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 nonnegotiable 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 Grisso 4
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
P.S.Appelbaum, T.Grisso, Assessing patients’ capacities to consent to treatment, (1988). 319, New
England Journal of Medicine, 1635–1638.
5 Ibid.
4
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 literature 7 and it closely reflects the
common law criteria for capacity.8 In 2006 Tan and her colleagues used the MacCAT-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
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.
9
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
15
J. Tan, at 12.
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
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.
9
values of the person being coerced.”18 When autonomy is somehow compromised,
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 decisionmaking.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
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.
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
active decision. In other words, imposing treatment shifts the burden of responsibility
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
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.
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.
27
11
patients who were hospitalized against their will and those that were keen to be
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
29
Ibid.
Beaumont, at 4.
31 Ibid.
30
12
6. Why involuntary treatment is not the best solution. The quality of life
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
13
summarized in a question: why is patient diagnosed with anorexia nervosa permitted
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
14
compulsory treatment argue that there is no logical reason why a patient diagnosed
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