By Charles Foster

In a recent article in the American Journal of Bioethics Neuroscience Clarke et al provide a welcome and sophisticated counter to much of the dogmatic literature relating to the making of healthcare decisions for a person with a disorder of consciousness (‘PDOC’). They take into account many factors that are often ignored or sidelined. The article can be summarised as follows: (a) We have no real idea of the sort of life, if any, experienced by a PDOC; and consequently (b) We can offer no clear algorithm for decision-making.

Those observations can be generalised to many other domains of medical decision-making. We have no satisfactory understanding of the nature of consciousness itself, and accordingly any criteria based on consciousness used to determine how a patient should be treated will inevitably rest on a number of unverifiable assumptions. And any algorithmic approach to clinical decision-making denies human complexity and implies that the intrinsically incalculable can be measured.

Yet sometimes decisions have to be made. In the case of a PDOC decisions are frequently made which result in the death of the patient. I have argued previously that the English law clearly mandates the application of the precautionary principle – embodied in a strong (though not irrebuttable) presumption in favour of the maintenance of life. This argument is not uncontroversial. The presumption in favour of the maintenance of life is the clearest and most practical acknowledgement of the epistemic uncertainties identified by Clarke et al.

If the default position (the maintenance of life) applies, the only residual question would seem to be that arising from considerations of distributive justice. Even if that is wrong, it is absurd to have a philosophically sophisticated system of triage which takes into account presumptions about (for instance) the nature and moral significance of consciousness which ignores the question of resource allocation. The resource allocation elephant fills the room.

In a world of limited resources, is it right to respect the epistemic uncertainties inherent in decision-making in relation to a PDOC by ignoring the certainty that other patients will die or be otherwise compromised by the allocation of resources to the PDOC? This, I suggest, is how the debate about the treatment of persistently unconscious patients should be framed. I propose that contrary to the conventional utilitarian analysis, the debate should often be resolved in favour of the survival of the unconscious patient.

Why? There are five overlapping reasons.

1. To cause or permit the PDOC to die, so allowing a patient not in a disorder of consciousness to live, is (as noted above) to make our quotidian type of consciousness a moral benchmark, when there is no coherent scientific or metaphysical justification for it being so. Since the goods associated with any type or manifestation of consciousness cannot themselves be weighed, they cannot be compared in any quantitative way with other types or manifestations of consciousness.
2. Even if such a comparison were possible, moral benchmarking of the sort implicit in a decision to cause or permit a PDOC to die is a form of discrimination in favour of our type of consciousness, and against other types or manifestations of consciousness. Such discrimination is ethically problematic and troublingly repercussive. If the type or manifestation of consciousness of a PDOC is (arbitrarily) deemed inferior to our own, where does one stop?
3. If some sort of qualitative or quantitative comparison of PDOC type consciousness with our own could in principle be made, it cannot as a matter of practice be done. For all we know, the PiDOC may be enjoying an enhanced rather than a truncated existence, making their death, even on a utilitarian analysis, particularly offensive.
4. The comparison of an actual PDOC with the notional beneficiaries of the funds that might be released by the death of the PDOC will always be the comparison of a real person with an abstraction. It is ethically problematic to prefer an abstraction to an actual embodied thing. Our intuitions rightly rebel at the thought of such a preference: see, for instance, the famous shift in the way that subjects make life and death decisions when they move from the arid calculus of the straightforward trolley problem to the ‘Fat Man’ variant (which involves a real person next to the subject on the bridge).

It may have been considerations of this type which, in the leading English case of Airedale NHS Trust v Bland [1993] UKHL 17 (which concerned the withdrawal of life-sustaining food and fluids from a patient in a permanent vegetative state) led one of the judges, Lord Browne-Wilkinson, to observe that judges making decisions about withdrawal should not take into account resource allocation issues or the impact of their decision on third parties. The case was argued and decided on the presumption that there were limitless resources available for the continued treatment of the patient. Such a presumption will often be unrealistic, but at least the fallacies inherent in it are simple and apparent, and therefore less dangerous than the far more complex and numerous difficulties inherent in an attempt to balance the interests of a real patient against those of abstract entities.

5. Medicine should be about the protection of the vulnerable. Medical duties should become more onerous, not less, with the increasingly vulnerability of the patient. However enjoyable their mental life, a PDOC is likely to be more vulnerable than most of the other patients who may benefit from the cessation of the PDOC’s life sustaining treatment, and accordingly, even if one disagrees with the contentions about the priority of a real over a notional patient, the PDOC should receive the treatment.

My proposals do not amount to vitalism, and so should not – or should not necessarily – attract the fire conventionally directed at vitalism. I have explicitly acknowledged that there are some situations where the presumption in favour of the continuation of life can be rebutted. This is implicit, too, in my acknowledgment that healthcare resource allocation decisions are inevitable. But it is one thing to say that the presumption can in principle be rebutted: it is quite another to promulgate a non-evidence-based set of criteria, based themselves on an arbitrary set of philosophical presumptions and biases, which purport to say how the presumption should be rebutted. Clarke et al appear to question the propriety of such promulgation. I certainly do.

Author: Charles Foster

Affiliation: Exeter College, University of Oxford

Competing Interests: None to declare