Anorexia nervosa. A case for exceptionalism in ethical decision-making

ABSTRACT

Background and purpose

Coercive treatment for anorexia nervosa raises acute ethical, legal and clinical

issues: it is sometimes the only way to prevent death, but it represents a

serious form of bodily intrusion and a violation of the stated wishes of patients

who are often intelligent and well articulated. The purpose of this paper is to

clarify the philosophical and ethical issues involved in the treatment of

anorexia nervosa and to propose applicable principles of ethical decision-

making.

Research methods and ethical issues: Anorexia nervosa raises acute

ethical issues: can it ever be ethical to impose treatment despite sufferers’

apparently intact intellectual capacity? In cases of severe and enduring

anorexia, where patients appear recalcitrant to therapy and where the

condition is life-threatening, can it ever be ethical to discontinue life-saving

treatment? This paper discusses cases that appeared before the courts of

England and Wales in the period 2012-16. It offers a philosophical analysis of

the notions and concepts used (particularly capacity, best interests and

futility), and evaluates the ethical principles underpinning these decisions

through the classical methods of philosophical investigation.

Conclusions: the usual principles of ethical decision-making (respect for

autonomy, respect for capacitous refusals, discontinuation of futile treatment)

are not straightforwardly applicable to the treatment of anorexia nervosa. The

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exceptional circumstances which characterise anorexia nervosa provide moral

reasons for partial derogation from the usual principles of ethical decision-

making. Alternative principles of ethical decision-making are proposed. It will

be suggested that coercive treatment in late stage patients can be justified,

but in a limited number of circumstances and when there is concrete

possibility of recovery and significant improvement of the quality of life of the

sufferer. Early paternalistic intervention may be more justifiable, ethically, than

later coercive intervention.

Key words: anorexia; capacity; futility; best interests; ethical decision-making

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Anorexia nervosa. A case for exceptionalism in ethical decision-making

Introduction

The principles that usually direct ethical decision-making (respect for

autonomy, respect for capacitous refusals of treatment, discontinuation of

futile treatment) are not easily or straightforwardly applicable to the care and

treatment of anorexia nervosa, particularly the care and treatment of severe

and enduring anorexia nervosa, where the sufferer appears recalcitrant to

treatment and where the condition has become life-threatening.

There are exceptional circumstances which characterize this puzzling and still

scarcely understood condition; I will suggest that these exceptional

circumstances provide moral reasons for partial derogation from the usual

principles of ethical decision-making.

In what follows I argue first (and against common judicial opinion) that the

arguments used to suggest that anorexia patients lack capacity, and that

therefore the decisions should be made in their best interests, are flawed or

incomplete.

It might then seem that I would be committed to honoring all treatment

refusals from anorexic patients. But I argue that we ought to admit in the

special case of anorexia that paternalistic intervention with capacitous

patients is sometimes morally justified. I maintain that we need to be clearer

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about best interests and not simply assume that coercive treatment (forced

feeding) is always beneficial. In many cases it may not. Therefore, I also

argue, in the final section, that coercive intervention is much more likely to be

justified in cases of early stage anorexia. 

A number of cases involving patients with severe and enduring

anorexia nervosa that have appeared before the courts of England and Wales

in the years 2012-2016 provide an illustration of the problem of applicability of

the usual principles to the care and treatment of anorexia. I will not offer a

jurisprudential analysis of these cases (this has been offered already in the

literature) (Clough, 2016), but will discuss some of the conceptual and ethical

issues that emerge in these cases, and will offer some suggestions on what

principles may guide decision-making in the treatment of anorexia nervosa.

Therefore I will not comment on whether the decisions were legally defensible

or coherent with previous cases or with existing statutes.

This paper will begin with a brief summary of these legal cases. Two

aspects are particularly noteworthy. The first is that the patients involved are

invariably said to lack capacity to make decisions about medical treatment for

their anorexia; the second is that when treatment is discontinued, it is not

discontinued, at least primarily, out of respect for their stated wishes, but

because the treatment is said to be futile or not in the patient’s best interests.

This may appear logical, as the normal principles of ethical decision-making

(enshrined in English law) require that capacitous refusals of medical

treatment be respected, and that where patients lack capacity to make

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decisions on their medical treatment, these decisions be made on their behalf

in their best interests.

However, the line of reasoning used to argue that patients lack

capacity is questionable; moreover, the arguments used in the courts raise

important conceptual and ethical issues relating to the notion of futility,

particularly as it applies to anorexia nervosa (note that I will use the feminine

pronoun as anorexia still mainly afflicts women) (Nagl, 2016).

Anorexia in the courts of England and Wales: exceptional decisions?

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In the years 2012-2016 a few notable cases of severe and enduring

anorexia nervosa appeared before the English courts (Keene et al). The

first in 2012 concerned a woman referred to as ‘Ms L’ (The NHS Trust v L

& Others [2012] EWHC 2741 (COP)). In this case the NHS Trust sought a

declaration that further forced treatment could be lawfully withheld, even if it

was understood that L would die as a result. Mrs Justice Eleanor King

considered the “effect of anorexia nervosa on capacity” and deliberated that

Ms L’s judgment was “critically impaired by a profound and illogical fear of

weight gain” ([2012] EWHC 2741 (COP) at [53]). The illness, the expert

explained, causes a deficit in capacity specific to issues relating to food and

weight gain ([2012] EWHC 2741 (COP) at [54]).  However, further attempts to

force-feed were held to be fatal, carrying close to 100% risk of mortality,

because of her extremely low BMI (7.7). Discontinuation of treatment was

thus authorized.

The second case that same year concerned a woman referred to as ‘E’

(A Local Authority v E & Others [2012] EWHC 1639 (COP)). Ms E was 32

years old at the time. She had not eaten any solid food for over a year and her

BMI was critically low (11.3). She had been detained compulsorily under the

MHA around 10 times in the past 6 years. The team, E and her parents

unanimously agreed that all treatment options had been exhausted and that it

was in E’s best interests to die in comfort under a palliative care regime. The

parents said:

It upsets us greatly to advocate for our daughter’s right to die…We

feel that she has suffered enough… We would plead for E to have

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some control over what would be the last phase of her life,

something she has been denied for many years…We want her to

be able to die with dignity in safe, warm surroundings with those

that love her (para 80).

The Judge, Mr Justice Peter Jackson, held that E lacked capacity to

make decisions relating to her eating disorders, notwithstanding her ability to

understand, retain the relevant information and communicate her decision.

The Judge contended that she lacked capacity because of her obsessive fear

of gaining weight. He also argued that her incapacity partly derived from her

physical weakness and from the sedation received as a part of her end of life

care pathway ([2010] EWHC 1639 (COP) at 50). Because E was estimated to

have a 20% chance of recovery following further force-feeding, the judge

concluded that it was in E’s best interests to be fed, by force if necessary.

The third case occurred two years later, and concerned a woman

referred to as ‘Ms X’, who suffered from anorexia nervosa and alcohol

dependency syndrome (An NHS Foundation Trust v Ms X [2014] EWCOP

35). The NHS sought a declaration that they could lawfully discontinue

compulsory detention and treatment as further compulsory treatment for her

anorexia appeared counterproductive. The Judge, Mr Justice Cobb, held that

Ms X lacked capacity to make decisions about eating disorders, but retained

capacity to make decisions about alcohol dependency, and authorized

discontinuation of compulsory treatment.

Another case concerned a woman referred to as ‘W’, who had spent

around 10 of the previous 17 years in inpatient units; she was also found to

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lack capacity to make decisions about treatment for her eating disorders, but

was discharged from hospital into the community as this was deemed to be in

her best interests ([2016] EWCOP 13).

The final case appeared before the courts in 2016, and involved the

woman identified as ‘Z’ (Cheshire & Wirral Partnership NHS Foundation

Trust v Z [2016] EWCOP 56). She was held not to have capacity to make

decisions as to whether to continue treatment for her anorexia. Also in this

case further compulsory treatment was considered too dangerous; feeding

under physical restraint, it was believed, could in itself have killed the patient;

and chemical restraint in the form of sedation was likely to cause respiratory

or cardiac arrest. So any further attempt to force-feed Z was likely to kill her.

The judge therefore approved the plan to discharge her from the framework of

the Mental Health Act 1983 (‘MHA’) (at the end of this paper, I will suggest

whether the decisions in all these cases where morally justifiable or not).

These cases represent an important departure from previous cases; in

previous cases presented to the courts of England and Wales the question

was whether non-consensual treatment could be authorized (not whether it

could be discontinued); and the judged had always ruled in favor of

preservation of life (See for example Re W (a minor) (medical treatment

court’s jurisdiction) [1993] Fam 64 at 81; Re C (a minor) (detention for medical

treatment) [1997] 2 FLR 180 (Fam Div)). However, coherently with previous

decisions, in all these cases, patients are declared to lack capacity to make

decisions about their eating disorder. Where discontinuation of forced

treatment is authorized, it is because it appears either futile, or hazardous, or

otherwise not in the patient’s best interests.

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As mentioned in the introduction, this line of reasoning appears logical

and seems coherent with principles of ethical-decision making enshrined in

English law. When patients have capacity to make decisions about a specific

treatment, they have an absolute right to refuse it (unless it is treatment

lawfully authorized under s.63 of the MHA, and some of these cases indeed

concerned women treated under the MHA framework). When patients lack

capacity, treatment decisions should be made in their best interests: if the

treatment in question is considered to serve the patient’s best interests, it can

be provided even if the patient refuses it; the treatment instead can be (or

should be) discontinued or withheld if it is deemed futile or otherwise not in

the patient’s best interests.

These usual principles of ethical decision-making cannot be applied

straightforwardly to cases of anorexia nervosa. One problem concerns the

determination of capacity and the reasons given to state that anorexics in

these cases lack capacity. Most if not all of the arguments used are either

logically flawed or incomplete for reasons given below. The second problem

concerning the determination of capacity is that in all these cases the alleged

inability to recover from anorexia (to abandon the thinning strategy, or to eat)

is equated to the incapacity to refuse medical treatment. The two mental

processes that lead a patient to refuse food and to refuse medical treatment

for anorexia, however, are not necessarily one and the same, and incapacity

to refuse medical treatment can neither be equated to nor be inferred from

alleged incapacity to accept to eat. The third problem concerns the

determination of the patient’s best interests and, related to this, the imperative

that doctors have to discontinue futile treatment. Both the determination of

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best interests and the notion of futility in cases of severe and enduring

anorexia are particularly problematic, as we are going to see later in the

paper. Hence a case of exceptionalism can be made with regard to the care

and treatment of anorexia nervosa.

In the next section I will focus on the problems relating to the

arguments about incapacity, and later in the paper on the problems relating to

the decision to discontinue treatment for severe and enduring anorexia.

Why patients with severe and enduring anorexia are said to lack

capacity

There are many arguments found in the literature to suggest that patients with

anorexia lack decisional capacity (one for example suggests that anorexia is a

form of substance-related disorder; another says that anorexia is a genetic

condition; another says that anorexics are not capacitous because they suffer

from distortions in body-image perception. I have addressed these in

Giordano, 2005 and 2010). I will focus on those that recur in the cases

discussed earlier.

Incapacity argument 1 (I-1)

I-1: The patient with severe and enduring anorexia nervosa has impaired

cognitive abilities due to starvation

In the case of E, we have seen above that the judge said that E’s incapacity

partly derived from her physical weakness and from the sedation received as

a part of her end of life care pathway ([2012] EWHC 1639 (COP) at 50). This

argument appears indisputable, but the normative implications that are made

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to follow, namely that treatment can then ethically be decided by others on her

behalf, are not.

This is so because starvation does not occur suddenly. Even if the

person is incapable of refusing treatment at the point in which starvation is

impairing her cognitive abilities, the person may have been able to refuse food

(and treatment) up to that point.

In cases of life-prolonging treatment, if we refuse treatment, there is a

point at which we lose capacity, because we will be dying. If I-1 were to be

accepted, the consequence would be that the patient is admitted to hospital,

re-fed because incapacitated, discharged when a certain body weight has

been achieved, re-fed again when the thinness is thought to impair upon her

cognitive abilities and so on.

Effectively I-1 would make a mockery out of the right to refuse life-

saving treatment. Suppose I am a dialysis patient and I am not a candidate for

transplant. After some years on dialysis I decide I have had enough. At T1,

while competent and still on dialysis, I decide that I will not take my next

scheduled treatment at T2 and will simply allow myself to die. At T2, a day

after my skipped treatment, I am beginning to fade. I am then re-tested for

capacity, and found to be confused. I am deemed to lack capacity to refuse

treatment and am put back on dialysis. This is a preposterous case: obviously

people who have competently chosen a path that they know leads to death

will likely lack decisional capacity right before death. But that does not mean

that they can be ethically or lawfully coerced them into treatment1.

1 I owe, with gratitude, this example to the anonymous reviewer of this paper

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Sometimes we make a decision at T1, which we may or may not think

about as applying to the future. Then at some later point (T2) someone might

ask us again about the same matter, and we might make the same decision

or a different one. It is fair to ask now at T2 whether we have the capacity to

make the decision in question. But anorexia seems to be a different type of

case: the anorexics make a decision at T1, and indeed makes repeated

decisions and life choices, that have implications for the present and for the

future, and they recognize and accept (perhaps merely as a side-

consequence) the implications that ensue prolonged malnutrition. By adopting

a policy of caloric intake restriction at T1 they know full well that if they stick to

this policy long-term, they may seriously damage their health and/or die, and

slowly over time it becomes clearer and clearer to them that the risks are

materialising and their body is giving up on them. But even though they often

do not want to die (see later), they sometimes prefer death over a change in

their policy2.

Whether or not coercive intervention at T2 is ethically justified (and

should be justified at law) depends on whether or not the person had capacity

at T1 and on whether their adoption of a policy or plan at T1 included an

acceptance of the possibility of death at T2. At T1 of course a personsome

anorexics may well say: “I will never get to the stage of dying! I am just dieting

a little”; but along the way she they will experience the pains of prolonger

starvation and some change their plan, some do not, and put up with those,

and even with the prospect of dying, because death is for them preferable to a

change of plan.

2 Again I wish to thank the anonymous reviewer for pointing this out to me

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What matters morally is not whether a person has capacity at death’s

door, but whether she has capacity during the time that is leading up the

pathway to that door.

Of course, some deny that people with anorexia ever have capacity, at

T2, at T1 and even if they have it at T1 they lose it somewhere along the way;

but then they need to give a different argument for that. I-1 (the judgment of

incapacity as given by the judge) has been shown to fail. 

Incapacity argument 2

I-2 Irrational fears

In the case of Ms L, the judge held the patient incapable of making decisions

about therapy because of her illogical fears of weight gain ([2012] EWHC

2741 (COP) at 53).

One could argue that if I have a fear that you are giving me poisoned

water, and I refuse to drink because of this irrational fear, my irrational fear

prevents me from making a capacitous decision; irrational fears must have a

place in the determination of people’s capacity. But as Gibson notes “There is

a difference between a philosophical view that irrational fears obscure the

ability to reason and [… a] claim that an individual diagnosed with severe

Anorexia Nervosa has an irrational fear that prevents deliberation” (Gibson,

2015, p.238); the philosophical view is correct, but it cannot be applied to

anorexia in this way, because anorexics are said to have irrational fears only

because of the choices they make.

Observing this problem of rationality in connection with the case of Ms

E, Jackson J noted that Ms E is in a “catch 22 situation concerning capacity:

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namely, that by deciding not to eat, she proves that she lacks capacity to

decide at all” ([2012] EWHC 1639 (COP), para. 53). Here the individual

makes a choice, and it is only on this basis that she is said to have obsessive

fears.

A different interpretation of the anorexic’s fear of weight is that this fear

is part and parcel of the goal to be thin. In other words, the anorexic may not

have a fear of fat that drives the decision to be thin; rather the opposite, she

may have a goal to be thin, and fears what may interfere with the

achievement of that goal. This is important, because the fear, from this point

of view, is not irrational, but perfectly rational if seen in light of the person’s

goal.

A fear of gaining weight, or a fear of being treated coercively, would

only be irrational if it is irrational to desire to be extremely thin. What is really

being targeted here is not the patient’s fear, but the patient’s goal. It is being

implied, without argument or without this being made explicit, that the

anorexic goal of being thin is an irrational goal, or that it is irrational to prize

thinness above life and health.

But when we think about the rationality of people’s goals, it appears

that anorexics are not alone in being irrational, if they are. Jehovah’s

witnesses refuse whole blood products and the goal is to obey what they

believe to be God’s word. However, that goal is also arguably irrational

because it is based on a partial and controversial interpretation of the Biblical

texts, not shared by the majority of the Judeo-Christian tradition (Savulescu

and Momeyer, 1997). Some people use homeopathy to treat serious

diseases; their goal is to get better while respecting some abstract concept of

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a natural equilibrium. Their goals are not responsive to evidence. To say that

irrationality of the anorexic’s goals indicates incapacity seems to be a form of

selective pathologizing (Gibson, 2017, p.108).

It also ought to be acknowledged that under English law, which in this

sense enshrines a liberal conception of autonomy, the evaluation of the

rationality of people’s goals is not a part of capacity assessment. A competent

adult may select medical options that are offered to him or her, and reject

medical treatment for reasons that may be rational, irrational, unknown, or

even non-existent (Re T [1992]), even when the outcome of his or her

decision will be serious harm or death. Capacity to give valid consent is not to

be determined by the apparent rationality of the result of the choice (St

George's Healthcare NHS Trust v. SR v. Collins and others, ex part S [1998] 3

All ER 673).

A person has a right to refuse consent to medical treatment for reasons

that are irrational or unreasonable, or for no reason at all (Sidaway v. Board of

Governors of the Bethlem Royal Hospital and the Maudsley Hospital [1985] 1

All ER 643 at 509 b per Lord Templeman; see also R v. Blame [1975] 3 All ER

446).

A so-called ‘formal or procedural’ conception of autonomy (opposed to

a substantive conception, which would suggest that one’s capacity can should

be evaluated on the basis of the content of the choice – i.e. a person is

autonomous if and only if the substance of her decisions meets some stated

standards of rationality) has been accepted and defended by a number of

liberal philosophers, among whom we should mention Engelhardt

(Engelhardt, 1996). Buchanan and Brock similarly have argued that, when

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assessing capacity one should ‘focus primarily not on the content of the

patient’s decision, but on the process of reasoning that leads up to that

decision’ (Buchanan and Brock, 1989, p.24).

An in depth analysis of the strengths and weaknesses of the traditional

liberal conception of autonomy, and of how it has been translated in legal

reasoning, goes well beyond the remit of this paper. It may well be that, on

further critical analysis, the metaphysical presuppositions that underpin the

classic notion of autonomy are contestable; or that the intra-psychic

cognitively-based measures of capacity assessment are not good measures.

However, suffice here to note that a finding of incapacity based on the

irrationality of the anorexic’s goals not only is not easily reconcilable with the

functional approach that underpins capacity law in Anglo-Saxon jurisdictions,

but risks challenging the fundamental right of all people to live their lives

according to their own preferences, traditions, values, religions.

The argument that anorexics lack capacity because of their irrational

fears, I-2, is thus also to be dismissed.

Incapacity Argument 3

I-3: An argument of causation

In discussing the case of E, the judge said:

[I]t is clear that in terms of MCA s. 3(1) she can understand and

retain the information relevant to the treatment decision and can

communicate her decision.

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49. However, there is strong evidence that E's obsessive fear of

weight gain makes her incapable of weighing the advantages and

disadvantages of eating in any meaningful way.  For E, the

compulsion to prevent calories entering her system has become

the card that trumps all others.  The need not to gain weight

overpowers all other thoughts.” ([2012] EWHC 1639 (COP) AT 49)

This is another common argument, often found in ordinary discourses and in

the literature. However common, this argument is false (Giordano, 2001.

There are other arguments which could be used to assess the validity of the

claim that anorexia jeopardizes people’s autonomy and capacity: for example

the concept of mental illness could be questioned; the concept of capacity

could be questioned. The argument in this section just focuses on I-3). This

argument could be true only if it were also true that anorexia could be the

cause (efficient, not final) of people’s behavior.

In his Metaphysics, Aristotle distinguished four meanings of the word

‘cause’: material, formal, efficient and final (Aristotle, Metaphysics Book V, 2).

The two relevant meanings here are efficient and final. A final cause is the

cause (aim or goal) that motivates behavior. If my goal is to complete a

marathon, I will need to train regularly. An efficient cause is one that effects

certain occurrences, and this can be independent of people’s aims. If, while

running, a branch of a tree falls upon my head and causes me to stop training,

then the fall of the branch over my head is the efficient cause of the

interruption of my running, no matter how strongly I want to complete a

marathon.

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The difference between a final and an efficient cause is important in

psychiatric care, because the confusion between the two can lead to the false

conclusion that the sufferer lacks capacity, and can thus lead to justify

compulsory intervention without a sound logical basis.

In the case of anorexia, it could be said, for example, that diet, or

refusal of treatment, is caused by the desire to be thin and to continue to be

thin. Thinness is the final cause of diet. We have seen in the previous section

that questioning people’s capacity to form goals meets with important ethical

problems: many of us have goals whose achievement involves various

degrees of harm to self (for that matter, running a marathon too), and one

would have to argue why the goal of being thin of the anorexic is indicative of

psychopathology or otherwise of a lack of capacity, whereas, say, the goal of

refusing standard medical treatment in favor of homeopathy, or the goal of

running marathons, are not indicative of any impairment in capacity.

But when it is stated that anorexics refuse food because of their

obsessive fear of gaining weight, it is not in this final sense that the

conjunction ‘because’ is used; it is rather in its efficient sense. The judge, in

E’s case reported above, was saying that the obsessive fear of gaining weight

was what led the patient to refuse food and therapy (and thus what rendered

her decision incapacitous, in spite of her intellectual understanding). The fear

is here presented as something insidious present in the sufferer’s mind, which

then maneuvered the sufferer like a puppet to refuse food and to diet and to

refuse medical care.

But if one were to ask the judge why he thought that E had these

obsessive fears, the judge would have probably answered that this was

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because she suffers from anorexia, that these fears are an inherent part of

this mental illness. In fact, at para 48 the judge said: “There is no doubt that E

has an impairment of, or a disturbance in the functioning of, the mind or brain

in the form of her anorexia”. So, obsessive fears are not in these arguments

regarded as the ultimate efficient cause of refusal of food and therapy;

anorexia is. The insidious item present in the mind of the sufferer and who

maneuvers the sufferer like a puppet is “Anorexia”, which also presumably

“causes” these irrational and obsessive fears. Statements of these kinds are

common in ordinary discourse (“she is so thin because she has anorexia”;

“she is obsessed with exercise because she has anorexia”), and in the clinical

literature (Geppert for example argues that the “primary symptom of the

disorder [is] a pathological rejection of life-sustaining treatment”) (Geppert,

2015), but they have been also represented in legal reasoning since the

earliest cases were brought before the courts of England and Wales.

Already in the 1992 case of Re W, Lord Donaldson MR argued that

anorexia nervosa “creates a compulsion to refuse treatment or only to accept

treatment which is likely to be ineffective. This attitude is part and parcel of the

disease and the more advanced the disease, the more compelling it may

become” (Re W (a minor) (medical treatment court’s jurisdiction) [1993] Fam

64 at 81, [1992] 4 All ER 627 at 637). In Re C (Re C (a minor) (detention for

medical treatment) [1997] 2 FLR 180 (Fam Div)) the judge held that C did not

retain the capacity to make a decision about the treatment for her mental

disorder, “due to the effect of her illness”.

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However common, all of these claims are empty, tautological claims.

They involve taking the description for an explanation. This fact has not been

given the adequate weight it should have been given in clinical practice.

Anorexia is a term that summarizes a number of behaviors (diet, over

exercise, rigid food selection and so on). It also summarizes a number of

experiences (fear of weight, amenorrhea, and so on). When a person

manifests a number of these behaviors and experiences, she may get a

diagnosis of anorexia nervosa. Therefore a person is (called) anorexic

because she manifests these behaviors and experiences. This being the

case, it is tautological (that is circular and meaningless) to say that she has

these behaviors and experiences because she has anorexia. To say that a

person has some behaviors and experiences because she has anorexia is

tantamount to saying that she has some behaviors and experiences because

she has some behaviors and experiences (having anorexia, in fact, only

means having those behaviors and experiences). Anorexia, agoraphobia and

many other psychiatric terms are names that refer to determinate phenomena.

These terms summarize a number of experiences and behaviors, but don’t

say anything about their cause(s).

This may become clearer if we take the example of a condition such as

agoraphobia. Agoraphobia means, literally, fear of open space. When I say

that an individual has agoraphobia I mean that this person has a fear of open

spaces, of crowds, of mixing up with people. If you ask me why Y never goes

out with his friends I can sensibly answer that this is because he has a fear of

crowds and open space. But if you ask why he has these fears I cannot

sensibly answer that this is because he suffers from agoraphobia, because

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suffering from agoraphobia means no more no less than having those fears.

To say that Y has those fears because he has agoraphobia is the same as

saying that Y has those fears because he has those fears. This means that

the diagnosis in these cases has descriptive value, not explicative value.

The confusion here may arise because some psychiatric or medical

conditions are given names which do more than summarizing clusters of

experiences and behaviors, and which do have some explanatory value. So

one may be led to believe that all psychiatric and medical conditions have

explanatory value. Syndromes like Tourette or Alzheimer’s disease are

examples of these: here the names do not have per se any explanatory force.

However, the experiences and behaviors that sufferers have can be

explained, at least to a significant extent, by the neurological conditions to

which those names refer. Although these neurological factors do not provide

an exhaustive explanation of why people are affected, and are affected to a

certain extent or another, those neurological factors provide at least a partial

causal explanation of the sufferers’ condition. At least in some sense, thus, it

is true to say that, for example, ‘tics’ may be ‘a symptom’ of Tourette or that

Tourette ‘causes’ involuntary movements. It is not true in the same way to say

that dieting is a symptom of anorexia. This raises further philosophical issues

relating to the relationship between mind and body, genes and environments,

biological and social factors and epistemological issues relating to the notion

of mental illness (and more broadly perhaps to the notion of illness). What

matters here is that in the case of anorexia there is no known efficient cause

of people’s experiences and behaviors. Research has for a long time tried to

identify the biological causes of anorexia. Familiarity has been found in eating

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disorders, and this suggests that genetic factors play a role, but no genetic

variation has been so far correlated to the experiences of anorexics (Shih,

2016). Therefore, as it stands, the diagnosis of anorexia only refers to

people’s experiences and behaviors and no more than these.

Anorexia cannot be the cause (efficient cause) of anything, because

we don’t know what anorexia is – it is only a name given to a cluster of

familiar experiences and behaviours. Of course many of us have trouble

grasping why it is so hard to declare ‘Pathological’ behavior that has self-

destructive consequences. It is understandable that one wants to find an

explanation in these cases. But what is needed a principled way to distinguish

capacitous choices for unusual ends and incapacitous choices. If we were to

observe some unusual, self-harming behavior and then discover that it is in

fact caused (efficient cause) by a disease — that people start the behavior

when they develop the disease and stop it when they recover and we

understand at least roughly how the chain of causation works (so we are sure

there is disease causation) — then we might feel more confident overriding

the wish to engage in this behavior of someone known to have the disease.

But anorexia is not like that. All we really have is the behavior. The real

causes are hidden, and so relying on this flawed causal argument not only

risks overriding choices without sound ethical and legal reasons, but also

hinders on the finding of that principled basis that the judges may be looking

for.  

It may well be the case that some anorexics lack capacity, but it would

be false, and meaningless, to state that this is so because they have

anorexia.

22

One could still object to this that all of those with anorexia fear weight

and have an irresistible urge to be thinner and thinner. But it is also true that

all those who have a fever have high temperature. It is equally tautological to

say that these people have high temperature because they have fever as it is

to say that anorexics refuse food because they fear putting on weight or

because they have anorexia.

Importantly, the psychiatric diagnosis has predictive value: when for

example I am told that a person has anorexia, I expect the person to have

certain sorts of behaviors and experiences. If somebody says: “I am going to

introduce you to Anna, a friend of mine: she has anorexia”, I expect to meet a

rather thin person who will not join us for an ice-cream. The predictive

potential has obvious clinical importance, and helps people to set actions and

behaviors in a context, and to make apparently inexplicable behaviors more

tolerable. However, the diagnosis has no explicative value and it would be

ethically and legally important that this fact be more widely recognized in

clinical and legal practice.

This, in fact, has important clinical and ethico-legal implications. We

can predict that Anna will refuse medical treatment, or that she will be

ambivalent towards it. We can predict that she fears weight gain, and we can

also predict the course of the condition in some cases, but we do not know

why she fears weight gain and why she diets so strenuously. We can predict

that she will be adamant to defend her thinning strategies, and therefore that

she will probably refuse medical treatment if this involves putting on weight.

But to the question of: ‘why does Anna refuse to eat?’ we need to respond

with an admission of ignorance. Understanding the tautology is an admission

23

of ignorance, and therefore an exercise of humility in front of others’

experiences and behaviors. They may not know why they have come to be so

frightened of fat, and neither do we. Familiarity resembles knowledge and

understanding but is neither of those two things. Patients and carers, and

doctors, are all in the same morass of uncertainty when it comes to anorexia.

If I3 is false, then it cannot be used to justify compulsory treatment or

indeed making any decision on behalf of the anorexic. Any claim like: “she

starves because she has anorexia”; “she can’t decide because of her

anorexia” are empty, tautological claims. The fact that a situation recurs in

similar ways in many people allows us to recognize it and possibly even to

devise helpful strategies of intervention, but does no more than this.

Incapacity to refuse food and incapacity to refuse treatment: friends or

foes?

Another problem with the arguments used in the courts is that many appear to

conflate incapacity to make decisions around food with incapacity to make

decisions about therapy. These two are not necessarily the same. In a

seminal paper on the matter, Heather Draper argued that even if the anorexic

were by definition incapable of making choices about food, this would not ipso

facto entail incapacity to refuse therapy. She writes:

What of the sufferer from anorexia who refuses therapy, not

because she thinks that her condition is not life-threatening, nor

because she refuses to accept that she has a problem at all, but

because for her […] the burden of therapy and the side-effects of

24

successful therapy – in terms of the body with which she will be left

– are such that she prefers to take her chances with death?

(Draper, 2000)

Draper points out that the anorexic who refuses life-saving treatment might do

so because she makes a capacitous judgment over the quality of her life

(Draper, 2000). This point has been reiterated more recently by Cave and Tan

(Cave and Tan, 2017).

Having illustrated the problems with the reasoning around capacity we

will now move to the notions of futility and best interests. First it is necessary

to consider whether coercive treatment can ever be in the patient’s best

interests, and indeed, what ‘treatment’ may mean in cases of anorexia,

particularly in cases such as those considered by the courts and discussed

briefly earlier, that is in cases in which anorexia is severe and enduring.

Secondly, it is necessary to consider whether treatment for anorexia could

ever be futile. Both these issues, as we are going to see, are more

complicated in cases of anorexia than they may be in other cases.

What is ‘effective treatment’ for anorexia?

It seems that the only way to help people in the grip of an eating disorder is

psychotherapy. There are many different types of psychotherapy and many

different forms of eating disorders (Lampard and Sharbanee, 2015). Family

based therapies seem to be effective (Voriadaki et al, 2015) especially with

adolescents (Rienecke Hoste, 2015); self help and online therapies even

25

through social networks or phone apps (Juarascio et al, 2015) can be useful

in the treatment of eating disorders (Loucas et al, 2014), particularly bulimia

(Wagner et al, 2015); some pharmacotherapy may be useful especially in

cases of binge eating disorder - a new category that has been introduced in

the DSM V (APA, 2013); even deep brain stimulation has been utilized and is

a potential form of treatment for eating disorders (Park et al, 2017). One

recent study mentions neuro-modulation (Coman, 2017).

However, none of these can be provided compulsorily (though deep

brain stimulation or neuro-modulation could perhaps in principle fall under the

remit of S 63 or S 58 of the MHA in England and Wales). Particularly

psychotherapy cannot work unless the patient is engaged with it.

Therefore, when the normal principles of decision-making are applied

to anorexia, and thus when it is said that if the patient lacks capacity then

treatment can be ethically and lawfully provided even against her refusal in

her best interests, the treatment in question is invariably force-feeding. The

problem with this is that force-feeding is, at best, a remedy to the secondary

symptoms of starvation and most probably an extreme measure to prevent

likely death, or to ‘buy time’, and it is unclear whether it can help patients to

develop healthier relationships with their bodies, food and with themselves, as

we shall see shortly.

This problem was discussed in the late 1990s in the English courts and

by the Mental Health Act Review Expert Group (Mental Health Act Review

Expert Group, April 1999). In Re KB (Re KB (adult) (mental patient: medical

treatment) [1994] 19 BMLR 144) following the court's decision in Airedale

NHS Trust v. Bland, (Airedale NHS Trust v. Bland [1993] 1 All ER 281 (1993)

26

12 BMLR 64) it was stated that naso-gastric feeding was medical (and not

psychiatric) treatment, but in this case it was asked whether force-feeding was

given for the physical symptoms (for example, to increase weight), or for the

mental disorder. Ewbank J. held that relieving symptoms was just as much a

part of treatment as relieving the underlying cause. In Riverside Health NHS

Trust v. Fox (Riverside Health NHS Trust v. Fox [1994] 1 FLR 614), the judge

declared that feeding was treatment within s. 145 of the MHA. S. 145 at the

time stated that treatment for mental disorders included nursing, care,

habilitation, and rehabilitation under medical supervision. In 1993 Sir Stephen

Brown stated that feeding ‘is an essential part of nursing and care’, and

‘feeding a person suffering from anorexia nervosa is an essential part of that

treatment’ (Sir Stephen Brown, P (1993) 20 BMLR 1 at BMLR 5). In

November 1999, the Secretary of State for Health accepted the Expert

Group’s recommendation on feeding contrary to the will of the patient

(Secretary of State for Health, 1999) and since then it does not seem to be

disputed that this treatment can be either lawfully authorized by the courts or

lawfully provided to anorexic patients sectioned under the MHA.

But whereas the treatment may be lawfully imposed, its efficacy is

disputed. Studies on the long-term outcome for patients who have been

forcibly fed give conflicting results; part of the ambiguity relates to the fact that

it is not clear what ‘recovery’ means in cases of anorexia. One study suggests

that recovery is achieved when a patient is “no longer being compulsorily re-

admitted” (Mekori et al, 2017); to this end probably force-feeding is

insufficient, and other forms of support to out-patients need to be provided to

ensure that they do not relapse. Other studies suggest that force-feeding or

27

other compulsory interventions may erode patients’ willingness to engage in

psychotherapy (Schreyer et al, 2016), and thus may compromise the

patient’s welfare. Other studies report higher mortality rates in patients who

have been forcibly treated compared to those who have not (Ward et al,

2015). So one question arises as to whether coercive treatment, which in

addition to being a violation of the stated wishes of the patient, and in addition

to representing a significant form of bodily intrusion, is also likely to be

ineffective to treat anorexia, can ever be in the patient’s best interests.

Clinicians are thus in an invidious situation: treatment that is or is likely

to be beneficial cannot be provided unless the patient wants it. So either they

do nothing, with the result that the patient will probably die, or they gamble

with force-feeding, which may keep the patient alive but is unlikely to help with

the psychological condition.

Of course it could be argued that if the only way to keep a patient alive

is by forcibly feeding her, the treatment is necessarily in the patient’s best

interests. However, it is not clear that this is a correct analysis. This may be

true only in cases in which force-treatment can realistically give the patient a

chance to improve her condition overall. In cases in which treatment keeps

the patient alive but does no more than that, it could be said to be in the best

interests of the patient only on the assumption that life is to be preserved

regardless of its quality and of the burden suffered by the patient. A treatment

that only prolongs life in this way may be reasonably regarded as futile, and

clinicians are not only entitled, but may have a duty to discontinue it. But then

another question arises: apart from cases in which even inserting a cannula

under physical or chemical restraint is likely to kill the weakened patient (as in

28

Ms L’s case above), in what sense can treatment for anorexia, even for

severe and enduring anorexia, ever be futile?

Can force-feeding ever be futile?

We have seen just now that there are problems in determining whether it can

ever be in the patient’s best interests to be forcibly fed, but a related question

is whether force-feeding can ever be futile. Of course the two issues are

related.

The notion of futility is possibly always controversial. We have seen in

the case of Charlie Gard (Great Ormond Street Hospital v Gard and Yates

[2017] EWHC 1909 (Fam)) and the more recent case of Isaiah Haastrup

(Kings College Hospital NHS Foundation Trust -v- Thomas and Haastrup

[2018] EWHC 127 (Fam) that what is regarded as futile changes depending

on who makes the judgment. Extending life by one day or one hour may not

be futile to some people and may be seen as futile or even cruel by others.

Indeed as we have seen earlier, in the three cases reported earlier in

which discontinuation of forced treatment was authorized, discontinuation was

not authorized only in the case of Ms E, because she allegedly had a 20%

chance of recovery following another cycle of force-feeding – so in her case,

treatment was not deemed futile, whereas in the other cases it was.

However, in principle, it is always or nearly always possible to keep an

anorexic alive, so if mere life is a good regardless of its quality then feeding

an anorexic is never futile. But very few would argue that life should be

preserved regardless of any consideration for its quality, and regardless of

any consideration relating to the burden of therapy. This is why all national

29

healthcare systems ration resources on the basis of some cost-benefit

calculation. A judgment about futility is thus not just a clinical judgment: it is a

judgment about costs and benefits of the treatment, including personal and

financial costs (Yager, 2015). This in principle applies to every area of

medicine.

In cases of severe and enduring anorexia, asking whether treatment is

futile is asking what type of life is worth living and fighting for, and what can be

reasonably asked of patients in the name of the imperative to preserve life.

Asking whether treatment is futile is not making an objective assessment of a

medical procedure: it is instead making a prediction on whether the anorexic

will change her attitude towards food, her body and her life after being forcibly

fed. This prediction is painfully arduous.

In the case of Ms E above, her parents agreed with the team that all

treatment options had been exhausted and advocated her “right to die”.

Disputes around the right to die or about whether treatment is futile usually

concern people with either chronic degenerative or terminal illnesses (cancer,

motor neuron disease, for example) (think of the cases of the Gard and

Haastrup cited above, but also Terry Schiavo, Diane Pretty, Tony Nicholson,

recently DJ Fabo, tetraplegic, blind and tracheotomised)

(http://www.bbc.co.uk/news/world-europe-39117472). Anorexia however is

not chronic and terminal in the same way (Geppert, 2015). The life of the

anorexic can be rescued and the secondary symptomatology of anorexia,

however hideous, is nearly entirely reversible (Kaplan and Garfinkel, 1998).

This challenges us to re-think the moral significance of treatability (I will return

30

to this later in this paper), but also represents a further challenge to the notion

of futility, in the particular case of severe and enduring anorexia.

We are therefore confronted with an acutely problematic situation:

according to the usual principles of ethical decision-making, a patient who has

capacity to refuse medical treatment has an absolute right to do so; this

seems very hard to accept in cases of anorexia, for reasons I will further

explain shortly. When patients lack capacity, on the other hand, normally

decisions are made in their best interests. Treatment will go ahead if in their

best interests and will be discontinued if it is not or if deemed futile. We have

seen that it is not easy to determine whether the only treatment that can go

ahead without the patient’s participation can ever be in the patient’s best

interests. But we have also seen that, from a different perspective, it is not

clear whether forced treatment for anorexia, even when the condition appears

severe and enduring, can ever be futile. The usual principles of decision-

making are thus not straightforwardly applicable to cases of anorexia nervosa.

Which principles should then guide decisions?

Before discussing the principles of ethical decision-making, in light of

the reflections offered so far, I draw some conclusions relating to the five

cases discussed at the beginning of this paper: Ms L, Ms Z, Ms X, Ms W and

Ms E.

The five cases: were the decisions morally defensible?

If what has been said so far is persuasive, it follows that at least in four

out of the five cases the decision was, overall, the right decision. However, it

31

was reached for the wrong reasons, or, more precisely, it was justified with

mistaken arguments.

The decision to authorize discontinuation of forced treatment (which is

not the same as removing all treatment options) seemed the obvious decision

in the two cases of Ms L and Ms Z: in these two cases, it may be worth

remembering, force-feeding them was likely in itself to kill them. On this

ground alone further force-feeding would violate straightforwardly the moral

and professional imperative to do no harm. Also in the cases of Ms X and Ms

W the decision ultimately appeared right; it does not seem that in their case

force-feeding may be life-threatening for them. However, there was

consensus that being forced into therapy would not be beneficial to them, thus

the beneficence grounds that legitimize, morally, paternalistic action were

lacking.

In the specific case of E, the only case in which further forced

treatment was authorized, the judgment was based on the estimation of a

20% recovery. It is unclear how has the expert arrived at that number, and

what that 20% referred to (chance of survival after a further course of

feeding? Improved quality of life? Recovery from the eating disorder?) Absent

those clarifications, the decision, morally speaking, remains dubious. As we

will see further in the next section, if there was really a high chance of

recovery following coercive intervention, not mere survival, but recovery of a

life of meaning to the patient, paternalistic intervention, in the least intrusive

way possible, may have been justified. But such odds were unlikely in this

case. Longitudinal studies suggest that the possibility of recovery goes down

dramatically with time, particularly after a critical period of 3 years (Hay, 2012;

32

Zipfel, 2013). The judge thus seems to have made a decision on the basis of

a prediction that could not possibly be based on good evidence.

Moreover, all of these patients seemed to satisfy the minimal and

cognitively focused measures of capacity. Capacity is to be presumed unless

there is evidence of incapacity. This evidence was lacking in these five cases.

More should have been said to explain why it was appropriate to make

decisions in the patients’ best interests, solid evidence of incapacity lacking.

Principles of ethical decision-making: a case for exceptionalism

If what has been said so far is persuasive we may draw the following general

principles.

1. Respect for autonomy and exceptionalism

Clinicians have a moral and legal imperative to respect a capacitous refusal of

treatment. There is little scope, in medical care, for derogation from this moral

principle. Anorexics are usually highly intelligent people, functional often in

most areas of their life. As seen earlier, many arguments used to suggest that

anorexics lack capacity are flawed or incomplete. In an early study Tan et al

wrote: “In terms of intellectual measures such as understanding and

reasoning, even severe anorexia nervosa patients may be judged to be

competent to make treatment decisions” (Tan et al, 2007).

From this perspective, it is difficult to see how forced intervention of

any kind can ever be morally justifiable. If people have an absolute right to

refuse medical treatment, if they have the capacity to do so, and if some

anorexics have the capacity to do so, then those anorexics have an absolute

33

right to refuse medical treatment. The logic is stringent. However, as I have

also suggested elsewhere (Giordano, 2005), the exceptional circumstances

that characterize anorexia justify a partial derogation from the principle of

respect for autonomy.

In cases of anorexia it may be defensible in some circumstances to

intervene against the patient’s wishes, at least temporarily, even if the patient

appears to have capacity, if there is concrete prospect of recovery for the

patient. As mentioned earlier, anorexia is not chronic and terminal in the same

way as other diseases, like cancer may be (Geppert, 2015). The severely

emaciated anorexic looks like a patient afflicted by terminal illness, but she is

not: the secondary symptomatology of anorexia is nearly entirely reversible

(Giordano, 2005, chapter 1). Some patients recover, even after many years

(Cave and Tan, 2017) and this supports not the faith in miracles, but the

concrete hope that everything could “come back to normal”, that the

nightmare finishes as it started (Palazzoli et al, 1998, pp. 115-18). Moreover,

anorexia is not a suicidal choice – many anorexics do not want to die; they do

not know how else to live. These aspects of anorexia cannot be divested of all

moral significance.

Moreover, a 2003 study suggested that many anorexics will “thank you”

for having imposed treatment, even if they regard it as traumatic and coercive

(Tan et al, 2003). Retrospective gratitude is not usually a justification for

paternalistic action – clinicians cannot ethically (or lawfully) impose medical

treatment based on a prediction that patients may be grateful later on.

However, the exceptional features of anorexia may again temper this general

rule. It appears unreasonable to discount entirely the possibility that a person

34

with anorexia, who is typically young, otherwise healthy and who typically

does not want to die, will be grateful that she has not been allowed to die,

even if at this stage the person has capacity to say no to medical treatment.

This does not mean that medical treatment of any sort can ethically be

administered at the discretion of the treating clinician. This rather challenges

us to re-think the moral significance of treatability and of retrospective

gratitude.

Admitting that there are moral reasons to act paternalistically, at least

temporarily and in the least possible intrusive way, has at least the merit of

candor. It is certainly better than attempting to justify coercive action with

inappropriately formulated arguments such as the incapacity arguments

discussed earlier. Such candor can avoid further confusion in the

management of an already complex condition. Introducing the idea that

paternalism may sometimes be ethically justified, may raise legal challenges

(for example, what the implications of the derogation from the usual principle

of respect for autonomy may be). But refusing to be candid about the reality of

anorexia results in contorted legal reasoning and morally questionable clinical

practice.

There is one final observation to make with regard to capacity: Draper,

as we have seen earlier, suggested that some anorexia sufferers may have

the capacity to refuse medical treatment, even if they do not appear to have

the ability to recover from anorexia, because they can make a judgment upon

their quality of life and the burdens of therapy. If she is right, then the person

who has struggled with anorexia for a long time, who maybe has been already

treated compulsorily, may have greater insight into her quality of life and

35

greater capacity to refuse medical treatment than someone who has a shorter

history of eating disorders. Therefore a patient who has been afflicted for

longer and who appears more ‘recalcitrant to treatment’, contrary to what one

may think, may be the patient who has greater capacity to refuse treatment

and that more deserves respect.

Of course refusal of food and a refusal of treatment will, outwardly, look

a lot alike, if the treatment in question involves being fed. Presumably, one

could argue, it would make a difference whether the individual said that she

wanted to refuse treatment because she finds treatment unbearable, or said

that she wanted to refuse treatment because she hated the thought of gaining

weight. And she could in actual fact say both things. She may well say that

she refuses treatment because she does not want to put on weight (that in

itself, I have tried to show earlier, would not indicate incapacity); but at the

same time she could also say that she refuses treatment because she is tired

of living a life whose quality for her has become too low, and she does not see

the chance of things getting better.

A patient who has been sick longer may have more insight into the

balance of benefits and burdens treatment brings. The extra-experience may

not be enough. As I argued earlier, even a straight refusal of treatment based

on the goal of thinness should not be taken as synonymous of incapacity.

However, as obviously there is no coming back from death, we may want to

be extra cautious and we would presumably want some evidence that the

person before us is actually thinking about this balance when she chooses.

We may need some assurance that the individual in front of us is actually

36

drawing on and using her extensive experience to make a decision about

quality of life (as opposed to, or in addition to, a decision about caloric intake).

Admitting that a sicker patient may have greater capacity to make a

refusal may in principle affect or even revert the legal thinking that we have

seen applied to the cases discussed by the courts of England and Wales.

2. Beneficence and early paternalistic intervention

If paternalism is justified at all, it is justified because it is or is likely to be

beneficial. The cases that have appeared before the courts invariably concern

extremely emaciated patients literally at death’s door. In these cases, the

patients are said to lack capacity and decisions are made in their best

interests. However, again there are peculiar features in anorexia that render

this line of action problematic, as we have seen earlier. Moreover, the earlier

anorexia is tackled, the better the prognosis (Szabo et al 2015; Rohde et al,

2015). Because of this, and because early intervention is likely to be less

invasive (it would not involve, for example, naso-gastric feeding), there would

be a stronger ethical justification for early paternalistic intervention than for

late coercive treatment. It is thus necessary to challenge the assumption that

involuntary treatment is only legitimate when the patient has reached the

threatening stages of malnutrition. It is also necessary to challenge the current

practice of prioritizing patients at serious risk of malnutrition. NICE guidelines,

for example, suggest that “Early treatment is particularly important for those

with or at risk of severe emaciation and such patients should be prioritised for

treatment”. (Nice, 2017, 1.2.2). Bulimia however can also be fatal (the

37

depletion of electrolytes through vomiting can cause epileptic attacks, heart

arrhythmias, respiratory paralysis, cardiac arrest and death (Jack and Katz,

1994), and of course the psychological suffering may lead to suicidality,

despite the fact that sufferers often have normal weight.

It is thus necessary to reflect on how to identify anorexia and other

forms of eating disorders, whether or not they appear associated with severe

fat loss, how to better integrate primary and secondary care, care in different

settings, schools, recreational environments (where many will go to exercise

for example), home, hospitals, and discuss the ethico-legal and practical

issues around how early paternalism can be implemented (weight loss

appears an obvious identifier of eating disorders, but there are other signs

too; NICE mentions some of these in the most recent guidance - Nice, 2017 -

and I have discussed others – Giordano, 2010. This may include weight

changes, social withdrawal, increased preoccupation with food and caloric

intake, cramps, tooth problems, change in exercise habits and others).

3. Compassion

In one of the cases reported earlier, bloggers responded negatively to the

court’s decision to authorize discharge from the framework of the MHA. The

court was allowing the patient to enter palliative care and refuse further

feeding. The bloggers viewed this as an inappropriate case of ‘giving up’. One

blogger wrote:   -

Judy: “Terrified – so it is OK to let people with mental illness die”

38

Anonymous: “I agree […] Chronic patients are hard and frustrating to

treat... shove them all into palliative care and assuage your guilt by

pretending it's in their best interests. […]”

(http://themaskedamhp.blogspot.co.uk/2014/11/anorexia-to-treat-or-let-

die-case-of-msx.html).

Whereas moral sentiments of concern and even blame may be

understandable, it should be noted that in none of the cases doctors, judges

or parents were ‘giving up’ on patients who could recover. All these cases

were, tragically, beyond help. What was most tragic is perhaps that all the

efforts by relatives and clinicians over the years proved ineffective. This again

raises the question of how to improve early intervention. More importantly,

what was foregone was not all treatment but coercive feeding, and coercive

hospitalisation with the purpose of feeding. In all cases the offer of treatment

on a voluntary basis remained open to the patients. Moreover, the bloggers

may not realize how much the patients in question were suffering. It cannot be

morally justifiable to keep patients alive into cycles of re-feeding when they

have had enough of trying and reiterate their refusal to be artificially fed or

kept in hospital. In a study on the care of vulnerable patients, a participant

involved in geriatric rehabilitation writes: “She has lost the will to live. For how

long must one fight with a patient who doesn't want to live anymore and

what’s to do good for this patient?” (Heidenreich et al, 2017).

Of course, the psychological impact of decisions of these kinds is

different in different cases; the geriatric patient, it could be pointed out, has

already had a long life whereas anorexics are usually young and have all life

39

ahead of them; prospects of quality of life amelioration may be limited and

arduous for the geriatric patient, whereas anorexics can recover entirely.

From this perspective the ‘loss of the will to live’ of the geriatric patient who

refuses to engage in rehabilitation may be more understandable, and more

tolerable to the parties involved (family, carers, clinicians) than refusal of

treatment in cases of anorexia. As suggested earlier, the psychological impact

on the meaningful others, and the exceptional features of anorexia, should be

assigned moral relevance in clinical decisions and legal reasoning. Not that

age matters per se; not that quality of life matters per se; not that treatability

matters per se; but when these factors are compounded together, they

provide a moral justification for exceptionalism in the care and treatment of

anorexia.

Recognizing this, however, does not mean that patients with severe

and enduring anorexia can ethically be kept alive indefinitely regardless of

what they say, or what they wish, or what they can tolerate. Considerations

about their quality of life and realistic prospects of recovery should be a part of

the deliberation in these cases. Consideration is not the same as calculation:

clinicians cannot be expected to make certain predictions, and there cannot

be any certainty as to what would have happened if further treatment had

been given at a particular stage. However, there is a reasonable balance of

probabilities that can be drawn on the basis of the patient’s history and overall

condition.

A really difficult balancing exercise must be performed in the care of

anorexia patients, and, in this exercise, compassion must find a space.

Deliberating that treatment will be discontinued (which includes, on occasions,

40

offering palliative care to the patient, to alleviate the physical suffering caused

by malnutrition) is not just about respecting their capacitous refusals, and is

not, as we have seen, just about acting in their best interests and is even not,

strictly speaking, discontinuing futile treatment. The moral basis for these

choices is primarily compassion, literally meant here as cum-patire, to

empathize with the patient, to respect their dignity and their integrity as these

may be intended from their own perspective.

In his Utopia, published in 1516, Thomas More talked about how an

ideal community would function. In this community, the sick would be taken

care of “so that nothing is left undone which may contribute either to their

health or ease”; and for those who are afflicted by “incurable disorders”,

others would

[U]se all possible means of cherishing them, and of making their

lives as comfortable as possible; they visit them often, and take

great pains to make their time pass easily…But if any have

torturing, lingering pain, without hope of recovery or ease…and

have in reality outlived themselves, they should no longer cherish a

rooted disease (Cayley, 1808, pp.102-103).

If by choosing to die patients “forfeit none of the pleasures, but only the

trouble of life”, then they would “not only act reasonably, but consistently with

religion” (Cayley, 1808, p.103).

41

REFERENCES

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