Biology and personhood

One useful distinction can be drawn between two different versions of death and dying—‘personal’ death and ‘biological’ death—a distinction that has largely come into focus as a result of improvements in the medical technology of life support. In a recent book,2 Sumner defines biological death as ‘the irreversible cessation of the integrated functioning of the organism’; personal death, by contrast, is the irreversible cessation of whatever ‘psychological states or capacities are constitutive of a person’. In many cases, the link between biological and personal or psychological death will be intimate, but where, for example, a patient is in a MCS, the psychological and cognitive capacities that are ordinarily constitutive of persons can be largely absent, whereas biological life can continue unimpeded for many years. The distinction is at its most stark in relation to patients in a vegetative state (VS) where the individual retains no awareness whatsoever. The separation between these two aspects of an individual's life can occur abruptly, following an accident or acute illness; in other circumstances, it can emerge gradually, attendant, for example, on the cognitive decline associated with degenerative diseases such as Alzheimer's. The strong challenge presented by the question of precedent autonomy largely arises when the expressed interests of the former person conflict with the contemporaneous interests of the biological self which has to a greater or lesser extent outlived the person previously inhabiting it.

The identity question

One of the issues that the possible divergence of personal and biological selves can give rise to is the question of identity. It is presumably difficult to predict in advance of losing capacity how we will feel about the value of our lives—what it is that we will value and for what reasons—once that capacity is lost. It is quite plausible, for example, that, as mental capacity declines and former interests that require more complex mental functioning dwindle, new interests emerge or take priority. The autonomy interests that we express when we have capacity may therefore conflict with what we might call our welfare interests when capacity is lost. I might now be appalled by the thought of living without memory or mental faculties in a world of soft chairs and daytime television, but in the grips of Alzheimer's, I may derive demonstrable pleasure from precisely those things. Furthermore, although traumatic brain damage may lead to an abrupt shift from ordinary to significantly impaired consciousness, in diseases of degeneration the decline of capacity can be gradual. In these more familiar circumstances, our interests and our sense of what we value about our lives can migrate slowly, even imperceptibly, enabling us to acclimatise to circumstances, the sudden arrival of which we might find intolerable. As an advanced Alzheimer's sufferer, am I therefore the same person, in the sense of having recognisably the same interests, as I was when in robust health and in possession of all my mental faculties? It is again quite plausible to imagine a circumstance in which the apparent desires of an incapacitated adult could directly contradict earlier, autonomously formed wishes—for example, the desire for continued life. Why should my former wishes, based upon values and desires I may no longer recognise, be determinative? Certainly any treatment decision likely to have the result of shortening life in these circumstances is not only necessarily a grave decision, but one that those caring for the patient might struggle to enact.

Critical and experiential interests

The challenge presented by the question of identity in these contexts has led Ronald Dworkin to introduce an influential distinction between two kinds of interests that individuals have: critical and experiential. Experiential interests refer to those things we do simply because we get pleasure from the experience of doing them—reading, hiking, eating, playing sport—and some of these kinds of interest, it is plausible to imagine, can remain with us even when the capacities that support personhood are severely diminished. While the pleasure that arises from these things is essential to a good life, the individual pursuits as good in themselves need not be. As Dworkin points out, somebody who gets pleasure from eating well rather than playing football is not thereby making a mistake. It is the experiential pleasure that matters here, not, within reason, the source of the pleasure itself. Where neurological deficit may mean that one source of experiential pleasure is not available to us, others may nevertheless come, at least in part, to substitute for it. I may no longer be able to read the books of philosophy that once meant so much to me, but the interest I take in eating, or in listening to music or sitting in the sun, may be undiminished.

In addition to these experiential interests, we have what Dworkin calls critical interests, interests that, in his view, ‘it does make (our) life genuinely better to satisfy, interests (we) would be mistaken, and generally worse off, if (we) did not satisfy.’3 That is, in addition to the toll of pleasure and pain in our lives, we have an enduring interest in the shape and form of our life, in its internal meaning and coherence, and in our desire to ensure that our lives are more than just a disconnected sequence of days. The concept of critical interests is a complex one which sees the value of life not in some aggregation of pleasures and pains but as resting in an individual's settled views on what constitutes for them a good life, including the ending of that life. Critical interests are therefore deeply tied to the value of personal autonomy. As Dworkin puts it: The value of autonomy…derives from the capacity it protects: the capacity to express one's own character—values, commitments, convictions…in the life one leads. Recognizing an individual right of autonomy makes self-creation possible. It allows each of us to be responsible for shaping our lives to our own coherent or incoherent—but in any case, distinctive – personality…We allow someone to choose death over radical amputation or a blood transfusion, if that is his informed wish, because we acknowledge his right to a life structured by his own values.4

In the more difficult cases, the cases where current experiential interests appear directly to conflict with earlier statements or decisions that are expressive of critical interests, the judgement will therefore require adjudication between them. As we go on to see, it is not merely a simple question of whether we prioritise one set of interests over another. For even if a decision is made to prioritise critical interests, there will also be important evidentiary issues—what kind of evidence is required before we can say that an earlier decision was in fact expressive of autonomy and should therefore trump contemporaneous welfare interests?

The evidentiary question

From its inception, the MCA was widely seen as autonomy-promoting legislation; yet decisions made within its framework to keep people alive in an MCS have been criticised as putting excessive emphasis on very limited contemporary experiential interests, thereby frustrating the autonomy it was designed to promote. The MCA does enable people to make advance decisions that would be applicable in these circumstances, therefore protecting the anticipatory decision-making rights of those who both desire, and are able, to make proper use of them. Any challenge to the decision in M must, however, directly address the evidentiary question: what quality of evidence, other than that provided by an advance decision, would constitute sufficient proof that the individual clearly wanted the decision to be respected? If the issue is respecting autonomy, then the principle ordinarily requires that consent given contemporaneously is informed—that is, it is based on an appropriate understanding of the nature of the decision and its likely consequences. Consent given in advance, particularly long in advance, may struggle to meet these evidentiary—and therefore autonomy-respecting—standards. When a competent adult makes a contemporaneous refusal of life-sustaining treatment, particularly strenuous efforts are often made to ensure that the individual fully understands both the nature and the consequences of the decision. Again, respect for the patient's autonomy requires it. In the absence of an advance decision, why should any less rigorous standard be applied when capacity to make the decision is lost?

Reference to the sanctity of life can be confusing. It is more helpful to recognise that the courts acknowledge, and will ordinarily seek to protect, the experiential interests of adults who cannot promote those interests themselves. Some of the criticism of the judgement in M might arise from a visceral sense that people would not like to be in an MCS. A movement from fully autonomous life to minimal consciousness is a considerable deprivation, and few would countenance it. But minimally conscious people do have interests, and the justification for a decision that may foreshorten their lives has to be a strong one. The law has provided a mechanism for people to make that decision for themselves in advance. But in the absence of such a mechanism, the courts have shown themselves reluctant to make such a grave decision on their behalf.