Death and dying in Ethiopia

Hiberet Tessema Belay, MD, MRCPsych

Ethiopia is a country located in East Africa with a diverse population of around 113 million people. As such, there are variations in the cultures of the different regions of Ethiopia. This article by no means intends to be representative of all ethnicities, cultures or religions, and will show a culture from Addis Ababa, the capital city of Ethiopia.

Death and dying is an accepted norm of life globally and also in Ethiopia. While little is discussed about dying and caring for the dying; a dearth of practices and norms and elaborate funeral processions occur nationwide in the country. These are also documented in various articles and journals.

According to the CDC, the common causes of death in Ethiopia are neonatal disorders followed by diarrheal diseases, lower respiratory tract infections, tuberculosis and ischemic heart disease. The life expectancy at birth is 67 years. Terminal illnesses, cancer and age-related deaths, are now surfacing, as the country’s economic status is slowly increasing. Palliative care services are not widely available or extensively established. To my knowledge, there are no formal palliative care services in Ethiopia. While researching this topic I came across a hospice foundation in Ethiopia, a voluntary organisation that has been set up in 2003 and provides limited but much needed hospice care.

In the absence of a medical model of palliative care services, death and the dying are by and large managed within communities. It is common, and almost diagnostic of impending death, when relatives are informed to ‘take the patient home’. This phraseology is locally understood to imply that all healthcare has been exhausted, and the patient is dying.

Care of the dying

It falls to the immediate family to look after the dying at home. There are no nursing homes, no palliative care services, and no community health care professionals visiting homes to provide support. Recently with an increasing number of private medical and nursing colleges, private home care is available for hire at what may locally be considered expensive rates, at least in the capital city of Addis Ababa.

Families and neighbours by and large provide care to those beset with illness and nearing the end of life. Sometimes, the decision to inform impending death rests with close family and relatives, who may take a stance to support the dying, and usually withhold from breaking the bad news of informing the ill, of their impending death. This is done in a spirit of ‘sparing’ pain and agony for the dying.

Once the decision to take the ill person home is reached, families may take a number of options ranging from taking the dying person for a second opinion to a different health facility to consulting local healers to acceptance of impending death and nursing the dying at home.

At home, the dying person is typically kept in a separate space in the house. For example, (if there is a bedroom space, this will be dedicated to their care) and looked after by close family members and elders who might have had prior experience in looking after the dying. Food is offered to the dying and encouraged and supported to eat, if consciousness allows. Pain control is not common practice, nor is it practical. Typically, there is one person attending the dying person’s side, perhaps monitoring for life to end to alert the elders who diagnose the finality of life.

By and large, families come together to provide care for the dying and provide supportive care. What is striking is the extended fibres of society, neighbours and relatives, even those that one may not normally get along with, who put their differences aside and come and visit the dying person and give encouraging words to the family in an attempt to keep them strong. Typically, a brief see and greet will be conducted of the dying person, and guests stay in separate area. If available, the living room or outdoor space will be used to stay with the family and offer supportive words and share the family’s worries and stress.

Eder

Almost all Ethiopians are members of an Eder in their own localities. An Eder is a social association akin to funeral insurance. As an Eder member, one pays the allocated membership fee (usually affordable and small amount) monthly. Typically, the funeral day and the first 40 days after one is deceased are earmarked as a grieving period, following which normal life continues for those close to the deceased. Eder members give and receive practical support for the funeral.

Most Eder’s have in store all that will be needed for catering and practical items to the last detail such as plates, cups, pots etc; which will be needed after the burial of the deceased. With these they prepare food for the guests that will come to give their respects for the dead and for the family of the deceased. This will ease the burden of accommodating the guests by the deceased family. Anecdotally I have recently also heard of stronger Eder’s that have managed to raise enough funds not only to bury the dead, but also build property that generates income for Eder members.

Regardless of the time of death, the Eder trumpet announcing the death of the person who passed will be blown by the Eder trumpeter in the wee hours of the morning to advise members in the community of the Eder to be aware of the death of so and so and to be present early to put up the tent and bring chairs, plates etc to the deceased person’s residence to kick start the burial process and the grand send off the dead. The announcer also adds a penalty fee will apply to those who ignore his message and don’t present themselves.

Typically, no food can be eaten until the dead person is buried and laid beneath the ground. Following this, all attendees at the burial will return to the deceased house for a meal prepared by the Eder members.

The immediate family then takes a central sit, usually on a mattress and accepts incoming guests for three days. At the three-day mark, an early morning ‘crying session’ will be held, to remember the memories of the deceased. Another feast – a memorabilia- takes place on day forty following which things start to resume to normal. A widow grieving her husband’s loss, would typically sleep on a mattress on the ground for 40 days out of respect for her husband. Thereafter an annual remembrance event will be held, with a feast being prepared if families have capabilities to arrange it.

Admissions to intensive care of people highly likely to die

An accepted principle in intensive care medicine is that is intensive care should be provided for those with the greatest chance of benefit from the care. The demand for intensive care exceeds availability even in high income countries. So intensive should not ideally be provided those for whom death seems unavoidable, although palliative care in the intensive care unit (which sounds like an oxymoron) is growing. (1) Ironically many deaths in intensive care may be “better” than deaths on acute wards simply because the staff are so familiar with death and the ratio of staff to patients is much higher.

Decisions on whom to admit to intensive care are inevitably complex, although the chance that the patient can benefit is a prime criterion. The The Intensive Care National Audit and Research Centre (ICNARC) has been collecting data and conducting research in intensive care in England, Wales, and Northern Ireland for 25 years and has seen an increase in the number of intensive care beds and a drop in mortality.(2) The centre has developed a score that predicts accurately the chance of a patient dying in intensive care and produced for the Commission data on patients who had 80% or greater chance of dying (or 20% or less chance of surviving) in intensive care.

Overall in 2018-19 there were 163 340 total admissions to adult intensive care with 30 195 deaths (18.5%). Over the decade 2009-19, 93 870 patients with a greater than 80% chance of dying were admitted, accounting for 6.4% of all admissions; 57.5% of the admissions were for men, and the average age of those admitted was 68.6 years. The proportion of admissions varied across critical care units from 0 to 14.5% (median 6.5%, interquartile range 5.1 to 7.9%). After excluding readmissions of the same patient within the same acute hospital stay, overall acute hospital mortality for these patients was 89.5% (80,593/90,047), reflecting the accuracy of the predictive score. Over the decade the proportion of these admissions declined slightly but the absolute number increased slightly as the number of intensive care beds increased.

Nobody can say whether these rates are right or wrong, but they are interesting in providing data on the degree to which treatment continues when the risk of death is high. The variation that is seen among units is seen in almost all parts of health care, and it is reassuring that there has been no increase in the proportion of high risk patients admitted, showing that there is no increasing tendency to treat those likely to die.

We thank ICNARC for suppling these data, and their full paper is attached.

We all need an internal debate about death and dying and our own deaths

“Everyone´s death is different,” writes Jennie Dear at the end of What Does it Feel Like to Die? Inspiring New Insights into the Experience of Dying. Dear is correct: just as every life is different so every death is different. The dissimilarities in deaths lie in whether or not we accept the inevitability of death and especially in our internal dialogues about the necessity of death. Dear´s book try to answer an old problem: how to speak openly and freely about the different ways of dying? The power of modern medicine makes these discussions particularly urgent—to preserve autonomy and avoid harm at the end of life. What does it Feel Like to Die? is an open invitation to talk about the limits of life as well as of the limits of medical technology.

Life experiences are “the best teacher.” In Dear’s book readers will learn how her family members and friends confronted the existential crisis that comes with dying. The book is directed to readers eager to understand the meaning of facing mortality, the significance of dying people’s deep denial about what is happening, and the ways to cope with dying. She uses many ways to answer the difficult question: What does it feel like to die? Modern death in rich societies is sometimes a kind of disease in that medicine instead of prolonging life prolongs death.

Dear discusses how in rich societies assisted suicide and euthanasia were until recently largely taboo. The major impression of the West of the Buddhist monks expelled from Tibet after the invasion by China was the almost absolute negation of death. In many Eastern cultures knowledge of self precedes knowledge of the world. The order is clear: first the inside, after the outside. In the West the order (or disorder) is upside down: first the exterior, occasionally the interior. When people do not reflect about themselves, and the purpose of living is seen in material achievements it is difficult to accept and understand the dying process.    

What Does it feel Like to Die? is not a medical book and is not directed at health professionals, but an increasing number of health professionals are themselves unfamiliar and uncomfortable with death. It is a vivid book about the process of dying by a daughter, a former journalist, and long-time hospice volunteer. The triad of daughter, journalist, and volunteer allows Dear to study the soul of very sick patients who will die in weeks or months despite the best attention from doctors and nurses. She understands the implications of end-stage disease, “a disease that cannot be cured or adequately treated that is reasonably expected to result in death of the patient.” She explains in plain language the feelings of dying patients: “dying is different for everyone. There´s no textbook”; “pain seems to dissipate in the very last few hours, and, for most people, those hours are peaceful”; “in the last two weeks of her life, my mother was ready and eager to die”; “I´ve also tried to convey some sense of the beauty and joy that often surround dying  -the sense of meaning it can give to the dying  person and people around her.”

Dear includes topics like the existential slap, where people die, whether dying hurts, and the last few hours.  She considers doubts and questions that we should all contemplate. The language is clear, and she mixes personal reflections with the words of doctors and hospice nurses and other published accounts of the dying process. This book can help the internal debate we should all have about death and dying and our own deaths.

Arnoldo Kraus, MD.

Jennie Dear: What does it Feel Like to die? Inspiring New Insights into de Experience of Dying (Citadel  Press. Kensington Publishing Corp. 2019).

The history of natural death is the history of medicalisation of the struggle against death. Ivan Illich, 1976

I’ve used these quotes from Ivan Illich’s “Limits to Medicine” (1976) to illustrate his argument of how death has been steadily medicalised, reaching its apotheosis perhaps with people dying of Covid-19 surrounded by gowned and masked nurses and able to communicate with those they love only electronically.

[In the Middle Ages] The imminence of death was an exquisite and constant reminder of the fragility and tenderness of life.

[At the end of the 15th century] From a lifelong encounter [a dance], death has turned into the event of a moment.

Once death had become such a natural force, people wanted to master it by learning the art or the skill of dying…[The Ars Moriendi ] was a ‘how-to’ book in the modern sense, a complete guide to the business of dying, a method to be learned while one was in good health and to be kept at one’s fingertips for use in that inescapable hour.

After the Reformation, death became and remained macabre.

[In the 15th and 16th centuries] The question whether medicine ever could “prolong” life was heatedly disputed in the medical schools of Palermo, Fez, and even Paris. Many Arab and Jewish doctors denied this power outright, and declared such an attempt to interfere with the natural order to be blasphemous.

Paracelsus (1493-1541) wrote: “Nature knows the boundaries of her course. According to her own appointed term, she confers upon each of her creatures its proper life span, so that its energies are consumed during the time that elapses between the moment of its birth and its predestined end…A man’s death is nothing but the end of his daily work, an expiration of air, the consummation of his innate balsamic self-curing power, the extinction of the light of nature, and a great separation of the three: body, soul, and spirit. Death is a return to the womb.”

Frances Bacon (1561-1626) was the first to suggest that physicians might prolong life. He divided medicine into three offices: “First the preservation of health, second, the cure of disease, and third, the prolongation of life…[the] third part of medicine, regarding the prolongation of life: this is a new part, and deficient, although the most noble of all.”

[ By the 18th century] a new type of rich man refused to die in retirement and insisted on being carried away by death from natural exhaustion while still on the job. He refused to accept death unless he was in good health in an active old age.

[By the beginning of the 19th century] To die while courting one’s grandson’s mistress became the symbol of a desirable end.

[By the 20th century] Death had paled into a metaphorical figure, and killer diseases had taken his place.

The hope of doctors to control the outcome of specific diseases gave rise to the myth that they had power over death. The new powers attributed to the profession gave rise to the new status of the clinician.

While “timely” death had originated in the emerging class of consciousness of the bourgeois, “clinical” death originated in the emerging professional consciousness of the new, scientifically trained doctor,

In our century [the 20th] a valetudinarian’s death while undergoing treatment by clinically trained doctors came to be perceived, for the first time, as a civil right.

The right to a natural death was formulated as a claim to equal consumption of medical services, rather than as a freedom from the evils of industrial work or as a new liberty and power for self-care.

When the doctor contrived to step between humanity and death, the latter lost the immediacy and intimacy gained four hundred years earlier. Death that had lost face and shape had lost its dignity.

We cannot understand the deeply rooted structure of our social organisation unless we see it as a multifaceted exorcism of all forms of evil death. Our major institutions constitute a gigantic defense programme waging war on behalf of “humanity” against death-dealing agencies and classes. This is total war.

The myth of progress of all people towards the same kind of death diminishes the feeling of guilt on the part of the “haves” by transforming the ugly deaths the “have-nots” die into the result of present underdevelopment, which ought to be remedied by further expansion of medical institutions.

The expectation of medicalised death hooks the rich on unlimited insurance payments and lures the poor into a gilded death-trap.

Thanks to the medicalisation of death, health care has become a monolithic world religion.

“Natural death” is now the point at which the human organism refuses any further input of treatment.

Dying has become the ultimate form of consumer resistance.

Health, or the power to cope, has been expropriated down to the last breath, technical death has won a victory over dying. Mechanical death has conquered and destroyed all other deaths.

A society’s image of death reveals the level of independence of its people, their personal relatedness, self-reliance, and aliveness.

The white man’s image of death has spread with medical civilisation and has been a major force in colonialisation.

More death (and life) quotes collected by the Lancet Commission on the Value of Death

“The first day after a death, the new absence

Is always the same; we should be careful


Of each other, we should be kind

While there is still time.”


Philip Larkin

“There are only two days with fewer than twenty-four hours in each lifetime, sitting like bookmarks astride our lives; one is celebrated every year, yet it is the other that makes us see living as precious.”― Kathryn Mannix, With the End in Mind: Dying, Death, and Wisdom in an Age of Denial

“The death rate remains 100 per cent, and the pattern of the final days, and the way we actually die, are unchanged. What is different is that we have lost the familiarity we once had with that process, and we have lost the vocabulary and etiquette that served us so well in past times, when death was acknowledged to be inevitable. Instead of dying in a dear and familiar room with people we love around us, we now die in ambulances and emergency rooms and intensive care units, our loved ones separated from us by the machinery of life preservation.”― Kathryn Mannix, With the End in Mind: Dying, Death and Wisdom in an Age of Denial

“To begin depriving death of its greatest advantage over us, let us adopt a way clean contrary to that common one; let us deprive death of its strangeness, let us frequent it, let us get used to it; let us have nothing more often in mind than death… We do not know where death awaits us: so let us wait for it everywhere.” Michel de Montaigne

“To practice death is to practice freedom. A man who has learned how to die has unlearned how to be a slave.” Michel de Montaigne

“A sigh isn’t just a sigh. We inhale the world and breathe out meaning. While we can. While we can.” Salman Rushdie, The Moor’s Last Sigh

 “Our human tragedy is that we are unable to comprehend our experience, it slips through our fingers, we can’t hold on to it, and the more time passes, the harder it gets…My father said that the natural world gave us explanations to compensate for the meanings we could not grasp. The slant of the cold sunlight on a winter pine, the music of water, an oar cutting the lake and the flight of birds, the mountains’ nobility , the silence of the silence. We are given life but must accept that it is unattainable and rejoice in what can be held in the eye, the memory, the mind.” Salman Rushdie, Shalimar the Clown

 “One heart is not connected to another through harmony alone. They are, instead, linked deeply through their wounds. Pain linked to pain, fragility to fragility. There is no silence without a cry of grief, no forgiveness without bloodshed, no acceptance without a passage through acute loss. That is what lies at the root of true harmony.” Haruki Murakami, Colorless Tsukuru Tazaki and His Years of Pilgrimage

“Make the most of your regrets; never smother your sorrow, but tend and cherish it ‘til it comes to have a separate and integral interest. To regret deeply is to live afresh.” Thoreau

“Well, every one can master a grief, but he that has it.” Shakespeare

 “Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.” Atul Gawande, Being Mortal: Medicine and What Matters in the End

“It is not death that the very old tell me they fear. It is what happens short of death—losing their hearing, their memory, their best friends, their way of life. As Felix put it to me, “Old age is a continuous series of losses.” Philip Roth put it more bitterly in his novel Everyman: “Old age is not a battle. Old age is a massacre.” Atul Gawande, Being Mortal: Medicine and What Matters in the End

“We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being.” Atul Gawande, Being Mortal: Illness, Medicine and What Matters in the End

“We emerge deserving of little credit; we who are capable of ignoring the conditions which make muted people suffer. The dissatisfied dead cannot noise abroad the negligence they have experienced.” J Hinton, Dying

“The poor die in agony in neglect, the middle class die in agony in ignorance and the rich die in agony on a ventilator. No one gets a dignified and pain free death.” Dr Sankha Mitra – personal communication about end of life care in India

“The pain of loss is still immense, but to feel that everything that could have been done was done, that those who cared did so with knowledge, professionalism, devotion, and even love, and that the person died without pain, comfortably, with those they loved around them, is to feel immense gratitude and a curious humility. Julia Neuberger (about death at home).

“Let life go now, release it, do not

Cling to life in animal weakness, you may not –

However you cling, you may not –

Keep hold of the world.

Liberation opens: recognise it;

This is reality.” Ted Hughes’s translation of The Tibetan Book of Living and Dying

“We have watered the trees that blossom in the summer-time. Now let’s sprinkle those whose flowering-time is past. That will be a better deed, because we shall not be working for a reward” Kalidasa

“When the Unwanted Guest arrives

I might be afraid.

I might smile or say:

My day was good, let night fall.

You will find the fields ploughed, the house clean, the table set

And everything in its place.” Paulo Coelho, The Zahir

“I want to die while I am still alive.” Paulo Coelho. The Zahir

“I warm’d both hands before the fire of life.

It sinks, and I am ready to depart.” Walter Savage Landor

 “There is a time for everything’

A season for every activity under Heaven:

A time to be born and a time to die.” Eccleiastes 3:2

“Our ancestors, who constantly faced random death and inexplicable disease, would be ashamed of our death cowardice.” Kevin Toolis My Father’s Wake,

“Our mortality is now a tragedy not an act of nature.” Kevin Toolis, My Father’s Wake

“Dying of cancer, or even dying itself, is written up as if mortality was an untoward challenge, an optional personal quest on Everest, that must be memorialised for its unique insights by the most adventurous among us rather than a common tale of expiry on the universal road.” Kevin Toolis, My Father’s Wake

In Glasgow, where I was born, death seemed imminent. In Canada, where I trained, it was thought inevitable. In California, where I live now, it’s considered optional.” Ian Morrison

“Before they get to conquer death the bio-gerontologists will have to conquer time, physics, and the universe. And philosophy.” Kevin Toolis, My Father’s Wake

“We say we are greater yet we suffer more, somehow, than any generation before us.” Kevin Toolis, My Father’s Wake

“In the Western Death Machine we have come to see dying as an act of inconsequence.” My Father’s Wake

“The world makes sense to us because we die, not because we don’t.” Kevin Toolis, My Father’s Wake

“Man’s life is soft and weak, and his death is hard and strong.

“The life of vegetation is soft and fragile, and its death is also withered. So the hard and strong is one nature of those who die, and the soft and weak are nature for those who live.” Lao Tzu, The Book of Virtue

“Life is what I want; righteousness is what I want. If you can’t have both, and then give up their lives and take the righteousness.” Mencius

“The Master said: “If a man in the morning hear the right way, he may die in the evening without regret”–The Analects of Confucius

“Death itself. The right to die and to live one’s own death. That moment for each of us, as Michel Foucault said, the most private and secret of our entire existence, the very last instant, the limit, when power no longer has any hold over us and when we call out (as Foucault did, with his last breath, “Call Canguilhem, he knows how to die!”) for the one who will help us cross over. All of that, all that knowledge, that immemorial and decisive scene, yanked away for a period of weeks in a gesture of prophylactic impatience that you never thought could happen that way—bodies wrapped in white plastic, like letters dumped in a mailbox; corpses found decomposing in trucks outside a funeral home in Brooklyn, where the director said “bodies are coming out of our ears”; cursory funerals; goodbyes on WhatsApp.” Bernard-Henry Lévy (BHL) on death in the Covid-19 pandemic, The Virus in the Age of Madness

The Dying Matters website also contains a collection of death quotes: https://www.dyingmatters.org/page/famous-quotes-about-death-0

Quotes on death and dying collected by the Lancet Commission on the Value of Death

“Death is not the opposite of life, but a part of it”. Haruki Murakami.

“Life is pleasant. Death is peaceful. It´s the transition that is troublesome”. Isaac Asimov.

“People living deeply have no fear of death”. Anais Nin

It is our knowledge that we have to die that makes us human…” Alexander Smith, Dreamthorp

“Is it not for us to confess that in our civilized attitude towards death we are once more living psychologically beyond our means, and must reform and give truth its due?  Would it not be better to give death the place in actuality and in our thoughts which properly belongs to it, and to yield a little more prominence to that unconscious attitude towards death which we have hitherto so carefully suppressed?  This hardly seems indeed a greater achievement, but rather a backward step…but it has the merit of taking somewhat more into account the true state of affairs….” Sigmund Freud, Thoughts for the Times on War and Death

“…it has always seemed to me that the only painless death must be that which takes the intelligence by violent surprise and from the rear so to speak since if death be anything at all beyond a brief and peculiar emotional state of the bereaved it must be a brief and likewise peculiar state of the subject as well and if aught can be more painful to any intelligence above that of a child or an idiot than a slow and gradual confronting with that which over a long period of bewilderment and dread it has been taught to regard as an irrevocable and unplumbable finality, I do not know it.” William Faulkner, Absalom, Absalom

“Back of everything is the great specter of universal death, the all-encompassing blackness. . . . We need a life not correlated with death . . . a good that will not perish, a good in fact that flies beyond the Goods of nature. . . . And so with most of us: . . . a little irritable weakness will bring the worm at the core of all our usual springs of delight into full view, and turn us into melancholy metaphysicians.” William James, The Varieties of Religious Experience

“…the idea of death, the fear of it, haunts the human animal like nothing else; it is a mainspring of human activity—activity designed largely to avoid the fatality of death, to overcome it by denying in some way that it is the final destiny for man.” Ernest Becker, The Denial of Death

 “Come to terms with death. Thereafter anything is possible.” Albert Camus, Notebooks

“The only two certainties in life are death and taxes.” Wrongly attributed to Mark Twain

“A medical revolution has extended the life of our elder citizens without providing the dignity and security those later years deserve.” J.F. Kennedy, speech 1960

“Facing the development of modern medicine, a central question arises: How many floors has dying?” Jean Paul Sartre

“Die Würde des Menschen liegt in der Wahl.“ (Human dignity lies in choice) Max Frisch:

“The fear of death follows from the fear of life. A man who lives fully is prepared to die at any time”. Mark Twain.

 “I don´t want to die without any scars”. Chuck Palahniuk.

“Life is for the living.

      Death is for the dead.

      Let life be like music.

      And death a note unsaid”

       Langston Hughes.

“You only live twice:

 Once when you are born

 And once when you look death in the face”. Ian Fleming

“It is nothing to die. It is frightful not to live”.

     Victor Hugo.

“The dead can survive as part of the lives of those that still live.” Kenzaburo Oe

“Dying

 Is an art, like everything else.

 I do it exceptionally well.

 I do it so it feels like hell.

I do it so it feels real.

I guess you could say I have a call.”

       Sylvia Plath

“Mr S [in India] told us with outward calm, “I shall come again next Wednesday. I will bring a piece of rope with me. If the tablets [opiates] are still not here, I am going to hang myself from that tree”. He pointed to the window. I believed he meant what he said.” Indian physician

“I ended up in an isolation room in the antechamber of the intensive care department. You’re tired, so you’re resigned to your fate. You completely surrender to the nursing staff. You live in a routine from syringe to infusion and you hope you make it. I am usually quite proactive in the way I operate, but here I was 100% patient.  Peter Piot, dean of the London School of Hygiene and Tropical Medicine and discover of the Ebola virus https://www.sciencemag.org/news/2020/05/finally-virus-got-me-scientist-who-fought-ebola-and-hiv-reflects-facing-death-covid-19

‘Gogol died screaming and Diaghilev died laughing, but Ravel died gradually. That is the worst.’ Igor Stravinsky

“I think my sense of death– which appears exaggerated to some of my friends – is quite proportionate. For me, death is the one appalling fact which defines life; unless you are constantly aware of it, you cannot begin to understand what life is about; unless you know and feel that the days of wine and roses are limited, that the wine will madeirize and the roses turn brown in their stinking water before all are thrown out for ever – including the jug – there is no context to such pleasures and interests as come your way on the road to the grave.” Julian Barnes

“Life is a predicament before death.” Henry James

“We live but an afternoon and strike but one note.” Henry James (probably misquoted)

“The most interesting part of life is death.” Turgenev

“We may always choose knowledge over ignorance; we may wish to be conscious of our dying; we may hope for a best-case scenario in which a calm mind observes a gradual decline, perhaps with a Voltairean finger on the ebbing pulse.

We may get all this; but even so, we should consider the evidence of Arthur Koestler. In Dialogue with Death he recorded his experiences in the Francoist prisons of Malaga and Seville during the Spanish Civil War. Admittedly, there is a difference between young men facing immediate execution by political opponents, and older men and women, most of their lives behind them, contemplating quieter extinctions. But Koestler observed many of those about to die – including, as he was assured, himself – and came to the following conclusions.

First, that no one, even in the condemned cell, even hearing the sound of their friends and comrades being shot, can ever truly believe in his own death; indeed, Koestler thought this fact could be expressed quasi-mathematically – ‘One’s disbelief in death grows in proportion to its approach.’

Secondly, the mind has recourse to various tricks when it finds itself in the presence of death: it produces ‘merciful narcotics or ecstatic stimulants’ to deceive us. In particular, Koestler thought, it is capable of splitting consciousness in two, so that one half is examining coolly what the other half is experiencing. In this way, ‘the consciousness sees to it that its complete annihilation is never experienced’.

Two decades previously, in ‘Thoughts for the Times on War and Death’, Freud had written: ‘It is indeed impossible to imagine our own death; and whenever we attempt to do so, we can perceive that we are in fact still present as spectators.’” Julian Barnes

“‘Death is not an artist.’ Its virtues are at best artisanal: diligence, stubborn application and a sense of contradictoriness which at times rises to the level of irony; but it doesn’t have enough subtlety, or ambiguity, and is more repetitive than a Bruckner symphony. True, it has complete flexibility of location, and a pretty array of encircling customs and superstitions.” Julian Barnes

“God might be dead, but death is well alive.” Julian Barnes

‘Good writers, like good soldiers, know how to die, whereas politicians and doctors are afraid of death. Everyone can corroborate this remark by looking around them. Though there are, of course, exceptions.’ Alphonse Daudet on the death of Jules Renard

“Speak only of that which you truly know.” Wittgenstein. [How then can I, or indeed anybody, write of death.] Julian Barnes

“If you don’t know how to die, don’t worry; Nature will tell you what to do on the spot, fully and adequately. She will do this job perfectly for you; don’t bother your head about it.” Montaigne

“If I had my life over again I should form the habit of nightly composing myself to thoughts of death. I would practise, as it were, the remembrance of death. There is no other practice which so intensifies life. Death, when it approaches, ought not to take one by surprise. It should be part of the full experience of life. Without an ever-present sense of death life is insipid. You might as well live on the whites of eggs.” Muriel Spark, Momento Mori

Fear of death sells the pharmaceutical, political, financial, film, and food product promising to make good the wish to live forever. Lewis Lapham

I was born without knowing why. I have lived with knowing why, and I am dying without either knowing why or how. Pierre Gassendi, 1655

Death is a punishment to some, to some a gift, and to many a favour. Seneca

Perhaps even the happiest of mankind would not, if it were offered, accept the privilege of being immortal. What he would ask in lieu of it is not to die until he chose. J S Mill

Books are a real magic, or rather necromancy—a person speaking from the dead, and speaking his most earnest feelings and gravest and most recondite thoughts. J S Mill

Words, words, words, that’s the only medicine. Anatole Broyard

An even more horrible death is one that’s kept at bay by the miracles of modern medicine, a death that never ends. In the name of Hippocrates, doctors have invented the most exquisite form of torture ever known to man: survival. Luis Buñuel

To desire immortality for the individual is really the same as wanting to perpetuate an error for ever. Arthur Schopenhauer

How pathetic it was to try to relegate death to the periphery of life when death was at the centre of everything. Elif Shafak

The experiment of making mortality a medical experience is just decades old. It is young. And the evidence is it is failing. Atul Gawande

Scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it. Atul Gawande

When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not. Atul Gawande

Whether we admit it or not, a lot of doctors don’t like taking care of the elderly. Atul Gawande

This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals—from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly—but never the goal that matters to people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.

The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Atul Gawande

If end of life discussions were an experimental drug, the FDA would approve it. Atul Gawande

Learning about the end of life: The lesson seems almost Zen: you live longer only when you stop trying to live longer. Atul Gawande

More than 40% of oncologists admit to offering treatments that they believe are unlikely to work. Atul Gawande

Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.

About two thirds of patients are willing to undergo therapies they don’t want if that is what their loved ones want.Atul Gawande

The only mistake that physicians seem to fear is doing too little. Atul Gawande

When doctors forget the larger aims of people’s lives the suffering they inflict can be barbaric. Atul Gawande

Over and over we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious of the harm done. Atul Gawande

To me, the story of medicine is the story of how we deal with the incompleteness of our knowledge and the fallibility of our skills. Atul Gawande

Four future scenarios of death and dying

The future is unpredictable. The unexpected happens often and can have a major impact. Nevertheless, some thought of how the future might look is important in preparing for it. Scenarios are one way of doing this and were developed after the wholly unforeseen oil shock of 1974. Scenarios are not predictions of the future but rather sketches of plausible futures with the limits of plausibility set wide. They are not what people would like to happen but rather what might happen. They have been used to think about the future of South Africa after Apartheid, the NHS, and scientific publishing. They are in many ways devices for thinking about the present, recognising things that will be important whatever the future brings.

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Biogerontology: delaying death, promoting healthy ageing, or both?

Seamus O’Mahony

Biogerontology is the study of the biological mechanisms which control ageing, with the ultimate aim of developing interventions to delay death. In some animals, selective breeding and caloric restriction can lead to significant increases in longevity. There is no evidence, however, that such interventions work in humans. A variety of drugs and nutritional supplements (“nutraceuticals”) have been postulated as effective anti-ageing treatments, but – as some biogerontologists concede – trials looking at interventions to delay ageing would be extremely difficult to conduct, as the only meaningful end-point would be age at death, likely to be several decades after commencing the intervention. Nevertheless, there is a growing belief within biogerontology that effective strategies to delay ageing will inevitably emerge. If ageing can be delayed in other mammals, they argue, then it is only a matter of time that it can be delayed in humans, too. The biogerontologist Richard A Miller wrote in 2002: “Thus one can, with some confidence, expect that an effective antiageing intervention might increase the mean and maximal human life span by about 40 percent”. (1)

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The public health of death, dying, and grief has been neglected, but now is the time

Richard Smith

The dying spend less than 5% of their time with doctors and nurses, and 95% doing something else, perhaps alone, with family and friends, walking the dog, making love, reading poetry, or watching the television. “Dying is not hard,” said Alan Kellehear, 50th Anniversary Professor, End of Life Care, University of Bradford in London this week; it’s what happens on the journey to death, which may last years, that can be hard: anxiety, depression, fear, loneliness, social isolation, stigma, looking into the abyss, and suicide. Yet palliative care concerns itself primarily with the 5% not the 95%.

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Warme Zorg

Laura Green

Whilst reading through a student’s dissertation recently I was reminded of the little-used notion of the term ‘warm care’. In the Netherlands the term warme zorg refers to an approach to care based on Bowlby’s attachment theory and the creation of feelings of security and safety. It attends to creating a sense of homeliness (even if someone is not at home), incorporating proximity (including touch), family and freedom. Emerging from home today into the chilly, dank darkness of the Luddenden Valley, I wrapped my coat tightly around myself and on my journey I considered the meaning of warmth.

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