What Alfie Evans tells us about end-of-life care and futility
May 9, 2018 (LMS Chairman) – I have been reading the key legal judgement of the Alfie Evans case: a long document, but an interesting one. It emerges, for example, that Mr Justice Hayden, whose judgement it is, is not able consistently to use an apostrophe correctly. But another piece of poor style struck me more. Reporting the views of one of the doctors, Hayden remarks that, in this doctor's view, 'Alfie's prognosis is futile.' (para 25).
Literally, this means that the prognosis this doctor had made was a waste of time: it wasn't going to achieve anything. On the contrary, of course, the prognosis was not futile: Hayden found it very useful. What he actually meant, presumably, was that the prognosis for Alfie was poor, and yet I think Hayden wanted to convey more than that by his strange use of the term 'futile'. He wanted to convey the idea that it was Alfie's continuing life which was, in some sense, futile.
It is common enough to say that medical treatment is futile, and this phrase is also found in the judgement. But we should be alert to what is going on in even this phrase. Futility is a property of means in relation to a given end. It is futile to try to build a house out of rice-paper. It is futile to defend oneself against an assailant with a rubber sword. Those means chosen to those ends are not going to do the job successfully. Continued artificial ventilation, food and water was not going to restore Alfie to health. Nor, on the balance of probability, were the treatments offered by the Bambino Gesu hospital in Rome. This does not make them absolutely futile, however, since there may be another possible goal to which they could be effective means. This is the prolongation of Alfie's life. This runs into the objection, however, that on Hayden's view such a life as Alfie had was itself futile.
One might assume that this would mean that Alfie's life was characterised by suffering, but on this topic Hayden got himself into a muddle. The doctors agreed that Alfie was very probably not capable of any kind of perception or sensation, including suffering. It is a key component of the judgement that Alfie was not responding to stimuli, apart from spinal reflexes; much space is occupied by this issue. According to Hayden, it follows from this that Alfie's life is not worth prolonging. But when it came to the plan to move him, it is the possibility that Alfie could feel pain which is suddenly given salience. If this possibility is a serious one, however, then Hayden's determination that Alfie could not derive any positive comfort or pleasure from his parents and others is called into question. You can't have it both ways.
Similarly, Hayden seems confused about what Alfie's quality of life might be. In a remarkable paragraph, he rejects the view of the 'Guardian', the state-appointed lawyer who is supposed to argue on behalf of Alfie, that 'his life lacks dignity' (para 54). To his great credit Hayden not only visited the hospital but took in what he witnessed: 'The atmosphere around Alfie was peaceful, dignified and though some might find it surprising for me to say so, very happy.' Despite this, however, Hayden decided that it was best if Alfie's earthly existence should not be prolonged, even by his being fed.
Those who care for the dying in hospices take a very different view. They understand that the people they care for are dying, but also that this is a stage of life with its own value and importance. What we do for people at this stage in their lives expresses our valuation of them as human beings. We recognise their inherent dignity by treating them with dignity. This does not cease to be the case if they are unconscious, even if they are not to regain consciousness. Their lives remain important because they are important. They may not be able to do very much, but that is not even the beginning of a justification for us to take aim at what they do have left, life itself, and take it away from them.
Care of the dying is not about prolonging life at all costs. When we say that we are referring to the cost of suffering, consciousness, medical resources, and money. Treatments which will not modify a disability or restore function or health are futile, when they aim at those goals and fail to deliver. If, however, we are going, like the currently debased English law, to lump feeding and hydration in with medical treatments, we must be careful about how to use this word 'futile'. It is not the intended function of food and water, under normal circumstances, to restore health; it is their function to nourish a living person. In some cases they do indeed become futile, as means to this end, in the care of a dying person, but this does not appear to have been so with Alfie.
Hayden reports a phrase of Tom Evans which he did not appear to understand. It was that when other possibilities are exhausted, 'Alfie should be allowed home to die "when he decides to".' (para 40). His father wanted him to die a natural death. It's not much to ask.
His continued life, the precious days or weeks he might have spent in the dignified and happy atmosphere Hayden described, would not have been without value. The extraordinary lengths England's medical and legal establishment went to in order to deprive him of them are an indictment on the whole nation.
This is part of a four-part series on the Alfie Evans case:
Published with permission from the LMS Chairman blog.
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