Terminally Ill Adults (End of Life) Bill – eating disorders: CLADD briefing

To download this briefing as a PDF, please click here.

Introduction

This briefing is prepared by Professor Gareth Owen, Professor Alex Ruck Keene KC (Hon), Professor Katherine Sleeman and Dr Lucy Stephenson, all members of the Complex Life and Death Decisions Group (CLADD).[1]

The Bill introduced by Lauren Edwards MP is essentially identical to the Bill introduced by Kim Leadbeater MP (the Leadbeater Bill) in 2024. The most important of the three differences is an amendment that was made to the Leadbeater Bill at the point of introduction to the House of Lords by Lord Falconer, seeking to carry through the intent of the previous sponsors that those with eating disorders are not within the scope of the Bill.  In our broader briefing, we set out why the Terminally Ill Adults (End of Life) Bill (‘the TIA Bill’) as it stands is not good law. This briefing looks in more detail at the issue of eating disorders, and why the Bill as introduced by Ms Edwards cannot fully achieve the goal of excluding those with eating disorders from its scope.

Policy intent and the prominence of eating disorders in the debate

Eating disorders, in particular anorexia, formed a particular focus of concern in the debates around the Leadbeater Bill.  Transcripts of the debates on the Bill in the House of Commons contain over 190 references to eating disorders. This count gives a sense of the perhaps surprising prominence of what is generally understood to be a mental illness in a debate about a Bill designed for people with physical, terminal illnesses. We set out below reasons for this prominence; for further detail on the debates, see this article (1).

What is anorexia nervosa?

Anorexia nervosa (hereafter anorexia) has been a particular source of concern.  Anorexia is the most lethal psychiatric disorder because of the possibility of severe nutritional compromise and resultant death (2).  Key symptoms are significant nutritional compromise (BMI under 18.5) driven by restriction of food intake due to concerns about body weight and shape. Anorexia affects around 4% of females and 0.3% males. The onset is usually during adolescence and emerging adulthood but more recently has increased in people under 15 (2). For those diagnosed with anorexia recovery rates are around 50-80%  but a subset of around 20% go on to develop longstanding illness (3). Recovery from anorexia takes on average 7-10 years (4) and is still possible even after many years of illness.

Defining terminal illness and the challenges of eating disorders

In clause 2 the Bill sets out a definition of terminal illness. This appears to be a common-sense definition if one has in mind e.g. a person experiencing a life-limiting cancer. However, it is important to understand that eating disorders might also fit within these definitions. By breaking down the definition of terminal illness in the Bill as it stands (in clause 1), we can see how eating disorders pose a challenge at several stages:

Clause 2 (1)

For the purposes of this Act, a person is terminally ill if—

(a) the person has an inevitably progressive illness or disease which cannot be reversed by treatment, and

Within the field of eating disorders there has been intense debate about the concept of ‘terminal anorexia’(5). This term was proposed to describe those with advanced illness who do not want further treatment, where compulsory treatment is not thought to be appropriate and where death is expected as the natural outcome of no nutritional intake.  From this perspective, the anorexia ‘could not be reversed’ by treatment.  The concept of ‘terminal anorexia’ has proved highly controversial and has largely been rejected by the eating disorder community (6). The term has now been retracted by the original authors who proposed it. Nonetheless, instances persist in clinical practice and in the Court of Protection where the futility of persistent, long term, coercive treatment aimed at nutritional restoration is acknowledged and instead a holistic, supportive approach is taken (7).

In these circumstances, we suggest that it cannot be ruled out that an assessing professional could reasonably conclude that a person with anorexia would – but for the exception in clause 2(2) – satisfy this limb of the terminal illness criterion.  This, in turn, places severe pressure on that exception, discussed below.

Clause 2 (1)

(b) the person’s death in consequence of that illness or disease can reasonably be expected within six months 

It is a simple truth that without hydration or nutritional intake death is certain within a far shorter period than 6 months. For those with severe anorexia there is a high risk of death due to malnutrition unless there is intervention and coercion may be needed to achieve this e.g. compulsory feeding via nasogastric tube. If some degree of nutritional restoration is achieved physical recovery is highly likely to be possible (8).  Determining prognosis in a more holistic sense i.e. physical and psychological and the likelihood that a person would be able to independently maintain a healthy weight is more complex.

Clause 2(2)

 This clause has been refined from that contained in the Leadbeater Bill, which provided that “[A] person who would not otherwise meet the requirements of subsection (1) shall not be considered to meet those requirements solely as a result of voluntarily stopping eating or drinking.”  The clause now reads:

    Where—

(a) a person does not eat or drink, or limits their eating or drinking, either voluntarily or because of a mental disorder, and

(b) their not eating or drinking, or limited eating or drinking, causes them to have an illness or disease,

the person is not regarded for the purposes of this Act as terminally ill by virtue of the illness or disease.

It is helpful that reliance is no longer placed solely on the stopping / limiting of eating and drinking being ‘voluntary.’  This term is fraught because of the highly complex debates that may occur around whether a person is engaging in eating disorder behaviours because of their own choice or irresistible compulsions caused by their mental disorder.

However, the clause cannot achieve its aim of excluding the impact of eating disorders behaviours from the scope of the Bill.  Eating disorders behaviour often involve more than just food. An important example are individuals with Type 1 diabetes and an eating disorder (‘T1DE’). Sufferers may refuse to take their insulin for fear that it will make them put on weight. This leaves them at high risk of diabetic complications and early death. Similarly, people with eating disorders driven by body image fears may be reluctant to take even lifesaving medications e.g. steroids (which can alter metabolism and increase weight) or potassium supplements (which can contain sugar). In these instances, someone with anorexia (for instance) could bring themselves within scope of the Bill notwithstanding the attempt to exclude them by Clause 2(2).

More fundamentally, we note that the drafting of this clause shows the tension between prioritising ‘choice’ and securing tight medical criteria.  A person with anorexia may develop complications such as heart failure, renal failure and liver failure. These conditions, once they develop, could be understood as progressive physical illnesses which fall within the Bill’s definition.  Even if the person with anorexia started eating and drinking again (or stopped limiting and eating drinking), they would thereafter permanently be excluded from accessing assistance under the Bill if (for whatever reason) they felt compelled to seek a hastened death to avoid the consequences of those complications.

Clause 2(3) [not directly relevant]

Clause 2 (4)

For the avoidance of doubt, a person is not to be considered to be terminally ill only because they are a person with a disability or mental disorder (or both).

“Mental disorder” is not defined in the Bill as it stands. However, the Mental Health Act 1983 defines (in section 1(2)) a mental disorder as being “any disorder or disability of the mind,”[2] and we propose including this definition in clause 56 for clarity.

The mental disorder exception in clause 2(4) of the TIA Bill is strained because eating disorders are paradigmatic of disorders which are both profoundly physical and mental.  A psychological state may be a major factor driving eating disorders but predisposing factors and the consequences are often physical. In anorexia, physical predisposing factors include genetic susceptibilities in a person’s microbiota, metabolism, endocrine system, immune system and brain (9).  In Avoidant Restrictive Food Intake Disorder (ARFID) common physical predisposing factors include gastrointestinal disorders such as Inflammatory Bowel Disease (10). Once the body enters a starved state there are risks to multiple organs including heart failure, liver dysfunction and changes in brain structure and function (11-13) When nutritional rehabilitation is possible most of these physical consequences are reversible.  However, this process can be physically challenging and risky due to pain caused by the body resuming digestion and the potentially lethal metabolic chaos of refeeding syndrome (14, 15). There may come a time in relation to a person with anorexia when it cannot be said that they are ‘only’ a person with a mental disorder, such that the exception in clause 2(4) could not hold if clause 2(2) cannot do the work asked of it.

Mental capacity assessment in eating disorders

We address the issues around using the assessment of mental capacity as outlined in the Mental Capacity Act 2005 (MCA) in another briefing. In this document we discuss the particular problems around mental capacity assessment and eating disorders. During the passage of the Leadbeater Bill in the House of Commons, it became clear that there as an assumption on the part of some Parliamentarians that:

  1. People with eating disorders have a mental disorder;
  2. People with a mental disorder lack capacity to make decisions about ending their own life for purpose of the Bill;
  3. Therefore the requirement for a capacity assessment is a safeguard against people with eating disorders accessing assistance in dying.

We suggest that it is important to make clear that this assumption relies upon a logical fallacy and an unsound evidential basis.

The logical fallacy is that having a mental disorder inevitably means that a person lacks capacity to make relevant decisions.  As set out in the briefing on the MCA, it is only if a person has a mental disorder which causes them to be functionally unable to make a decision that they lack capacity.

The evidence is clear that (a): capacity assessment in anorexia is complex; and (b) international practice demonstrates that people with anorexia have been found to have capacity to end their lives within assisted dying frameworks.

 Complexities of assessing mental capacity in those with eating disorders

It needs to be acknowledged that two decisions may be at play when considering assisted dying and eating disorders: the decision to request assistance in dying and the decision to refuse treatment in the form of nutrition and hydration (or other treatments impacting on body weight).

There are significant reasons to doubt a presumption of capacity for both these decisions including:

  • The physical impact of starvation of the brain: the brain alone requires around 500kcal per day to function and chronic starvation leads to a reduction in brain size and connectivity; (16)
  • Cognitive issues: multiple brain functions are impacted by starvation and a person may experience memory problems, cognitive rigidity (17), anxiety, depression, dominance of anorexic cognitions and identity, difficulty relating to others (18);
  • The psychopathology of anorexia: individuals describe experiences where they feel coerced by the ‘anorexic voice’ into valuing thinness above life itself (19);
  • Restrictive eating can also be driven by urges to self-harm, emotional dysregulation and complex interpersonal dynamics (20).

However, people with anorexia are often judged to have the capacity to make relevant decisions, including around accepting nutrition and hydration. Some studies suggest that only one third have what is described as diminished mental capacity (21, 22). The reliability of capacity assessments in individuals with anorexia is low with divergence seen between clinicians (23). The reasons for this include:

  • Levels of lucidity are typically high;
  • It can be difficult to disentangle the authentic self from the disorder (24);
  • Decision making difficulties are specific to decisions around eating (21);
  • Capacity assessments can focus on cognitive reasoning abilities and miss emotional difficulties and underlying beliefs around being unworthy of help (25);
  • Powerful interpersonal dynamics can complicate the assessment process.

A person with anorexia can lack capacity to make a decision about nutrition and hydration, but have capacity to make decisions about all other aspects of their life.  It would therefore be possible for a person to lack capacity to make decisions about nutrition and hydration but to have capacity to decide to end their own life.

International practice around assisted death and eating disorders

A recent (2024) study reviewed all documented instances of assisted death for people with eating disorders. The authors searched academic literature and all publicly available government reports in jurisdictions where assisted dying is legal for people with psychiatric disorders plus the US.  The authors found 60 relevant cases. In over 95% of these cases it was concluded that the individual’s eating disorder was untreatable and all these individuals were assessed to have capacity to end their lives (26). This underscores that the current safeguards around the definition of terminality and capacity assessments may not be sufficient to prevent those with eating disorders from accessing assistance in dying (as per the policy intention).

Conclusions

 We have explained in our overarching briefing why we are not proposing amendments to address the scope of the Bill more generally. For similar reasons, we do not propose amendments to the Bill to address the matters set out above.  Rather, they provide a further reason why an independent review is required.  Any such review will need to consider the potential knock-on consequences of a change in the law on the management and treatment of eating disorders through the ‘messaging’ that law signals. It will also need to consider the trade-offs involved in legislating for assisted dying that the example of eating disorders serves so well to clarify.

Further information

For more detail about any of the matters set out above, please contact lucy.a.stephenson@kcl.ac.uk.

More information about CLADD can be found here.

Alex Ruck Keene maintains a resources page on the TIA Bill here.

References

  1. Stephenson L, Roff C, Kim S. ‘Red herring’or ‘canary in the coal mine’: a thematic analysis of views on eating disorders and assisted dying in the UK parliamentary debate. International Review of Psychiatry. 2026:1–12.
  2. Van Eeden AE, Van Hoeken D, Hoek HW. Incidence, prevalence and mortality of anorexia nervosa and bulimia nervosa. Current opinion in psychiatry. 2021;34(6):515.
  3. Dobrescu SR, Dinkler L, Gillberg C, Råstam M, Gillberg C, Wentz E. Anorexia nervosa: 30-year outcome. The British Journal of Psychiatry. 2020;216(2):97–104.
  4. Treasure J, Claudino AM, Zucker N. Eating disorders. The Lancet. 2010;375(9714):583–93.
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  9. Himmerich H, Bentley J, Kan C, Treasure J. Genetic risk factors for eating disorders: an update and insights into pathophysiology. Therapeutic advances in psychopharmacology. 2019;9:2045125318814734.
  10. Fonseca NK, Curtarelli VD, Bertoletti J, Azevedo K, Cardinal TM, Moreira JD, et al. Avoidant restrictive food intake disorder: recent advances in neurobiology and treatment. Journal of Eating Disorders. 2024;12(1):74.
  11. Mehler PS, Brown C. Anorexia nervosa–medical complications. Journal of eating disorders. 2015;3(1):11.
  12. Rosen E, Sabel AL, Brinton JT, Catanach B, Gaudiani JL, Mehler PS. Liver dysfunction in patients with severe anorexia nervosa. International Journal of Eating Disorders. 2016;49(2):151–8.
  13. Mehler PS, Watters A, Joiner T, Krantz MJ. What accounts for the high mortality of anorexia nervosa? International Journal of Eating Disorders. 2022;55(5):633–6.
  14. Garber AK, Sawyer SM, Golden NH, Guarda AS, Katzman DK, Kohn MR, et al. A systematic review of approaches to refeeding in patients with anorexia nervosa. International Journal of Eating Disorders. 2016;49(3):293–310.
  15. Norris ML, Harrison ME, Isserlin L, Robinson A, Feder S, Sampson M. Gastrointestinal complications associated with anorexia nervosa: A systematic review. International Journal of Eating Disorders. 2016;49(3):216–37.
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  18. Keeler JL, Konyn CY, Treasure J, Cardi V, Himmerich H, Tchanturia K, et al. “Your mind doesn’t have room for anything else”: a qualitative study of perceptions of cognitive functioning during and after recovery from anorexia nervosa. Journal of eating disorders. 2022;10(1):201.
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  22. Elzakkers IF, Danner UN, Grisso T, Hoek HW, van Elburg AA. 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. 2018;58:27–35.
  23. Takimoto Y. Key components of the mental capacity assessment of patients with anorexia nervosa: a study of three countries. Journal of Eating Disorders. 2022;10(1):110.
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[1] CLADD is a King’s College London based group with expertise in psychiatry, palliative care, bioethics, public policy and law.  We are neutral as to whether assisted dying / assisted suicide should be made law.  We are committed to the principle that it is for Parliament to decide.  We are equally committed, however, to the principle that any law that is passed must function as a workable framework which protects the interests of patients, professionals and wider society.

[2] Section 1 of the Mental Health Act 1983 will be amended in due course by the changes included in the Mental Health Act 2025, but the definition of “mental disorder” will remain the same.

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