In researching to write my previous post on this topic, for all my reading around on science journals and NHS factsheets, I missed the most important article I’ve read on the topic yet. Ilona Burton’s honest, elegant and profoundly thought-provoking account of her own experiences in the Independent, “force-feeding: there was a time when I would rather die than eat the food in front of me” is much more worthy of a read than the cumulative scholarly articles I came across.
My previous hang-up was over whether we can truly, fairly say that the woman in the current case can be deemed to be incapacitated by some combination of her physical and mental condition to the extent that she lacks legal autonomy. I say this tentatively as I’d hate to put words in her mouth, but Burton seems more concerned with a different question, one which I hadn’t fully considered;
Since 1997, doctors have had the power to force-feed anorexic people in order to prevent them starving themselves to death. It’s a desperate situation, but when a person is so entrenched in an illness that constantly tells you that food (and sometimes drink) is the enemy, you become paralysed with fear and will do anything, no matter how out of character, to avoid it. Many of the nursing staff I have spoken to about this have told me that they have struggled more when trying to restrain a frail, skeletal anorexic person than a fully grown burly male.
The argument for force-feeding is that the person in that position is not capable of making that decision for themselves, and so (lawfully) it is in their best interests. I would worry how many more deaths we would have from anorexia if it was not allowed.
But should ‘E’ be forced to continue a life (if you can call it that) that she no longer wants to live?
The question it comes down to really is over whether treatment is futile when a person is so far down that line of self-destruction.
I still haven’t properly considered the possibility of futility of treatment because I have no ability or qualification to do so, but it adds an extra dimension of confusion to an already baffling case. The available academic work I’ve come across, some of which is cited in my previous post, seems to suggest that they think there is always hope, but I was certainly struck by the extremity of this case relative to the ones they were often commenting on.
Moving on, Burton says;
I have never been as ill for as long as ‘E’, and even if I had, I would have no place to say whether this decision is right or wrong – nor do any of us.
and I think, in agreement, that’s where I’ll leave off commenting on the issue. I have never had to face anything like the struggles that ‘E’ has. I have no answers. What reflecting on this has left me with, however, is an increased sense of my gratitude for being fortunate enough to not have to face a daily trial like that. With thought to ‘E’, I’d readily echo Burton’s conclusion;
My fingers are crossed.
NB: I have toyed with whether or not to post this, because I can offer no firm conclusions. As such, please be aware that the conclusion is effectively “I still don’t know what to think.”
In briefest summary – a 32 year old woman with severe chronic anorexia nervosa currently has a BMI of 11.3, well below the threshold labelled ‘dangerous’ (14). She needs urgent “refeeding” treatment, which would involve a commitment to hospital for an extensive period of time. The outcomes associated with this treatment are questionable, but there is a tangible and definite possibility of recovery. She explicitly states that she does not want the treatment, accepting that she will die as a result, and has maintained this for some time, even taking out 2 advanced executive orders against life-preserving treatment. The case was handed to a judge for adjudication, and he ruled that she is not capacitous – she lacks the ability to make these decisions for herself (and did so when she made the advanced orders) – and therefore her wishes should be overruled and she should be committed to hospital.
Williamson’s conclusion is that the judge is likely wrong;
it’s really not clear what it means to say an agent lacks autonomy in such situations. She feels unbearable pain and does not wish to be held down against her will. She has convictions on this question as strong as our own. But someone else decides that they count for nothing, and so she is to be treated like a child. I think force-feeding her is, ultimately, wrong.
and I have a lot of sympathy with this conclusion. Indeed, it seems horrifying to commit somebody to hospital for a year or more and force them to undergo clinical treatment and therapy against their wishes – it has much in common with torture.
For me, the important question is precisely why the judge has deemed her incapacitous. If it’s because she has anorexia, simpliciter, then this is wrong. Bryden et al (2010) report on a similar case in Ontario;
The decision asserted clearly that “capable people have the right to take risks, to make mistakes, and to make choices that others might consider unreasonable.” The Court further underlined that “the presence of a mental disorder should never be equated with a lack of capacity.”
The test of capacity that has emerged in Ontario is two-pronged: a patient must be found to be able to intellectually understand the treatment information provided to him or her, and must be able to appreciate the reasonably foreseeable consequences of the treatment decision or lack thereof. This latter term, appreciate, has been discussed at length in several decisions reached by the CCB as well as by the Supreme Court of Canada in the Starson decision. Importantly, it is the failure by eating disordered patients to fulfil this second prong of the test that has been most frequently cited by CCBs as the reason for upholding the clinicians’ findings of incapacity.
It appears that much the same has occurred in the present case. As Williamson points out, there can be little doubting that the judge was assured that the patient understands what is going on. This much is apparent;
The judge noted that the patient’s wishes and feelings ‘are not the slightest bit less real or felt merely because she does not have decision-making capacity…..particular respect is due to the wishes and feelings of someone who, although lacking capacity, is as fully and articulately engaged as [the patient].’
So it appears that the patient has been deemed to be aware, but incapable of fully “appreciating” (whatever that means) the expected outcomes of refusing treatment. Right or wrong, this is not uncommon. Carney et al (2006) survey occurrences of coercion in the treatment of severe anorexia nervosa, and a few of their conclusions sound very familiar;
- ‘coercion is most likely indicated for patients with more chronic histories (prior AN admissions)”
- ‘the presence of [comorbid psychiatric diagnoses] [adds] significant weight to the clinical indications for seeking involuntary mental health commital’
- ‘a critically low BMI is associated with a likelihood of a coerced admission’
The question, then, is why are additional psychiatric complications and a low BMI deemed good reasons by the medical profession for committing someone to treatment against their wishes? Why do these complications render it acceptable to deem a patient incapacitous, and categorise and discard their wishes as unreliable?
The best I can find from some digging is the following from Kerem and Katzman (2003);
Studies using computed tomography and magnetic resonance imaging have demonstrated changes in brain structure in the low-weight stages of AN. In addition, functional neuroimaging techniques have demonstrated altered brain metabolism. Debate continues as to whether these brain abnormalities are fully reversible with weight restoration… To date, some preliminary evidence suggests that reported cognitive deficits in patients with AN may be associated with structural brain abnormalities.
It seems plausible that in Kerem and Katzman’s “low-weight stages” (i.e. when BMI has regressed to a severely low position) the altered brain metabolism and associated cognitive deficits could impair the patient’s capacity to make effective decisions.
If I consider a parallel situation, where I am told that I will develop a severe form of chronic condition ‘C’, which will cause me much long-term suffering and from which I will have a mediocre (but not negligible) chance of full recovery, and that at one point down the line it will hit rock bottom and I will undergo physiological changes which will leave me on death’s door but unwilling to accept help, I just about think I would want to be coerced into accepting help.
The gaping question which still has no satisfactory answer is whether we can really assume that these physiological changes are the true reason why the 32 year old woman with severe, chronic AN doesn’t want assistance. Reading around has alleviated my concerns a little – there does seem to be evidence, research and precedence. But another thing which has struck me whilst reading is that the case we’re talking about here is extreme – in other cases, physicians report an “ambivalence” or “indifference” to life, rather than what appears to be a downright refusal of it here.
Case definitely not closed.