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Directions to the Undiscovered Country

Paul O’Mahoney

Advice for the Dying (and Those Who Love Them): A Practical Perspective on Death, by Sallie Tisdale, Allen & Unwin, 256 pp, £12.99, ISBN: 978-1760632700

“Let us beware of saying that death is the opposite of life,” cautioned a certain nineteenth century German philologist with a nose for mischief. “The living is only a species of the dead, and a very rare species.” As if to echo Nietzsche’s oft-quoted formula, the lead title of Tisdale’s book in its original US impression was Advice for Future Corpses. The apparent sanitisation of the title for the British market is rather an irony, given that it is part of the author’s purpose to confront a topic she insists is too often hidden, evaded or euphemised. The opening page states:

In Victorian times, children were kept away from anything regarding sex or birth, but they sat at deathbeds, witnessed deaths, and helped with the care of the body. Now children may watch the birth of a sibling and never see a dead body … many people reach the end of their own lives having never seen a dying person.

The problem of offering a practical perspective on death is summarised at the outset. “Birth and death are the only human acts we cannot practise,” writes Tisdale, and so “death looms ahead as a kind of theory.” There are no dress rehearsals for death. Dreamless sleeps will be woken from; the deaths of others do not necessarily carry instruction as to how one ought to go into that good night, gentle or raging. Practical advice then must deal with the concrete details of death; Tisdale’s book addresses both future corpses and their carers and families, and indirectly, health professionals and advocates of varying stripe. The advice is direct. The grammatical mood is usually imperative, the mood and tone of the author running the spectrum from compassionate to faintly peremptory. The book is “about preparing for your own death and for the deaths of people close to you”. A bank of experience built up as a palliative nurse makes Tisdale a singularly qualified counsellor of corpses-to-be, and allows her to lay out the various dull, uninspiring, sometimes absurd practicalities attending the business of dying while avowing simultaneously “the strange, undeniable fact that the presence of death can be joyful”.

The middle of the book is taken up with five chapters, four of which deal with the dying process; the sequence – “Last Months”, “Last Weeks”, “Last Days” and “That Moment” – describes the common psychological and physiological changes that occur as death nears. It is interrupted by “Where?”, which discusses the different settings for “that moment”. Tisdale details the changes undergone in the dying process, the general deterioration (in the last weeks “fatigue is profound”) and eventual loss of appetite and refusal of water that signals that a person has entered upon the stage which clinicians designate by the disconcertingly odd phrase “active dying”. At this point: “We aren’t simply watching or waiting for something to happen to us. We are dying, and this is a verb. An act.” (Actually, it is an intransitive verb, designating not an action but an internally caused change of state; but let the point stand.)

Tisdale has advice on recognising the changes, and on offering care for the dying (and is explicit that one must understand the commitment this entails, and the realities of what one must be ready for, including incontinence and confusion). She deals also with the common, more practical anxieties surrounding death. Pain is the most common fear, “but often the fear is not realistic. Aging and terminal illness are not necessarily painful … Research in hospice and palliative care shows that only about one in a hundred people has uncontrolled pain while dying.” On the other hand (this being an American book), “The fear of financial disaster for one’s family is real (and so are the disasters).” Close to death, a person may display what is called “terminal agitation”, sudden bursts of energy or excitement where they may shout, climb out of bed, laugh; they may carry on detailed conversations with spectral presences visible only to themselves. They frequently use metaphors of a journey, insisting they are preparing for a long one and badgering carers and others to make sure everything necessary – suitcases, tickets, passports, whatever – is ready. Finally, there are the “agonal breaths”, the last, difficult respirations of the nearly-dead, and the death rattle; then there is the corpse.

A dead body is like nothing else in the world: a carcass, hollow, an object lesson in Newton’s law – we are bodies in motion. A corpse is a body at rest … To look at a corpse the moment after death is to see in the most incontrovertible way that we are creatures of intent.

Until the 1930s, most people died at home; today, says Tisdale, about eighty per cent of deaths in America and the UK take place in hospitals or nursing homes. This is about the figure which, if the public is polled, will express a preference to die at home; but clearly only a fraction will do so. (Figures are similar in Ireland. A 2014 Irish Hospice Foundation report, Enabling More People to Die at Home, showed that seventy-four per cent of people wished to die at home; best estimates put the figure who actually do so at about twenty-five per cent.) There are disparities between urban and rural areas (more people in the latter will die at home; in Ireland, the highest proportion is thirty-four per cent in Donegal, the lowest is nineteen per cent in Dublin), and clear socioeconomic disparities: the poor are much less likely than the well-off to die at home. This latter fact is sometimes cited as another indicator of a society’s disregard of the less well-off; but Tisdale, who concerns herself with the practicalities of death, is more sanguine about the reasons.

The extended families and stay-at-home parents of the 1930s have disappeared into a maze of apartment complexes, long commutes, and extra shifts … Our image of Grandpa at home in his own bed assumes that Grandpa likes his bed, that his house is safe and quiet, and that he really wants his relatives to take care of his most personal needs.

In fact, dying at home may be wholly inappropriate: there may be little privacy; an apartment cannot very comfortably accommodate a hospital bed, which many dying patients need; and care of the dying is frankly beyond many carers, no matter their intentions. Tisdale reminds: “You can have a bad death in your own bed and a good death in an ICU.” Hospice and respite care are important also, but Tisdale insists misconceptions about both are prevalent in the US (most hospices there are private, for-profit enterprises, and some require family carers to be present at all times during a patient’s stay). Not place itself but the resources and expertise available determine good care; it depends entirely on the supports provided to the dying person and, often, to those who love them. Unsurprisingly given her professional background, Tisdale is a strong advocate for palliative services: “I wear my bias on my sleeve. I believe in palliative care for anyone with a serious illness, and I know that palliative care can provide the support needed for a good death. Yet palliative care receives a laughably tiny fraction of the money spent on medical care.” This is usually even more emphatically the case with community palliative care, which can be precisely the service that allows a person to remain in the preferred setting of their home until death.

The notion of and the very phrase “good death” is one many have difficulty with; it is commonplace in literature on dying, but is also commonly a target of polemic—not least perhaps because it is the most direct possible English translation of the Greek euthanasia, a word adopted in the seventeenth century by the philosopher Francis Bacon to mean an easeful death, free of bodily or spiritual pain (it is not unknown but is uncommon in extant Greek literature, and is invoked once in the Greek form in one of Cicero’s letters to Atticus, where it rather signifies a noble, admirable or fitting death). As it is furthermore difficult, perhaps impossible, to conceive of death, it is similarly an onerous task to tarry with the notion of what constitutes a good death long enough to make provisions for it; something in the depths of our nature protests. This is not cowardice, most likely, but simply how we are wired. Aristotle identified the end of all human action as the attainment of happiness (or “flourishing”, the broader translation of eudaimonia). This was premised on the solid observation that eudaimonia was a self-evident end in itself. We are goal-oriented creatures, but virtually all of the goals we set ourselves (professional distinction, attainment of wealth or public recognition, raising a family) are clearly means to some further end. Even where one’s actions evince concern for others (one’s children, for example), one is recognisably the ultimate beneficiary. When we ponder the idea of our dying a “good death” as an end, the mind rather revolts; though it is I to whom it will occur, “I” will not experience the death, and therefore will not be the beneficiary of whatever effort is invested in its attainment. To die well, desirable as it may seem when the alternative is considered, still does nothing to enhance one’s flourishing. (These considerations might only be another way of saying, as Tisdale does, that death can be rather boring.)

The quick definition of a good death, notes Tisdale, is something like “free of pain, peaceful, and calm”. A federal government agency even offers a definition: it is a death “free from avoidable distress and suffering for patients, families and caregivers; in general accord with patients’ and families’ wishes and reasonably consistent with clinical, cultural and ethical standards”. When we consider what we want and our expectations, however, individual preferences mean that people’s ideas diverge, and often “[presume] a degree of control that may not be possible”. Indeed, the “fantasy of a quiet leave-taking in complete control is, for the most part, just that. A fantasy. Our ideals about the so-called good death are constricting. Death is not something at which we succeed or fail, something to achieve.”

It may be better, says Tisdale, to think of a “fitting death”, rather than “glibly wishing for a ‘good death’”; yet Tisdale herself frequently has recourse to the phrase “good death”, and the fitting death – one which somehow fits the life we have lived – seems something that would require precisely the kind of control Tisdale emphatically denies we can bargain on having. “All the planning and support and advanced directives in the world won’t give you control”: at the end, it is death which is making the decisions. And yet we have a deep need for autonomy, which extends even to the dying process; and Tisdale insists we can plan elements of our death. Indeed, life inevitably is a long, ongoing preparation for the final curtain.

We spend our lives creating our future, by creating habits, learning from experience, examining our weaknesses and strengths. Our lives as we live them day by day create the person we will be at the moment of death. You see this at the bedside of a dying person. You see it in the way a body rests or fights, in the lines of the face, in the faint shadow of a smile or a scowl, worry or peace. With every passing day we create the kind of death we will have.

What can be planned ought to be; and that requires the communication of one’s wishes.

Tisdale tallies the variety of difficult communication that surrounds death: between a dying person and their loved ones or carers, between the bereaved and those who wish to console them, between a person who has a terminal illness and the professional who must apprise them of the fact. Here her advice is clear: good communication requires clarity; it is difficult under stressful circumstances (think, she says, of how one communicates an urgent matter or in an argument, how different this is to ordinary communication of information); and listening to another person is usually more important than making oneself understood. She is forward on what one should and should not say or do – and there is much that people tend to say that amounts to mere platitudes, and should not be said. If there is an exception to the “talk less, listen more” advice, it is the dying person themselves, who has a responsibility to make their wishes understood, especially to those close to them who will have to deal with caring for them during their dying and after their death. (At least the liberating aspect of dying encourages this: “If you are dying, you can say anything you want. And you can say it when you want, and to whom you want.”) The idea of the need for a broader conversation within society about dying and death is supported by “Death Cafés”, started in the UK in 2011 and adopted in other countries since (in Ireland, similar events are run as Café Conversations); the contention of this movement, if indeed it can be called such, is that despite the difficulties we have in conceiving or communicating about death, more of us in fact want to discuss and confront it than is generally suspected.

If communication is difficult, this of course is because of our natural aversion to death, what Tisdale covers under the topic of “resistance”. The fear of death is, probably, quite natural, and common to all human beings. It has even been suggested that it is our awareness of our mortality, even more than our possession of reason, that separates human beings from our animal brethren. Tisdale catalogues other fears associated with death: of autopsy or other mutilation of the body post-mortem; of waking up in the coffin (a rather common fear); of being abandoned or ignored by family when dying; we fear that when our time comes we will not know how to die, will abandon decorum and somehow embarrass ourselves. The core of the issue is perhaps the inconceivability of death. Tisdale, who has witnessed many deaths and who is frank about how this experience helps one come to terms with death, asserts that she does not herself fear death or being a dying person; but her acceptance of death is a kind of abstract curiosity, and she still admits to difficulty with accepting the truth “I will die”. The “hubris” this difficulty bespeaks is clear: you, of course you will die; but how could it possibly be that I will one day cease to exist? “How do we get ready to die? We start with not being ready. We start with the fact that we are afraid. A long, lonesome examination of our fear. We start by admitting that we are all future copses pretending we don’t know.”

The fear of death is in part the very natural fear of the unknown; but it is also conditioned. “Fear of death begins in childhood. Children are sensitive to how adults talk about everything. With our hushed deflections and whispering, we can easily give children the message that death is not to be talked about at all, that silence is the only correct response.” That conditioned element means that people from different eras, not only distant cultures, relate to death quite differently. In The Hour of Our Death, his great study of the evolution of Western attitudes toward and rituals associated with death, Phillipe Ariès identifies twin trends: a growing fear and concealment of death, and at the same time its medicalisation. Ariès speaks of “the triumph of medicalisation”, which is evident today: in clinical programmes, death is numbered among adverse health outcomes; reductions in mortality rates are common key performance indicators for acute hospitals. There is an inevitability about the medicalisation of death, as medical professionals gradually assume greater responsibility for the health of populations. Put simply, far more can today be cured, and there are far more diseases from which one should not die. Were someone in the Ireland of today to succumb to tuberculosis, this would cause shock, and be interpreted not as an individual’s ill-fortune but as a drastic failure of public health policy, of social services. Infections that today would be treated easily with antibiotics were still killing many in the early decades of the last century; as more and more diseases can be controlled, guarded and defended against (even eradicated, as with smallpox, which survives only in laboratory stockpiles), the greater the power and responsibility of the doctor becomes.

This does not explain why the advancement of medical knowledge should be attended by a growing fear of or aversion to death (Ariès writes of the advent of “the great fear”); but there is probably some causal relation. The triumph of medicalisation is one aspect of the triumph of the scientific method; and the comprehensiveness of the latter has changed our view of life and death. There was a time (as Ariès’s study shows) when life and death could be a combat; illness or death could be caused by evil spirits, the hexing of a witch or malefactions of some daemon. In the West, in the wake of the investigations of Galileo, Descartes and later Newton, belief in this “magical” element of life became untenable. Nature’s secrets were accessible, and quite susceptible of mathematical exposition. These scientific advances represented the greatest possible (and irreversible) solvent of superstition, magical thinking and folklore. The Enlightenment had begun what Max Weber famously called “the disenchantment of the world”, and the advance of the sciences brought in its train what the great French historian Lucien Febvre, in his seminal work Le problème de l'incroyance au XVIe siècle, designated “the sense of the impossible”. Once this sense was disseminated among the people, phenomena such as the “witch crazes” disappeared in short order. The witch could no longer, even in the most fevered imagination, mount her broomstick and betake herself to the Harz Mountains for the witches’ sabbath. Faced today with such a story, one would ask: what is the broomstick’s source of propulsion; and if thrust were somehow achieved, how could the contending forces of lift, drag and gravity be negotiated so as to ensure flight? How would the piloting witch’s balance be maintained? Such questions scarcely require an answer; no sooner are they posed than their object is abolished, the mechanics of the witch’s flight consigned to the realm of the impossible, and stories of witchcraft to that of the absurd.

In this climate, life and death both lost a measure of their majesty; the ideal of the conquest of nature that marked modern philosophy and science also became the conquest of human nature, including mortality – the conquest of death through its medicalisation. In these movements are the seeds of the growing fear of death, and occasional treatment of it almost as if it were something unnatural. (There furthermore is most likely a kind of brute, instinctive calculus underlying a growing aversion to death: tallying what one has to lose by dying, with increased life expectancy, there is, crudely and quite literally, more to lose. The more it is held to deprive a man of, even if we speak of quantity rather than quality of life, the greater an evil does death appear. One suspects that were we somehow to ensure that we lived healthily to about two hundred and fifty, and could stabilise the population by consensus, we might well beat our swords into ploughshares and give up the study of war’s wondrous arts.) The scientific view of man must influence not only how we live and conceive of ourselves, but how we die and the rituals associated with death, from mourning to burial.

Tisdale’s chapter on bodies walks us through a variety of the methods, some new and in the fullest sense enterprising, for preparing and disposing of corpses. It includes advice on washing and dressing a body (dead bodies, though shrunken and desiccated, feel heavier than living; the skin, “the largest organ in the body”, when dead is “inelastic and fragile at once”), embalming and cosmetic “restoration”. Burial of corpses was practised by Neanderthals, and Tisdale relates various traditions (in Jewish and Islamic practice, bodies must be buried as soon as possible, and in the latter, coffins must have holes so the body touches the earth) and innovations (bespoke biodegradable coffins, rental coffins). Bodies can now be turned into glass and worn as jewellery, or crystallised, pressed into a vinyl record or loaded as ashes into shotgun shells. Alkaline hydrolysis, long used for disposing of livestock carcasses, is now available for humans through the efforts of a Scottish company called Resomation Ltd. (The body is placed in a drum with potassium hydroxide and water and heated to 350 Fahrenheit, liquifying it.) “That I can be turned into slurry and ash in a few hours can only be a spur to self-reflection,” says Tisdale. The Swedish company Promessa offers “promession”, whereby the body is cryogenically frozen at minus 320 Fahrenheit and then vibrated to dissolve into tiny crystalline particles. One can opt, of course, to donate one’s cadaver to a medical school; one can even have it displayed, through the controversial process of plastination. The rise of novel ways of disposing of bodies is partly a response to the problem of space. Many countries reuse cemeteries after a designated time period, and cremation is today more widely encouraged, because burial grounds take up far more space.

Disposal of bodies of course is not the hiding of death; and neither are coping mechanisms such as gallows humour necessarily evasions. Tisdale is not in favour of euphemism or circumlocution such as “passed away” or “expired” to convey the fact that a person has died; but she also records some of the humorous, piquant or poetic conceits used about death which it would seem churlish to call an evasion: in Ancient Rome, it was said simply of a dead man “vixit”, “he has lived”; while the Laymi people of Bolivia say, colourfully, that a dead man “is gone to cultivate chili pepper”. In Europe’s westernmost reaches, where Athens went to die, the Kerrymen say of the recently dead that they are imithe ar shlí na fírinne: that, like some poet or sage (ten-a-penny both in Kerry), they have “gone on the way of truth”. By such notions we come to terms with the fact of our own mortality and with the finality of others’ deaths, as well as the void those deaths leave.

For, after the death, after disposal of the body and of the departed’s effects, there are the survivors and their grief. Writes Tisdale:

Grief lives in the body. MRI studies show that a grieving brain has a pattern unlike other emotions. Most of the time, an emotion lights up parts of the brain, but grief is distributed everywhere, into areas associated with memory, metabolism, visual imagery, and more. Grief can make you sick; it can be brutal, even deadly.

This has been shown by studies into the effects of bereavement on physical and mental well-being. Research done in the Karolinska Instituet in Sweden has shown that bereavement is correlated with adverse health outcomes like self-harm, hip fracture and unplanned hospitalisation. Similarly, results from the latest wave of the Irish Longitudinal Study on Ageing, run out of Trinity College, showed widowhood a greater predictor of frailty in older adults than being single or separated. Grief of course can be dumbfounding; one may realise with the loss of a close friend, for example, that the one person to whom one would have turned to unburden oneself, where humour and established rapport might salve the great loss, is precisely the person who has died. As Tisdale writes, the loss of a loved one changes the world:

Grief is the frozen moment when you pat your pocket for your keys, the pocket where you always put your keys, and your keys aren’t there. The intensely familiar is gone – not just a person, but a habit. Gone. When I do this, that happens. When I say this, you answer. When I reach for you, there you are. And then I am reaching, and nothing, nothing is there. The true has become false.

The processing of grief can be especially difficult where it is not socially acknowledged, or in what is called disenfranchised grief: “there are no bereavement fares for a best friend or business partner … [but] grief unrecognized or undervalued is real and disabling”. Tisdale’s advice in the discussion of grief comes mostly in the dehortative. Don’t ever say they’ve gone to a better place.

Because of its usually social nature and its associated rituals, grieving has commonalities, including the fact that it prepares us for our own death; but it is also deeply personal, and much that has to do with death indeed is individual. Advice will never be universal – Tisdale, for example, has been a practising Buddhist for decades, but while acknowledging how it has helped in her life does not presume to recommend it to her readers, and is free with discussion of other traditions, such as rituals in the Jewish community. (She is on less sure ground with European classical heritage, attributing to Cicero the famous sentiment from Plato’s Phaedo that philosophy is a preparation for dying, and claiming the term “resomation” is “taken from the Greek resomer, which means ‘rebirth of the body’”, where instead it is a Greco-Latin grotesque dreamed up by marketers – or “thoughtfully chosen” according to the company website – and if it meant anything it would mean “re-embodiment”, which is clearly not the aim or outcome of the process of alkaline hydrolysis.)

Having brought us through preparation for dying, the process itself and beyond it to disposal of corpses and bereavement, four short appendices offer the template of a “death plan”, and discussions of organ and tissue donation, assisted dying and advance directives. The subjects of these discussions are topical in Ireland. The Human Tissue Bill, in preparation for some time and presently to be laid before the Oireachtas, will assume consent to organ donation, meaning one must opt out rather than in as a donor (though donation will still be subject to veto by listed next-of-kin, assuming they are located and contacted in time). The right to assisted dying, meanwhile, was brought into public focus by the 2013 judgement in Fleming v Ireland, where the Supreme Court ruled that the Irish Constitution could not support the right. The right to life enshrined in the Constitution has been ruled to encompass the right to allow natural death, so for example to refuse life-sustaining treatment, but this was ruled not to extend to a right to assisted death (despite acknowledgement by the judges that a solid libertarian-philosophical case for the right could be made). Finally, the gradual commencement of the 2015 Assisted Decision-Making (Capacity) Act, section 8 of which deals with advance healthcare directives, will define the legal context for advance care planning and so-called “living wills” in Ireland. (The topic of advanced healthcare directives is dealt with within capacity legislation on the assumption that unless one has diminished capacity, one can simply express one’s preferences – indeed, diminished capacity could be defined as the inability adequately to express one’s preferences). While she is objective and noncommittal on the first two subjects, Tisdale firmly advises engagement with end-of-life planning. Her pragmatic advice is twofold: first, do not leave it for your family to figure out your wishes. Second, in her endorsement of the words of John Abraham, an Episcopal priest, she counsels reposing trust in these matters in “someone who can be a ‘son-of-a-bitch’”. The curt lesson on this score is: sort it out while still among the quick.

Before these appendices, the book proper closes with a three-page paean to life, a fragile and ever-endangered thing, which only because it is hedged about by death offers delight and beauty. The chapter celebrates joy; and as Tisdale insists, joy could attend the immediate presence of death, so death’s general, pervasive presence in our lives confers meaning on them. Mortality and vulnerability are the larger context required to make one’s experiences special. These are not original sentiments, but Tisdale has in a sense earned this closing through the hard, clear-eyed look at death and dying that precedes it. Were one averse to this late turn to the lyrical, there remains that hardness and clarity to remind one that the living is after all but the rarer type of the dead, and that to be grateful for life must entail some gratitude to the dead – not only one’s direct ancestors, but to the countless, mostly nameless host gone before one to fatten the maggots.

The Lancet recently established a Commission on the Value of Death (which includes Irish authors Mark O’Connell and Seamus O’Mahony), a marvellous way of framing the issue that reminds us that people must die so that others may live, and that to strive after, never mind achieve, immortality (the dream of certain Silicon Valley denizens, as O’Connell records in To Be a Machine) would be a scandalous violation of the intergenerational contract with future humans. One might recall Elias Canetti’s analysis of the figure of the survivor in his eccentric opus Crowds and Power, his assertion that we draw sustenance from the deaths of others and his proposition that survival where others have succumbed is productive of the feeling of power. One might find the ground for a sober reckoning with death in the thought that one’s own flourishing is purchased at the cost of others’ perishing, and thereby discover some renewed solidarity with both the living and the dead; and finally meditate upon a cast-off thought from Canetti’s journals which stands, solitary and gemlike, among the jottings: “Perhaps every breath you take is someone else’s last.”

To Be a Machine: Adventures Among Cyborgs, Utopians, Hackers, and the Futurists Solving the Modest Problem of Death by Mark O’Connell was reviewed in the May 2017 issue of the Dublin Review of Books: http://drb.ie/essays/thinking-machines
The Way we Die Now by Seamus O’Mahony is discussed at http://drb.ie/blog/the-critics/2017/02/13/the-way-we-die

Paul O’Mahoney works with the Irish Hospice Foundation. He lives in Dublin. The Irish Hospice Foundation will be hosting a number of Café Conversations throughout the country in 2019. The Foundation’s Think Ahead form, which facilitates advance planning, can be accessed at www.thinkahead.ie