In defence of just being

Our society has difficulty, it is often said, in accepting the value of “being”, as opposed to “doing”. This is starkly evident in how we deal with patients in the state known as “vegetative”, a term the Pope describes as ‘certainly not the most felicitous when applied to human beings’. Do we value the sheer humanity – the sheer presence - of those who show no sign of response? Or are we so disturbed by their presence, their utter inability to communicate, that we simply do not want this presence to continue any longer?

Norman Ford does not, one would hope, support the withdrawal of tube-feeding for this reason. As he says: “Life is a basic good of the patient that should never be deliberately terminated”. Yet just a few sentences earlier, Ford asks if it is not “lack of respect for a patient’s inherent dignity to be subjected to years of unconscious life” sustained by tubefeeding.

Is it tube-feeding itself that Ford sees as lacking in respect? Apparently not, since he has no problem with providing it for patients in acute care, and for conscious patients who accept it. Rather, it is what tube-feeding achieves - the “subjecting” of the patient to “years of unconscious life” - that Ford finds repugnant.

But it is not just unconscious life that Ford regards as harmful to prolong. Noting that some patients diagnosed as in PVS may in reality be conscious, he describes as “psychological torture” the indefinite tube-feeding of such patients. He also speculates that the conscious patient might not otherwise experience hunger, due to the “natural dying process”.

We should be wary of predicting the responses of those who are unable to communicate. One such patient signaled her desire to live just three days before a court was due to hear an application for her feeding to be withdrawn. Another patient who partially recovered was severely disabled, but apparently euphoric.

Nor should we be confident that brain-damaged patients, particularly those who are not, in fact, dying, are unable to experience hunger or thirst. There is evidence that thirst, at least, can persist in those with massive damage to the brain. The fear of dying of thirst while one is suffering but unable to communicate cannot be dismissed.

More importantly, if the motive for withdrawing tube-feeding is to hasten death, this is indeed, as the Pope has indicated, euthanasia by omission. In the landmark case before the British courts of Tony Bland, three out of five law lords who judged the case described this as the motive. The “morally and intellectually misshapen state” (as one law lord put it) of a law which allows deliberate killing by omission, but not by “positive act”, is still very much in evidence.

What of cases where our motive in withdrawing (or withholding) tube-feeding is not to hasten death? To foresee that death will be hastened by what we choose is not the same as choosing to hasten it: the principle of double effect protects us from such unworkable suggestions. In this context, Ford asks why it should be acceptable to withdraw respiration (not normally needed by PVS patients) but not to withdraw tube-feeding.

Giving food and drink is, however, part of non-medical, everyday care for many people, in a way that “oxygenating” people is not (at least after birth). Infants and toddlers are routinely spoon-fed, as are disabled people of all ages. Tube-feeding is a simple, low-tech extension of this kind of assistance: like the use of catheters, it is basic nursing care. It is hard to see why pouring food down a tube – particularly one which has already been inserted - should only be appropriate if some “higher good” can be achieved for the patient. In any case, PVS patients often retain some ability to swallow, so that spoon-feeding would presumably need to replace the more convenient tube-feeding if that were withdrawn.
 
Ford is to be congratulated on his recognition, shared with the Pope, of the humanity of PVS patients, and on his desire in principle to reject the deliberate ending of their lives. But his arguments in favour of withdrawing tube-feeding are not so benign, and those which refer to the undesirability of prolonging life as such are rather worrying. As Ford says himself, all human lives are worth living; it follows that the extension of severely disabled lives is not something bad per se, if the means used are reasonable. Death is “natural” only in the sense that illness and pain are “natural”: these are “natural evils” which should often be prevented, whatever good fruits they may bring. To offer, at very least, basic nursing care to those who are persistently unconscious powerfully signals the value we place on their “being” – their presence in the world.