a systematic review of cases and clinical rationales. Frontiers in Psychiatry, 15, 1431771.
3. Gaudiani, J. L., Bogetz, A., & Yager, J. (2022). Terminal anorexia nervosa: three cases and proposed clinical characteristics. Journal of eating disorders, 10(1), 23.
4. Downs, J., Ayton, A., Collins, L., Baker, S., Missen, H., & Ibrahim, A. (2023). Untreatable or unable to treat? Creating more effective and accessible treatment for long-standing and severe eating disorders. The Lancet Psychiatry, 10(2), 146-154.
5. Robison M, Udupa NS, Abber SR, Duffy A, Riddle M, Manwaring J, Rienecke RD, Westmoreland P, Blalock DV, Le Grange D, Mehler PS, Joiner TE. "Terminal anorexia nervosa" may not be terminal: An empirical evaluation. J Psychopathol Clin Sci. 2024 Apr;133(3):285-296. doi: 10.1037/abn0000912. PMID: 38619462; PMCID: PMC11062513.
6. Westmoreland P, Krantz MJ, Mehler PS. Medical Complications of Anorexia Nervosa and Bulimia. Am J Med. 2016 Jan;129(1):30-7. doi: 10.1016/j.amjmed.2015.06.031. Epub 2015 Jul 10. PMID: 26169883.
7. Stahle F. Notarized Questions to Oregon Health Authority. January 2018. Available online: https://drive.google.com/file/d/1XopTDjBA2SAVBGBxpDazNN899eTHixSe/view
8. Oregon Health Authority. Oregon Death with Dignity Act: 2021 Data Summary (2022). Available online at: https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARC...
9. Leadbeater K. Terminally Ill Adults (End of Life) Bill. Nov 11, 2024. https://bills.parliament.uk/bills/3774 [Accessed 14th November 2024].
10. Van Elburg, A., Danner, U. N., Sternheim, L. C., Lammers, M., & Elzakkers, I. (2021). Mental capacity, decision-making and emotion dysregulation in severe enduring anorexia nervosa. Frontiers in Psychiatry, 12, 545317.
11. Elzakkers, I. F. F. M., Danner, U. N., Grisso, T., Hoek, H. W., & van Elburg, A. A. (2018). Assessment of mental capacity to consent to treatment in anorexia nervosa: A comparison of clinical judgment and MacCAT-T and consequences for clinical practice. International journal of law and psychiatry, 58, 27–35. https://doi.org/10.1016/j.ijlp.2018.02.001
12. Oregon Health Authority. Oregon Death with Dignity Act: 2023 Data Summary (2024). Available online at: https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARC...
13. Raikin, A. (2024). A pattern of non-compliance. The New Atlantis. 11 November 2024.
14. Cave, E., & Tan, J. (2017). Severe and enduring anorexia nervosa in the England and Wales Court of Protection. International Journal of Mental Health and Capacity Law, 23(17).
Competing interests:
No competing interests
14 November 2024
Chelsea D Roff
Executive Director
James Downs, Dr. Agnes Ayton, Dr. Ali Ibrahim, Dr. Angela Guarda, Dr. Annette Hanson, Dr. Anita Federici, Dr. Ashish Kumar, Dr. Catherine Cook Cottone, Chelsea Roff, Hope Virgo, Marissa Adams, Dr. Mark Komrad, Dr. Patricia Westmoreland, Dr. Paul Appelbaum, Dr. Philip Mehler, Dr. Ronald Pies, Suzanne Baker
Rapid Response:
Re: Assisted dying laws around the world: Proposed UK Assisted Dying Bill Fails the Public Safety Test
Dear Editor,
As the UK Parliament prepares to debate assisted dying, its impact on those with mental health conditions, particularly eating disorders, must be urgently considered. If legalised, the proposed bill may enable patients with treatable eating disorders who have life-threatening malnutrition and/or feel suicidal to qualify for assisted death. Looi (1) highlights global expansion in assisted dying laws, yet gaps in safeguarding vulnerable groups remain.
Research suggests assisted dying laws have already led to preventable deaths of young people with eating disorders in multiple countries (2). At least 60 individuals with eating disorders have died through physician-assisted death, including in jurisdictions limiting the practice to terminal conditions. Of these, one-third involved women under 30. These deaths raise profound ethical concerns, as many patients were severely depressed or suicidal when deemed eligible.
These patients did not have concurrent terminal illnesses. Rather, clinicians asserted their eating disorders were “untreatable,” offering limited substantiating evidence. Some practitioners suggested patients had “terminal anorexia,” a term not recognised by any medical authority (3). Downs et al. (4) described it as a “nosological free-for-all,” highlighting the danger of inventing new illness classifications to justify ending vulnerable lives under the guise of medical treatment. Empirical efforts to validate terminal anorexia have raised significant questions about its validity (5). Anorexia nervosa is not a terminal condition; almost all the medical complications of eating disorders are reversible with nutrition and weight restoration (6).
The proposed bill aims to restrict eligibility to terminal illness — in practice, this safeguard is porous. In Oregon US, officials interpret “terminal illness” as any condition expected to cause death within six months if untreated (7). Patients with non-terminal conditions can become terminal by choosing to forego life-extending treatments, such as dialysis. This has led to deaths in patients with non-terminal conditions; including anorexia, arthritis, and hernias (8). The wording of the proposed U.K. bill similarly allows for this broad interpretation, offering minimal protection to vulnerable patients (9).
Assessing capacity to make a life-ending decision is particularly fraught in patients with malnutrition or mental distress (10, 11) who may appear lucid and articulate, yet struggle to process information fully. Evidence suggests that clinicians’ judgments of capacity in these patients are often inconsistent (11). In Oregon, only three individuals who received lethal prescriptions (1%) were referred for psychiatric evaluation in 2023, down from 33% in previous years (12), raising concerns that evaluators have become less cautious about capacity and psychiatric comorbidities.
Moreover, evidence from jurisdictions where assisted dying is legal reveals weak oversight and opaque reporting mechanisms (13). For example, U.S. oversight agencies confirmed anorexia nervosa has been documented as a terminal illness in cases of assisted death; however, these cases are hidden in public reports under the broad category “Other Illnesses” (2). Officials declined to disclose the exact number of cases, and agencies have limited authority to investigate potential misapplications of the law.
In the UK, the Court of Protection has already allowed treatment withdrawal and palliative care for eating disorders deemed ‘untreatable’ (14). However, researchers have raised concerns that many patients are labeled 'untreatable' without having received adequate treatment (4). If the proposed bill passes, “palliative care for eating disorders” may expand to assisted dying, undermining protections for those with complex, often stigmatised mental health conditions.
Evidence from other jurisdictions should serve as a stark warning to UK policymakers. The question before Parliament is not only whether individuals have the right to die, but whether assisted dying can be safely implemented within the NHS. Evidence from other countries shows that safeguards intended to protect vulnerable patients from medically-assisted suicide have failed. We urge MPs to weigh these findings carefully and vote against the bill—it fails the public safety test.
Chelsea Roff
Executive Director, Eat Breathe Thrive
James Downs
Peer Researcher and Expert by Experience
Agnes Ayton
Consultant Psychiatrist in Eating Disorders
Oxford Health NHS Foundation Trust
Ashish Kumar
Chair, Faculty of Eating Disorders, RCPsych
Clinical Director at Mersey Care Foundation Trust
Angela Guarda
Professor of Psychiatry and Behavioral Sciences Director
Eating Disorders Program Johns Hopkins School of Medicine
Patricia Westmoreland
Medical Director, ACUTE Center for Eating Disorders & Severe Malnutrition
Department of Psychiatry, University of Colorado
Philip Mehler
Founder, ACUTE Center for Eating Disorders & Severe Malnutrition
Professor of Medicine, University of Colorado
Mark S. Komrad
Faculty of Psychiatry
Johns Hopkins School of Medicine, Tulane, and University of Maryland
Paul Appelbaum
Dollard Professor of Psychiatry, Medicine & Law
Columbia University
Ronald W. Pies
Professor Emeritus of Psychiatry
SUNY Upstate Medical University
Annette Hanson
Assistant Professor
University of Maryland
Catherine Cook-Cotton
Licensed Psychologist, Professor and Researcher
University at Buffalo (SUNY)
Anita Federici
Clinical Psychologist
Center for Psychology and Emotion Regulation
Hope Virgo
Founder of #DumptheScales, Author,
Mental Health Campaigner
Ali Ibrahim
Consultant Psychiatrist, Eating Disorders
Suzanne Baker
Family & Carer Representative, FEAST UK
Marissa Adams
Peer Research & Expert by Experience
References
1. Looi, M. K. (2024). Assisted dying laws around the world. bmj, 387.
2. Roff, C., & Cook-Cottone, C. (2024). Assisted death in eating disorders: a systematic review of cases and clinical rationales. Frontiers in Psychiatry, 15, 1431771.
3. Gaudiani, J. L., Bogetz, A., & Yager, J. (2022). Terminal anorexia nervosa: three cases and proposed clinical characteristics. Journal of eating disorders, 10(1), 23.
4. Downs, J., Ayton, A., Collins, L., Baker, S., Missen, H., & Ibrahim, A. (2023). Untreatable or unable to treat? Creating more effective and accessible treatment for long-standing and severe eating disorders. The Lancet Psychiatry, 10(2), 146-154.
5. Robison M, Udupa NS, Abber SR, Duffy A, Riddle M, Manwaring J, Rienecke RD, Westmoreland P, Blalock DV, Le Grange D, Mehler PS, Joiner TE. "Terminal anorexia nervosa" may not be terminal: An empirical evaluation. J Psychopathol Clin Sci. 2024 Apr;133(3):285-296. doi: 10.1037/abn0000912. PMID: 38619462; PMCID: PMC11062513.
6. Westmoreland P, Krantz MJ, Mehler PS. Medical Complications of Anorexia Nervosa and Bulimia. Am J Med. 2016 Jan;129(1):30-7. doi: 10.1016/j.amjmed.2015.06.031. Epub 2015 Jul 10. PMID: 26169883.
7. Stahle F. Notarized Questions to Oregon Health Authority. January 2018. Available online: https://drive.google.com/file/d/1XopTDjBA2SAVBGBxpDazNN899eTHixSe/view
8. Oregon Health Authority. Oregon Death with Dignity Act: 2021 Data Summary (2022). Available online at: https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARC...
9. Leadbeater K. Terminally Ill Adults (End of Life) Bill. Nov 11, 2024. https://bills.parliament.uk/bills/3774 [Accessed 14th November 2024].
10. Van Elburg, A., Danner, U. N., Sternheim, L. C., Lammers, M., & Elzakkers, I. (2021). Mental capacity, decision-making and emotion dysregulation in severe enduring anorexia nervosa. Frontiers in Psychiatry, 12, 545317.
11. Elzakkers, I. F. F. M., Danner, U. N., Grisso, T., Hoek, H. W., & van Elburg, A. A. (2018). Assessment of mental capacity to consent to treatment in anorexia nervosa: A comparison of clinical judgment and MacCAT-T and consequences for clinical practice. International journal of law and psychiatry, 58, 27–35. https://doi.org/10.1016/j.ijlp.2018.02.001
12. Oregon Health Authority. Oregon Death with Dignity Act: 2023 Data Summary (2024). Available online at: https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARC...
13. Raikin, A. (2024). A pattern of non-compliance. The New Atlantis. 11 November 2024.
14. Cave, E., & Tan, J. (2017). Severe and enduring anorexia nervosa in the England and Wales Court of Protection. International Journal of Mental Health and Capacity Law, 23(17).
Competing interests: No competing interests