Scripts for Modern Dying: The Death before Death We Have Invented,the Death before Death We Fear and Some Take Too Literally,and the Death before Death Christians Believe in

The Death before Death We Have Invented

When the Old Age Pension was introduced in its modern form in the United Kingdom in 1945, it was available to those reaching the age of 65. Since life expectancy for a male was 64, and just short of 70 for a woman, very few could expect to draw their pensions for very long. (Life expectancy in the US at that time was very similar.) But medicine’s success in dealing with many of the acute causes of death (such as kidney failure, septicaemia and pneumonia), and more recently in either curing certain cancers or holding them in remission for increasingly long periods, has now created a much longer old age than anyone reasonably anticipated in 1945 – presently in the UK, life expectancy is around 80 for a man and 84 for a woman. ¹

This seemingly good news is not, however, simply good news. For very many this new old age will be a period of slow decline and increasing debility, such that we might say that the second half of the twentieth century invented a new form of dying—not the sudden and unheralded death of the unexpected heart attack, nor the anticipated death with its last hours and days following the onset of some particular infection or disease, but a new long dying. Saved from the early deaths of 1945 and before, 40 per cent of us can expect to ‘slip into protracted dotage and feebleness, needing protracted long-term care’; our ‘trajectory towards death’ will be ‘gradual but unrelenting, with steady decline, enfeeblement, and growing dependency, often lasting a decade or longer’. ² We might dub this new mode of dying, different from either the classic unheralded sudden death or the heralded but bounded deathbed scene, dwindling to death.

We used to die either suddenly or relatively briefly, with a bit of warning; now we dwindle to death. But notice two related features of this new long dying.

First, the two most culturally prominent scripts for dying (those of euthanasia and the hospice) are not obviously applicable to the dwindling-to-death which is increasingly a feature of the long old age of the twenty-first century in affluent countries. The old scripts, around which there is so much cultural contestation—even though in certain ways they are remarkably similar, sharing an overriding concern, I think, for the preservation of the agency of the patient—are seemingly irrelevant to the long dying of our time. Hospices promote and enshrine many valuable practices and approaches to dying—but they serve those who are recognisably dying, not merely dwindling. Similarly euthanasia, whatever one says about it in other cases, doesn’t serve as a script for extended periods of slow decline, unless, of course, one holds to the rather drastic thesis that euthanasia is the right answer to the first sign of any diminishment of any faculties in early old age.

A second point follows. We seem to lack any governing script for the long dwindling of our era which is, for very many, a bleak experience. A sociologist notes, in measured academic terms, that ‘In late modernity it appears that the process of aging is difficult to incorporate as a meaningful and fulfilling part of social life’. ³ But the less measured way of saying what it means to be unincorporated in, or more accurately, excluded from, meaningful and fulfilling social life, is just that the aged are commonly subject to a form of social death. According to Age UK, 5 million older people in the UK claim that television is their main form of companionship. 600,000 people leave their homes only once a week or less. And a million people say that they go for an entire month without speaking to a friend, family member or neighbour. We have invented for our sequestered elderly a new long dying, but have made of this, in virtue of the social death which late modernity imposes on them, a veritable death before death. ⁴

The argument for or against euthanasia is one that seems able to gain great attention, and it must be settled; but the question of the merits of euthanasia, or an alternative script for the clearly dying, is something of a minority matter compared with the much more general and pressing need for a script for those who are dwindling to death.

The Death before Death We Fear (and Some Take Too Literally)

If the plight of many of the elderly in late modernity is to experience the death before death we have created, this is not the death before death that is culturally most remarked upon. We might think of this second death before death as the one we fear and believe in, in a rather too literal-minded fashion.

Amongst the faculties we may lose in decline towards death are mental faculties; the risk of dementia, most commonly Alzheimer’s disease, increases with age. And it is the loss of faculties to dementia which is, of course, the aspect of our long dying that is commonly judged most fearful. Alzheimer’s has, as one commentator says, ‘likely become the most dreaded disease of old age’. ⁵ The Alice of the book Still Alice puts it crisply when, after her diagnosis with Alzheimer’s, she announces ‘I’d rather have cancer’. ⁶ Cancer has slipped in the league of dreaded diseases, and Alzheimer’s has taken the leading spot, now variously represented or figured as an ‘unbecoming of the self’, ⁷ the ‘loss of self’, ⁸ a ‘death in life’, ‘never ending death’, ‘the death of the person’, a ‘living death’ or a ‘death before death’. ⁹

The popular portrayal of ‘the tragedy of Alzheimer’s’ as a ‘death before death’, as a ‘loss of the self’, and so on, makes certain assumptions, of course, about the nature and significance of the losses characterising dementia. These assumptions are both empirical (about how the disease goes) and conceptual (about what the supposed losses mean). Still Alice, to mention that book again, makes a very important, but as it turns out, much too limited point, about our need to be critical of assumptions about the disease, some of which are foisted on us in these figurations of Alzheimer’s. As the title serves to insist, Alice is still Alice even when she has Alzheimer’s—something driven home to those amongst her family who doubted her continued selfhood by her addressing a conference on Alzheimer’s and thereby replicating the performance of the old Alice, who as a Professor at Harvard was known for her reasoning, arguing and discursive skills. The general point is that continuing capabilities of those suffering from Alzheimer’s may very definitely be occluded from view by the very assumption of the ‘death of the subject’ which is presumed to be the tragic consequence of Alzheimer’s—indeed a radical loss of capabilities may very well be a consequence of certain regimes of care which actually precipitate a loss of faculties in patients with dementia by assuming their absence. Alice may still be Alice, even with Alzheimer’s, if the subject is sought out and protected; but she will definitely not appear as still Alice if Alice is assumed to have disappeared. Alice may, if supported and nurtured, survive in certain care regimes, but not in others. Thus the two sets of assumptions, about the progression of the disease and the meaning of the losses it entails, are plainly not neatly separable, but can conspire with each other to produce the very outcome which is allegedly feared.

The point that one should not prematurely discount the agency of the Alzheimer’s patient, for all that it needs to be made, should, however be made a bit more firmly or fully than this.That Alice is still Alice when she manifests, even under the affliction of Alzheimer’s, the cognitive and discursive skills of the old Alice, doesn’t after all take us very far in critiquing the figuration of Alzheimer’s as ‘death before death’. We need, that is, to ask whether someone might still be Alice, or whoever, even if she cannot replicate the cognitive skills of the pre-dementia Alice. To put it another way, the book, for all its merits, risks perpetuating a culturally influential, yet very limited notion of what constitutes the presence or continuation of selfhood, if that presence or continuation is established only by the maintenance of certain particular (and rather high) levels of cognitive accomplishment or self-awareness.

If we are to treat the ‘death before death’ rhetoric in a properly critical fashion, we need to think a little bit harder about what it is to be still the people we are. That hard work would require, of course, making some careful distinctions which the rhetoric rather elides—between selfhood, subjectivity, personhood, self-consciousness and so on. But short of undertaking that work here, we can at least notice that for all that the ‘death before death’ phraseology strikes a chord (it marks, after all, something of a sense of extreme loss which carers feel in their changed relationships with those affected by dementia), there is nonetheless a perfectly regular and familiar counter-discourse which signals that carers don’t generally take these figurations of loss in an utterly literal fashion.

A paper by the anthropologist Janelle Taylor nicely makes this point by contrasting the anxious enquiry about her mother ‘does she still recognise you?’—as if this might be a crucial test of something—with her own sense of the importance of the fact that she still recognises her mother no matter her losses. ¹⁰ And this practice of continuing recognition is compatible, in the case of much discussion of illness, with talk of radical discontinuities, loss or even seeming absence. Everyday discourse handles these two different registers without any great difficulty, and certainly without jumping to any high flown conclusions about the utter death of the person. When someone is mildly out of sorts we say ‘she’s not herself’. In a more serious case, perhaps after someone has suffered a stroke, we say that ‘he’s a shadow of himself’, ‘He’s not the man he was’. After visiting someone for the first time in such a case, we may well say, in telling the story, ‘I didn’t recognise her’. But of course, that ‘I didn’t recognise her’ is meant rhetorically—at most it means I didn’t recognise him ‘at first’.

It is from this family of phraseology that the modern construction of Alzheimer’s is built, with its heightened rhetoric of ‘he’s no longer there’. But I suspect that some careful ethnography (of the kind which Taylor begins) would show that this really is rhetoric for most people, and that daily carers find the other through subtle means, and in subtle ways, even when the rational agent has seemingly departed the scene.

This is perhaps an informal way of saying what James Laidlaw says more carefully in a recent book when he notes that our understanding of identity is extremely ethnocentric and thus unethnographic—meaning by ‘our understanding’, the understanding that features in academic discussions of various kinds. Laidlaw further complains that the ‘us’ of us/other contrasts is typically under described, conceived as a Cartesian self, or some philosophical modulation of such a self. Thus what Laidlaw calls ‘the complete absence of anthropological responses to the many inevitably Eurocentric overviews and histories of morals or of the ethical subject published by historians, philosophers, and others, from Nietzsche’s Genealogy of Morality … through works such as Charles Taylor’s Sources of the Self or Rose’s Governing the Soul’, ¹¹ leaves us blind sided, so that ‘anthropologists have had to keep remembering or rediscovering that there is no simple opposition between the modern Western individual and the traditional relational self everywhere else’. ¹² The same point holds here—the sort of practice to which Janelle Taylor witnesses rather robustly discounts the literal understanding of the figuration of Alzheimer’s as ‘death before death’ which might appear in an argument in a textbook in medical ethics. And it does so not because our practices are confused, but rather because they presuppose a continuation of our identities notwithstanding the losses and discontinuities of dementia, losses to which the rhetoric is in danger of attributing too much significance.

The Death before Death Christians Believe in

Much discussion about Alzheimer’s—and mine thus far—is addressed chiefly to care givers, or to those who think about care giving, here encouraging or inviting them to continue to reckon with the persistence of the other, even where there is severe cognitive impairment; and discouraging them from too quickly positing a rather literally understood ‘death before death’ just because the patient can’t give Harvard style lectures. We might wonder, however, what word, if any, ethics has for those who are diagnosed with Alzheimer’s, not just for those who care for them. How can we understand such a condition in the unfolding of Christian lives? That is, can we think about dementia in such a way as to provide the basis for a critical praxis not just for carers, but for sufferers too?

There is no doubt that a diagnosis of Alzheimer’s would seem to anyone daunting to the point of being overwhelming—hence the ‘I’d rather have cancer’ comment in Still Alice. But it is surely worth pausing to consider in what way precisely this diagnosis threatens or frightens us.

The problem with our long dying in general is just, of course, that it seems like death in slow motion: we are totally undone by death, but in our long dying, we are undone bit by bit. The purposeful and capable adults we have been, lose capacities one by one, moving backwards to the dependencies we associate with childhood. A diagnosis of Alzheimer’s adds to those losses the loss of cognitive capacities which have been central to our sense of ourselves, our identities and central to our engagement with the world. Facing up to the involuntary surrender of our capabilities, and seemingly our very selves, is naturally hard.

The theme of a surrender of the self is not, however, without precedent in Christian tradition. I will mention two locations of that theme which may help us to think constructively about a moral practice for sufferers from Alzheimer’s, though a proper examination of these ideas would take more space than I have here. First, the theme of self-surrender or abandonment is found in elements of the mystical tradition. Could the voluntary self-abnegation of the mystical tradition provide modes of thought helpful to those who are contemplating the involuntary diminishment of the self in Alzheimer’s? In the second place, baptism has been conceived as involving a certain displacement or death of the self. Perhaps there are relevant directions here for sufferers from dementia.

A difficulty with the mystical tradition is just, of course, that the loss of the self in that tradition typically doesn’t mean what it may appear to mean at first sight. Loss of self in a variety of mystical practices is very often for the sake of greater attentiveness. It is not so much a loss of the self, then, but a concentration of the self by means of a dispelling of certain distractions for the sake of great openness to God. But this practice is, to use Foucault’s terms, very much a technology of the self, and as such provides no very promising model which could relate to the progress of Alzheimer’s. Technologies of the self are about what one should do with oneself, what one should make of oneself, in a self-styling or self-mastery that is characteristic of certain modern ideals. But insofar as the ‘losses of the self’ in the mystical tradition are actually achieved by self-direction, they provide no helpful model for Alzheimer’s patients, who, as the disease advances, have diminishing capacity for self-styling, self mastery or self-making.

There is, of course, another side to the mystical tradition, broadly conceived. Charles Taylor interestingly touches on this in an aside in Sources of the Self, when he mentions that ‘we are ethnocentric, or at least too narrow in our understanding and sympathy, if we take it as axiomatic that a self is what we ought to want to have or be. There are influential spiritual outlooks which want to have us escape or transcend the self. Buddhism is the best known.’ ¹³ But so, too, as Moran adds in commenting on Taylor, there are the outlooks of those mystics, such as Meister Eckhart, ‘who had no aspiration to be a self’. ¹⁴ What Eckhart meant is, of course, a matter of no small difficulty—but it is at least worth identifying here a tradition which holds the loss of self (and not simply the self’s re-direction) as a spiritual or moral goal, and which thus seems to provide a possible point of enquiry in relation to Alzheimer’s.

More immediately promising, however, for developing critical thought and practice in relation to Alzheimer’s, is attending to the death before death which Christians have always believed in, namely that which occurs in baptism.

‘Do you not know’, asks Paul in Romans 6:3, ‘that all we who were baptized into Christ Jesus were baptised into his death?’ Baptismal rites variously adopted and adapted this imagery of death and dying, intertwined with the theme of birth, to produce complex interplays of notions of stripping away and putting on, of losing and gaining. ¹⁵ The Book of Common Prayer, for example, includes in its rite the prayer that God may ‘grant that the old Adam in this Child may be so buried, that the new man may be raised in him’, that ‘all carnal affections may die in him’, and that as the child has been ‘buried with Christ in his death’, so he may be ‘made a partaker of the death of thy son’. ‘The sign of baptism speaks of death’, notes Karl Barth in his commentary on Romans, citing Luther’s characteristically robust instruction and injunction on the theme:

Your baptism is nothing less than grace clutching you by the throat: a grace-full throttling, by which your sin is submerged in order that ye may remain under grace. Come thus to thy baptism. Give thyself up to be drowned in baptism and killed by the mercy of thy dear God, saying: ‘Drown me and throttle me, dear Lord, for henceforth I will gladly die to sin with Thy Son’. ¹⁶

In the early church Christians, associating baptism and death, came in turn to see martyrdom as a second baptism—and this surely provides a point of departure for further reflection here. Might we even come to speak of the possibility for those diagnosed with Alzheimer’s of accepting the path before them as a vocation, as the saints accepted martyrdom—that is, as accepting in the death of the self which they face, a second baptism? Following some such path, it may be possible to resist the construction of this supposed ‘death before death’ in the tragic, high-flown terms beloved of media discourse.

Conclusion

We lack a script for Alzheimer’s—as we lack a script, in general, for our long dying. A script is sorely needed, for both Alzheimer’s in particular, and for dwindling in general—and not only to guide carers, but to orient and sustain those who will undertake this new way of dying. According to figures from the US, some 700,000 dependent patients are in long-term care facilities, facilities that are barely regulated in some places, and where dehydration is a regular and woeful symptom of lack of sufficient care. The state of elderly care in the UK is no more heartening. A new Ars moriendi is urgently needed if the long old age we have invented is to become something other than the rather bitter experience we have made it.