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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