Alessandra Gai

Anorexia nervosa and the refusal of treatment

Introduction

Anorexia nervosa is an eating disorder that revolves around the difficulty of the

patient to gain weight and to cooperate with the medical treatments. Matter of fact, in

many cases the patient needs to be cured with compulsory feeding in order to avoid

the risk of death.

The moral, clinical and legal issues that arise from this scenario regard the possibility

for the patient to ask for the withdrawal of treatment and the capacity and

competence to understand and consent to it. In fact, weight restoration is a non-

negotiable aspect of treatment. Is the patient making an autonomous decision or is it

dimed by the characteristic of the illness itself, which makes the patient believe that

the act of ingesting food is intrinsically wrong?

What should health care professionals do in relation to the duty of care that they owe

to their patients?

The difficulties in dealing with these questions are emphasized on one hand by the

nature of the illness itself. A it will be explained, Anorexia nervosa detains the highest

rate of mortality among the “psychological” conditions and it still remains one of the

least tractable conditions1. On the other hand it is hard to tackle the problem due to

the scarcity of sources (i.e. surveys, tests, trials) that allows highlighting long or

short-term findings in compulsory treatment versus voluntary treatment.

After briefly explain the terms of the problem, this paper will focus on the dilemma of

understanding competence and consent to treatment and the role of the health

professionals in the decision making process. The analysis will explore different

approaches taken by the courts, and opposite views on the topic. It will be argued

that a refusal of compulsory treatment should be taken into consideration and that

involuntary treatment does not serve the purpose of cooperate with the patient to

make his or her life worth of living according to the patient’s will. The analysis will

1 T. Carney, Anorexia: A role for law in therapy?, (2010), 10, 5, Legal studies Research paper, The University of Sydney, 2.

1

conclude with a call for the necessity to provide palliative care to those patients who

require ceasing treatment and ending their life in peace.

1. Anorexia Nervosa. Understanding the problem

Anorexia Nervosa (AN) is an eating disorder characterized by a distorted body image

that makes the patient believe his or her body as extremely fat and overweight, while

in reality the BMI (body mass index) is significantly below the standards of a healthy

body. The fear of gaining weight results in extreme diets and starvation.

It is therefore classified as a psychological illness under the Diagnostic and Statistical

Manual of Mental Health Disorders (DSM V) published by the American Psychiatric

Association.2

The DSM contains a set of diagnostic criteria for mental health disorders. According

to it, to be diagnosed with having Anorexia Nervosa, a person must display:

Persistent restriction of energy intake leading to significantly low body weight

(in context of what is minimally expected for age, sex, developmental

trajectory, and physical health).

Either an intense fear of gaining weight or of becoming fat, or persistent

behaviour that interferes with weight gain (even though significantly low

weight).

Disturbance in the way one’s body weight or shape is experienced, undue

influence of body shape and weight on self-evaluation, or persistent lack of

recognition of the seriousness of the current low body weight.

Anorexia nervosa is considered to be a very difficult illness to treat, because it

involves both the cure of the psychiatric and physical sphere. The obsession for the

body image is usually connected to mood fluctuations, irritability, social withdrawal,

loss of sexual libido, drastic swings from a strive to perfectionism to very poor

concentration.

2 American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders: DSM-5. Washington, D.C: American Psychiatric Association.

2

The treatment of anorexia therefore requires the health professionals to work on the

weight restoration but also on the mental attitude of the patient toward the illness.

One of the characteristics of anorexia, in fact, is its ego-syntonic nature, which results

in ambivalence toward treatment and refusal of it. Most of the patients are able to

recognize that there is something wrong in their behaviour, which will lead to major

health complications, but the expressed desire to change is usually not followed by

real attempts.3 Confronted by the medical practitioners, anorexic patients would

usually show a strong motivation in getting help, but the real goal of this is to obtain

temporary relief from the consequences of their illness, such as being in hospital

surrounded by doctors, feeling the pressure from medical staff and family, being

monitored closely.

The problem arises when an anorexic patient refuses treatment or asks to suspend it.

Is it reasonable to comply with his or her wish knowing that it comes from a person

with a mental disorder?

It is important to keep in mind how there have been few empirical studies examining

either competence or capacity or treatment decision-making ability in general in

patients diagnosed with anorexia nervosa. This lack of thorough researches affects

the general understanding of the topic and generates much debate around it.

2. The issue of competence

The crucial issue in treating Anorexia Nervosa is the issue of competence.

It is first of all important to understand if there are valid criteria that can be used to

assess competence in anorexic patients and if so, which. Once defined the frame of

the canvas of competence we need to understand the interplay of the main elements

of the illness, such as the aspect of control and the desire towards a state of “health”

so close to death.

The vast majority of patients with anorexia are able to carry on their lives and make

decisions just like any other person without that disease. Matter of fact, their ability to

3 A. Guarda. Treatment of anorexia nervosa: Insight and obstacles, (2008), 74, Physiology & Behaviour, 113-120.

3

judge and make choices becomes clouded only (or at least mainly) regarding the

eating behaviours that they have. In discussing treatment options, the anorexic is

usually in a position to receive and understand the information given. Is he or she

therefore competent to refuse treatment? If not, how should health professionals

behave?

In trying to answer these questions the first step to be taken is understand what is

competence and what criteria should be used to assess it.

2.1. The MacArthur Competence Assessment Tool

In the recent years a tool to assess competence has been widely used in the field of

mental disorders, the MacArthur Competence Assessment. Appelbaum and Grisso4

enumerated four criteria for assessing competence:

The person must be able to understand and communicate the choices

available;

The person must understand the information relevant to making the decision;

The person must appreciate the situation and the consequences of her

consent or refusal to treatment; and

The person must demonstrate during the process that she can manipulate

information rationally.

According to Appelbaum and Grisso:5

[T]he assessment of competency to consent to or to refuse treatment appears to

require among other elements a consideration of the accuracy of the patient’s

‘appreciation’ of the nature of his or her situation.

The appreciation criterion implies that not only the patients understand the facts and

the consequences of the situation, but also they are able to recognize that the facts

4 P.S.Appelbaum, T.Grisso, Assessing patients’ capacities to consent to treatment, (1988). 319, New England Journal of Medicine, 1635–1638.5 Ibid.

4

apply to their specific case. Appelbaum and Grisso provide three criteria in order to

judge a failure of the test.6

a) First, the patient’s belief must be substantially irrational, unrealistic or a

considerable distortion of reality.

b) Second, the belief must be the consequence of impaired cognition or affect.

c) Third, the belief must be relevant to the treatment decision.

Applying these criteria to an anorexic it could be said that the patient has a belief (he

or she is fat) that causes a distortion of reality; this belief is caused by impaired

cognition (anorexia nervosa) and it is relevant in the decision to refuse treatment that

would surely imply gaining some weight.

Is it enough to consider a person incompetent? When can we say that a belief is a

distortion of reality instead of a value?

In assessing competence, refusal of treatment should be taken into consideration

especially when chronic patients are involved. There is a difference in the type of

refusal from a 16 years old girl at her first hospitalization and a person who refuses

treatments after 20 or 30 years of struggle against anorexia and multiple

hospitalizations. They both suffer from anorexia but there is a higher chance that the

second patient has gained insight of her illness during the years that would enable

her to better understand pros and cons of refusing a treatment.

2.2. The role of values and emotions in competence

The assessment tool elaborated by Appelbaum and Grisso has been accepted as a

“gold standard” of competence in psychiatric literature7 and it closely reflects the

common law criteria for capacity.8 In 2006 Tan and her colleagues used the Mac-

CAT-T the first time to assess competence to make treatment decisions (acceptance

6 J. Tan et al, Control and compulsory treatment in anorexia nervosa. The views of patients and parents, (2003), 26, International Journal of Law and Psychiatry, 632.7 Ibid. 8 ibid.

5

or refusal) in patients with anorexia nervosa.9 Since, as shown, the Mac-CAT-T does

not consider values, semi-structured interviews were used in order to explore further

aspects of the issues raised by the participants.

The results from the test of competence point out that all participants with anorexia

nervosa scored well, showing excellent understanding, reasoning and ability to

express choice.10

On the other hand, the answers given to the semi-structured interviews show that

anorexia nervosa can have complex and variable affects on concentration, beliefs

and thought processing without affecting the ability to perform well on the

standardized test. The two main areas of interest pointed out during the interviews

where a) difficulty in thinking; and b) changes in values. The participants expressed a

general struggle in keeping a high level of concentration for a long time as well as

processing thoughts and thinking clearly and logically. A specific area of difficulty was

perceived in applying belief to self-salient belief. Many participants found a

discrepancy between their objective knowledge and understanding of the situation

and the perception of themselves and their bodies, making the factual belief hard to

apply to their cases. As Tan notices, this difficulty in application of factual belief to the

self was not a pure cognitive deficit but the result of an interplay of perceptions and

intellectual understanding.11

The second striking theme that emerged from the interviews was the change of

values in life after developing anorexia. In general terms, being fat was perceived as

being highly undesirable and indicative of laziness, lack of self-care or self-control

and therefore disgusting. Some of the participants, considering themselves fat,

viewed their life as a failure and not worthy of being loved. In a scale of values of a

non-anorexic patient it is very likely that fat does not detain the pole position, whether

being fat for the participants was a state to be avoided at all costs. Interestingly

enough, most of the participants were able to understand how some people can be

9 J. Vollmann, ‘But I don’t feel like it’: Values and Emotions in the assessment of competence in patients with anorexia nervosa, (2007), The Johns Hopkins University Press, 1.10 J. Tan et al, Competence to refuse treatment in anorexia nervosa, (2003), 26, 6, International Journal Law Psychiatry, 702.11 Ibid.

6

large framed and legitimately over the normal weight range, but the rules were

different when applied to themselves.

The findings of the study suggest that competence to understand and refuse

treatment cannot be assessed using only the MacCAT-T scores, because the test is

not able to capture the shift in thought process and the change of values that are

inevitably part of the patient’s world. The data collected by Tan and her colleagues

are pivotal in understanding how complex is the issue of competence in anorexic

patient. It shows how anorexia can affect the decision making process, altering the

values and the personal beliefs but resulting adequate enough to pass the 4 stages

of the competence test.

2.3. The issue of control and personal identity

Another aspect of the illness that makes choices regarding treatment so hard is the

role of control exercised by the patient.12 Being able to meticulously control the food

intake, count calories and knowing the exact number on the scale is a big part of the

classical behaviour of anorexic patients. Often the need to control something is the

primary cause of falling into anorexia. The body becomes the battleground to gain

control over the patient’s own life.

As Surgenor puts it:

Controlling the body becomes a means by which the mind attempts to regain

control of self. The perceived loss of control is not with external factors, but

derives from feared or real loss of control of self. It is self-directed and internally

sited. Extrapolating from this model, internal locus of control is the site of action,

and action takes place between competing sources (mind, body) of internality.13

Trying to provide treatment to a patient means taking this kind of control from him or

her, leaving the patient with little choice over the diet to follow, the possibility to

exercise and so on. This may worsen the feeling of impotence of the anorexic,

12 L. Surgenor et al, Anorexia Nervosa and Psychological Control: A re-examination of selected theoretical accounts, (2002), 10, European Eating Disorders Review, 85-101.13 Ibid.

7

resulting in an even stronger rejection of help and treatment. How can doctors

assess whether the refusal of treatment is an act of self determination or just a way

to not loose control?

In a study conducted by Tan and her colleagues,14 control emerged as a core feature

of anorexia. The researchers interviewed 10 young women aged 13-21 diagnosed

with anorexia and all of them referred to the struggle of keeping control over their

lives. What seems to be surprising is that most of them pointed out how, in striving to

be in control of themselves and their situations, they were in turn controlled by their

disorder. As one of the patient stated: “It’s a very confusing illness, because at the

moment it’s probably got a lot of control over me, […] but then it kind of protects you

as well, I think, from coping with other things”. 15

The issue of control is indeed deeply linked with the view that many anorexic have

about the illness as being part of their identity. It is not uncommon to hear patients

refer to eating disorders as persons (“Ana” for Anorexia, “Mia” for Bulimia), pieces of

identities that cohabitate in the patient’s mind. Treating the disease would mean

loosing that part of identity that makes them who they are.

In the study conducted by Tan it emerged that for many participants it was very hard

to imagine their lifestyle without anorexia, because the illness implied a set of rigid

behaviours and values that shaped their personality to the point of not being able to

know what they would be like if they did not have anorexia.

2.4. The attitude toward death and disability

In assessing competence and ability to refuse treatment it is important to understand

if patients perceive the possibility to die as a real threat or, in the line of the

appreciation argument, merely as a consequence of the illness that would not apply

to them. In other words, the choice to withdraw from treatment has to come from a

sound desire to die and not as a mere consequence, a “side effect” of being thinner

and thinner.

From the findings in the research cited above, participants described alterations in 14 J. Tan, at 12.15 Ibid.

8

the way they perceived death. Some of them were able to recognize that restraining

from eating would eventually lead to death but being thin was more important to die.

Matter of fact many of them pointed out a desire to die at some point of their lives.

Some other patients, while recognizing a risk of death associated with their strong

desire of starvation, stated that their aim was to be thin and not to die itself.

3. Clash of principles

From all what said above it seems clear that there is no such thing as a uniform and

reliable test of competence that can be adopted in trying to decide whether a

treatment can be lawfully refused or not.

From a general point of view refusal of treatment from a competent person must be

respected even in life-threatening situations. Every human being has jurisdiction over

his or her body and none can override this right. This is an expression of the principle

of autonomy, which grants individuals the right to make informed choices about

treatment without coercion or undue influence. This often implies the respect for

other’s autonomous decisions despite believing that the choice is wrong or harmful. 16

As Freedman argues, the autonomous person is entitled to be foolish in his

decision.17 People that lack of competence, on the other hand, are not able to

provide an informed consent, therefore they can’t be regarded as having a full

autonomy. As highlighted before, the assessment of competence in patients with

anorexia nervosa in very complex and there are no clear cut-out criteria. What should

health professionals do when faced with the dilemma of giving treatment to someone

that refuses it, or suspend an on going therapy/treatment?

Historically the antagonist of autonomy in traditional medicine has always been

paternalism. Paternalism is “the interference with a person’s liberty of action justified

by reasons referring exclusively to the welfare, good, happiness, needs, interests or

values of the person being coerced.”18 When autonomy is somehow compromised,

16 J. Matusek, M. Wright, Ethical dilemmas in treating clients with eating disorders: a review and application of an integrative ethical decision making model, (2010), 18, European Eating disorders review, 434-452.17 Ibid.18 D.H.J. Hermann, Autonomy, self determination, the right of involuntarily committed persons to refuse treatment and the use of substituted judgment in medication decisions involving incompetent persons, (1990), 12, International Journal of Law and Psychiatry, 374.

9

the decision making process is made by reference to the “best interest” of the patient.

Using a paternalistic approach, the best interest would be decided by the doctors, in

the track of a principle of beneficence (doing good for others by promoting health and

welfare) and non-maleficence (above all do no harm).

Related to benefice and non-maleficence, the principle of justice is defined as a

general need for fairness. In the field of eating disorder it has been read as providing

the least restrictive intervention for a given clinical circumstance.19

The solid stone of paternalism, which suggest that the doctors “know best”, has been

challenged by a new model of decision-making, the participatory shared decision-

making.20 This model would combine the need of doctors to fulfil the duty of care and

the enhanced consideration for the patient’s will. As Matusek points out, the risk of

this joint approach include potential struggles that could result in an effective

therapeutic alliance.21

4. Arguments in favour of involuntary treatment

The reasons for believing that involuntary treatment is justified in relation to anorexia

nervosa are various and classifiable under the “paternalistic” approach; some authors

argue that the rate of mortality in anorexia nervosa is too high to let patients “run the

risk” of becoming part of the statistic when it could be otherwise avoided.22 Werth,

advocating for a duty to protect, points out that compulsory treatment and monitoring

patients is necessary to show them a healthier path to follow and to break bad eating

habits.23

In 1994, Goldner highlighted how involuntary treatment could have a positive impact

on the psychological process of the anorexic patients, in the sense of relieving them

from feeling defeated ad guilty for eating and gaining weight, since this is not their

active decision. In other words, imposing treatment shifts the burden of responsibility

19I. Fedyszyn,G.B. Sullivan, 'Ethical re-evaluation of contemporary treatments for anorexia nervosa: Is an aspirationalstance possible in practice?', (2007), 42,3, Australian Psychologist, 198 – 211.20 Ibid.21 J. Matusek, at 24.22 J. Matusek, at 24.23 Ibid.

10

and blame from the patient to the medical staff or those who decided for it.24

The most stated reason, however, lies in the fact that “the effect of starvation distorts

an anorexic patient’s ability to make treatment decisions”.25

For those who believe that the anorexic have an impaired decision making ability

regarding food treatment, “the justification for interfering with the anorexic behaviour,

particularly when death is imminent, is precisely cause the behaviour does not result

from free choice and is likely to result in an outcome that is contrary to the real desire

of the patient”.26

Some authors have tried to solve the problem of compulsory treatment concentrating

on other aspect of the illness rather than competence. Simona Giordano argues27

that in deciding whether compulsory treatment should be given, competence is not

the primary element to consider. She explains that overriding a patient’s refusal to

treatment can be legitimate when his or her recovery is permissible. On the other

hand when a patient has no realistic chance of recovery the refusal must be upheld.

Even though open to the possibility of accepting a refusal of treatment, this position

seems to reflect a paternalistic view of the role of medicine.

5. Arguments against involuntary treatment

As noted above, the advocates for compulsory treatment justify it arguing that the

gratitude of the patient would speak for the invasive treatment. This argument

assumes incompetence of the patient without questioning the grey areas that are

inevitably present in anorexia.

As Silber recalls, very few data are available regarding the effects of treating patients

against their will. From a study conducted by Ramsay et al,28 a comparison between

patients who were hospitalized against their will and those that were keen to be

24 E.M. Goldner, C.L. Birmingham, Anorexia nervosa: methods of treatment. (1994), L. Alexander-Mott and D.R. Lumsden (eds), Understanding eating disorders: Anorexia nervosa, bulimia nervosa, and obesity. Taylor and Francis, 135-157.25 R. Dresser, Feeding the hunger artists, Legal Issues in treating anorexia nervosa. (1984), 2,

Wisconsin Law Review, 367.26 N. Fost, Food for thought: Dresser on anorexia, (1984), 2, Wisconsin Law Review, 375.27 S. Giordano, Anorexia nervosa and refusal of nano-gastric treatment: a response to heather draper, (2003), 17, 3, Bioethics, 262.28 J. Tan, at. 12.

11

hospitalized shows that there were no differences in short-term weight recovery.

In the interviews conducted by Tan and al, most participants expressed a general

disagreement in the use of compulsory treatment. The main reason was that

involuntary treatment was not effective for more than short-term weight gain and had

no effect on a psychological level to help the patient. They believed that involuntary

treatment was justified if, and only if, there was a serious risk of death. 29 When asked

what would compulsory treatment feel like, the patients and even the parents replied

that it was viewed as “inflicting suffering, prison, punishment”, and generally as a

negative experience.

In a panel on compulsory treatment of an anorexic woman, Beaumont argues against

the common pitfall that treating a patient against her wishes will help in any case:

If one is going to enforce treatment, one must be reasonable confident that the

treatment is going to bring about some beneficial effect. […] However, if it were

only a case of forcing this women to receive treatment of her anorexia nervosa,

that is nonsensical. To admit her to hospital is not to persuade her to undergo

treatment: to undergo treatment she has to cooperate. She has been in hospital

on several occasions but never once she really cooperated. I think that we are

unable to treat her, so that we cannot make the claim that we are going to force

her into treatment. It is not possible unless we obtain her cooperation.30

An interesting point is raised by Ruther: scrutiny of competence is rare when a

patient assents, even if the patient is not fully competent. Competence is typically

questioned only when a patient wants to make a decision that is different from the

one suggested by his or her medical staff. This reflects the common medical practice

approach, where refusing medical advice might resort in a question of competence

assuming that the doctor is right about what is in the patients best interest.31

6. Why involuntary treatment is not the best solution. The quality of life

29 Ibid.30 Beaumont, at 4.31 Ibid.

12

In an ideal situation, the assessment of competence of the anorexic patient should

always be made before deciding for or against compulsory treatment. In the absence

or uncertainty of that, having taken into consideration all possible evidence that show

a clear unsound mind, I believe that when a patient strongly refuses treatment it is

likely that forcing him or her to undergo it, would not result in a overall satisfactory

result. We need to ask ourselves what is exactly the outcome that compulsory

treatment wishes to achieve. It seems quite obvious that the prime goal is to make

the patient healthier, in other words to prolong the patient’s life. The hope is to give

the patient’s a “second chance” to re-evaluate his or her life after reaching a better

place, in which life is not so unbearable. But is this a fair justification? My claim is

that it is not always true.

Imposing treatment without the active cooperation of the patient might result in a

longer life; but is it a better life? Forcing treatment is not curative (Birmingham 2005).

We assume that recovery means living a normal, balanced life. This might not be true

all the time. Many ex-anorexic say that a full recovery from anorexia is almost

impossible. The body and the mind will always carry the scars of the previous

experience. Some patients compare the recovery from anorexia to the recovery from

alcoholism. They learn to live with it, doing the best and hoping not to fall in the habit

again, but there is a form of chronicity of the illness, in the sense that the (ex) patient

will never think about his or her body and food the way a person without anorexia

would do. On the other hand, if the illness has been there for many years the body

could not be able to fully recover, even when psychologically the situation had been

overcome.

Sometimes the decision of refusing treatment can have little to do with food intake

per se, but it could be based on a personal assessment of the quality of life by the

patient.

7. Discussion of critics

The main critic that could be moved to my view of compulsory care is well

summarized in a question: why is patient diagnosed with anorexia nervosa permitted

13

to starve to death while patients diagnosed with schizophrenia are protected from self

inflicted harm?

People might argue that there is no reasonable ground to respect withdrawal of

treatment for patients with anorexia, while imposing treatment to people with other

mental illnesses such as schizophrenia.

I believe that the discrepancy of attitude towards treatment lies in the fact that in the

specific case of anorexia, the main treatment (food) is also the biggest fear of the

patient, what triggers the anxiety state of mind of the anorexic, and the one thing that

cannot be replaced with some other form of therapy. This mental illness affects the

body in ways in which other mental illness do not. If it was possible to keep an

anorexic with a BMI of 11 without risks for her health and just to focus on treating the

mental illness with psychotherapy, counselling etc then food treatment would be

unnecessary and the overall success of the treatments might increase. Unfortunately

this is not possible.

I will try to draw a comparison. Some believe that people with body dysmorphic

disorder should be prevented from inflicting what they believe is a “harm” to the body

because this desire comes from a mentally instable person. I believe that if the

person affected with BDD wanted to undergo major surgeries to change his or her

unwanted physical appearance, their decision should be taken into serious

consideration even though it goes against the typical sense of what life should be like

for the majority of the community. It is important to remember not to be too

oppressive in our assessment of other’s people values, just because they deviate

from the norm.

Conclusions

Deciding over someone else’s life is always a hard task. Anorexia nervosa is

considered to be a “hard case” in mental health. The forcing of the treatment lies

mostly on the belief that the patient is incompetent, therefore his or her will cannot be

taken into consideration as much as the one of a competent adult. Advocates for

compulsory treatment argue that there is no logical reason why a patient diagnosed

14

with Anorexia should be permitted to starve to death while patients with other mental

illnesses are protected from inflicting harm to themselves. This view implies that

anorexic patients are never able to make a competent decision, therefore their best

interest have to be assessed by a doctor. It follows that in a balance between

overriding the wishes of the patients and allowing death, involuntary treatment is

considered as the “least restrictive” procedure. Since the illness compromise

undoubtedly the ability of the patient to make a rational decision, involuntary

treatment is permissible.

This argument is embedded with paternalism and reflects the belief that life should

always be preserved as it has its own sanctity, no matter what kind of conditions it

applies to.

The point of my analysis was to first of all show how the concept competence in

anorexia nervosa is a grey area and the criteria to assess it are still not defined as a

clear category. The consequence of this is that there can be cases in which a patient

is perfectly able to make a competent decision that is overridden by the doctors

based on false premises. This is known as a breach of autonomy, which is never

desirable. My claim is that if compulsory treatment might be acceptable in life

threatening situations as a means to restore a healthier state of mind and body, it is

not desirable as a general rule. Other factors might as well be the pivotal triggers for

a decision to cease treatment, such as a personal and subjective assessment of

what quality of life is.

15