Should someone who has for a long time suffered from anorexia, and who is starving herself to death, be permitted to die or be force-fed in order to prevent her death?
There was a news story in the UK about a case of this kind recently, the case of ‘E’. A high-court judge has ruled that she should be force-fed against her wishes, on the grounds that she does not have the mental capacity to make informed decisions for herself. E is 32, and her BMI is around 11 to 12. She has had anorexia since the age of 11, having suffered (unbeknown to her parents) sexual abuse as a child. She was admitted to an ED treatment unit aged 15, and was hospitalised again in 2006, after giving up her studies at medical school. She also suffers from alcoholism and unstable personality disorder. At the time of the recent hearing, she hadn’t consumed solid food for a year, and since March had been consuming only a small amount of water. She described her life as ‘pure torment’. She was being cared for under a palliative care regime whose aim was to help her die in comfort. She had signed advance decisions (a sort of living will) in which she expressed the wish to be allowed to die, and not to be revived when the time came. There are conflicting reports as to whether or not she later made a revision in which she stated that she wanted to live and to make her own decisions about her future.
Aside from straight news reports such as the BBC’s, there have been some interesting commentaries on the case, raising important questions that have relevance beyond this single case.
In an article for the Guardian entitled ‘As hard as it gets’, Daniel L. Sokol, honorary senior lecturer in medical ethics at Imperial College London, discusses the concept of mental capacity, citing the Mental Capacity Act 2005: a person has capacity if she can understand relevant information, retain it, use or weigh it to make a decision, and communicate that decision. But as he says, ‘In practice, assessing capacity is an uncertain science.’ The question was not only whether E had capacity at the time of the case—given her weakened and medicated state, it seemed relatively clear that she did not—but whether she did last July and October when she signed the advance decisions, and whether since doing so she has done anything else clearly inconsistent with that decision, is more complex. The judge ruled that because clinicians conducted no formal assessment in October, and because she was ‘sectioned’ (involuntarily detained and committed to treatment under the Mental Health Act) on the day she signed the document, she did not have capacity then either. The other concept Sokol explores is that of ‘best interests’—often at the heart of thorny decisions in medical ethics. Would E’s best interests be served by letting her die, or forcing her to live, and how would one go about defining those best interests? In conclusion, he explores (with a little help from Wittgenstein) the point beyond which a decision-making process can no longer be fully justified, and when all one can say is: ‘This is simply what I do’. The most we can ask, to quote Isaiah Berlin, is that ‘none of the relevant factors be ignored’.
‘The unique torment of anorexic “E”’ by Kate Hilpern, explores what the author describes as the ‘irrational’ nature of the anorexic mind and the lack of capacity for critical judgement in the malnourished brain; the loss of control that quickly arises from a need for control; and research finding that anorexics who had been treated against their will found that all were grateful that this action had been taken. Hilpern insists on the ‘uniqueness’ of anorexia (and, in the title, of ‘E’s own suffering’), as an illness that ‘has a mental as well as physical component’. This is stating the obvious about anorexia, but to claim that this makes anorexia a ‘unique illness’ is a very odd statement about other illnesses. It’s hard to imagine any illness that has no mental component, given that the brain is part of the body, and cognitive habits—in areas from language to perception to emotion—are always permeated by aspects of one’s physiological state and of one’s environment, but it is perhaps true that anorexia is an especially striking example of the mind-body interaction, because it is an illness that consists in denying precisely this unavoidable interconnection between the two.
The anorexic thinks (in more or less articulated fashion) that her mind can hold ultimate sway over her body; that her body’s needs and wants can be rejected by her mind to positive effect; that the mind can somehow be purified by denying both brain and body the energy they require to function optimally. And when it all starts to go wrong, and suffering becomes too obvious to deny, it’s usually too late to find an easy way out. Anorexia is, then, a traumatically embodied experience of denying embodiment—sometimes to the point of death. If the sufferer reaches the point where she desires death, she has of course acknowledged the interconnection of mind and body, and embraced its consequences. If, as is more common, she simply doesn’t care any more whether she lives or dies, she has acknowledged the connection, but perhaps still doesn’t quite believe it could ever come to that—that this mental ‘strength’ of hers could ever result in the final obliteration of her body.
Some of the comments made by the judge, Justice Peter Jackson, when giving reasons for his ‘very difficult decision’, are also rather interesting. It was a decision, he said, which required ‘a balance to be struck between the weight objectively to be given to life on one hand and to personal independence on the other’. His comments included the following:
1. The judge pointed out that although she was ‘gravely unwell, she is not incurable’. ‘I would not overrule her wishes if further treatment was futile, but it is not. Although extremely burdensome to E, there is a possibility that it will succeed.’
This must be a crucial point. Anorexia is not an incurable condition like cancer or HIV. It can always be cured by refeeding, although not all its effects (e.g. osteoporosis) are always reversible. However long it lasts, there is the possibility of its ending. Both the possibility and the feeling of impossibility derive from the fact that the cognitive component is so significant: if the mental obstacle were removed, refeeding could occur (despite its inevitable difficulties), but the cognitive obstacle makes precisely its own removal inconceivable. Added to which, the physical state is part of a constant feedback loop with the mental state, so that each reinforces the other. Finding a way, and a time, to break into this circle and just start eating despite it all is as simple as it is difficult.
2.‘She does not seek death, but above all she does not want to eat or to be fed.’ ‘She sees her life as pointless and wants to be allowed to make her own choices, realising that refusal to eat must lead to her death.’
These comments tie into what I said about mind and body above. The acknowledgement of their interconnection goes as far as ‘realising that refusal to eat must lead to […] death’, but there is still a gap: she doesn’t want to die, but she doesn’t want to eat or be fed—yet of course to desire not to eat or be fed is ultimately, in practice, to desire death. The depression that results from the under-nourished state contributes to the anorexic’s perception of her own life as without purpose, and to the inability to see past those refusals to eat or be fed, to conceive of constructive rather than destructive choices. Depression is often associated with an inability to make choices or express preferences except for negatives: for not doing anything, for not getting out of bed, for not eating. This of course isn’t quite the same as wanting to do nothing, or wanting to stay in bed, or wanting to die. A blanket of low mood and lethargy prevents even these negatives from being positively formulated. Even in depression that becomes suicidal, the desire to commit suicide is in fact primarily the desire not to have to live, and suffer, any longer. (Rarely is there a longing to commit a ‘perfect’ act of suicide, though this does exist: I knew someone whose life ambition that was - and so her life was only short.) This entrapment in negation is the entrapment of depression, and when it is combined with anorexia, which is such a gradual and insidious way of ending one’s life, it easily becomes deadly.
3.‘E is a special person, whose life is of value. She does not see it that way now, but she may in future.'
This combines points 1 and 2, in an affirmation both of the value of E’s life and the possibility of her one day coming to affirm it too.
4. ‘I have been struck by the fact that the people who know E best do not favour further treatment. They think that she has had enough and believe that her wishes should be respected. They believe she should be allowed a dignified death.’ Force-feeding her ‘does not merely entail bodily intrusion of the most intimate kind, but the overbearing of E’s will in a way that she experiences as abusive’.
It is easy to see how force-feeding could, with a history like E’s, be experienced as akin to the abuse she suffered before. The bodily intrusion of having a feeding tube inserted down one’s throat is undeniably great, even if the intention is to save a life and to impart strength which one day might allow this person to move beyond that physical and mental pain. Whether the wishes of a woman clearly without ‘mental capacity’ in anything but the loosest sense should be ‘respected’—whether they can accurately be perceived any more as E’s own wishes, rather than the wishes of the anorexia and depression that have taken over her body and mind—is another matter. For the family and close friends of someone suffering from anorexia, knowing what is best is more or less impossible. In my own case, the arguments about what might give my illness the greatest chance of ending created an even greater gulf between my already separated parents; my friends either melted away in the face of my inability to be a friend back, or, in the end, did all they could to bring about my recovery. Who knows how they might all have responded if those efforts had failed. Perhaps the only psychologically possible response in such a case is: she knows better than we do, we have to defer to her now, even if her mind is incapable of making any decisions, or formulating any ‘wishes’ any more, let alone this one, and isn’t really even her mind any more.
The question of a ‘dignified death’ is also a difficult one. In starvation, the major organs—heart, lungs, stomach—shrink and gradually lose their functionality, through the metabolic shift to catabolism, the progressive breaking-down of fat and muscle. This may be accompanied by irritability and by fever or intense cold, swelling of fluid under the skin (oedema), and diarrhoea. In the final stages, possible neurological symptoms such as hallucinations and convulsions may be accompanied by muscle pain, and cardiac arrhythmia. During my anorexia, I never fasted for longer than about 36 hours (and that only very rarely, when travelling or similar), so I can’t speak from personal experience about how it feels. Nonetheless, the process is generally said not to involve pain of the kind experienced in semi-starvation: hunger ceases after a certain point (a point which E, of course, would long since have passed). Some of the symptoms just described may be experienced, but this is certainly a relatively painless way to die, as these things go. Nonetheless, describing it as ‘dignified’ raises some questions.
Dignity is a state of being worthy of esteem or respect, or of having inherent nobility, worth, or honour. It is hard to see how any of these attributes applies to the process just described, especially given that a person who has reached the stage that E has clearly does not have mental capacity to make a decision of this (or any) kind. Such a desire for death could perhaps be interpreted as a dignified refusal to live in a world in which sexual abuse can happen and go unnoticed, and in which psychological suffering can be so acute and so chronic. It is impossible objectively to compare individuals’ subjective experiences of suffering, so an argument along the lines of ‘people go through much worse and create strength and beauty from their suffering’ can never really be valid. But still, in the end, to decide to die—whether by one’s own hand, or by requesting that the healing hands of others be withdrawn—is to give up. I mean this in a morally neutral sense. Morality may come into it when other people suffer because a person gives up – but of course they also suffer when she struggles unsuccessfully to do more than subsist. At best, I think, in this kind of case, the giving up is morally neutral.
In situations of political or ideological protest, torture, or in cases where the alternative is an imminent and painful, there may be a morally admirable element to the decision to starve to death. But this cannot be said of a situation where anorexia is the primary disorder, where the only thing that is making it necessary to starve the death is the addiction to starving. There is no dignity in this (though there is no indignity either). The alternative is to be force-fed, which may be ‘undignified’ for a while, but which will bring mind and body back to life. There is a small risk of death through cardiac arrest during refeeding, but when carefully managed the risk is very small. (And death of heart failure is, if we’re comparing these things, probably the best of all ways to go.) These are difficult questions, but it seems to me that to attribute dignity to a death by starvation of a sufferer from anorexia is implicitly to subscribe to the dangerous complex of distorted value judgements that surround anorexia, associating refusal of food and thinness with strength, purity, and specialness.
5. ‘She is not a child or a very young adult, but an intelligent and articulate woman, and the weight to be given to her view of life is correspondingly greater.’
Anorexics are very often intelligent and articulate. As we have seen, this doesn’t mean that they retain ‘mental capacity’ throughout their illness. I was able to graduate from Oxford with the best degree of my year, but I was unable to think well enough to perform the simple daily acts of eating more that could quickly have lifted me out of depression, isolation, and gradual deterioration of body and brain. I disentangled with relish all the existential paradoxes of anorexia, but I couldn’t eat a single extra gram or calorie without suffering hours of mental agony. E may not be a child or a very young adult, but she doesn’t think like any other intelligent and articulate woman, she thinks like someone who is starving. The fact that women in her situation do not know this is itself symptom and proof of the severity of their curable sickness.