Dying Well

A Guide to Enabling a Good Death

Rabbi Julia Neuberger

• Publisher: CRC Press
• Year: 2018
• Print ISBN: 9781857759402
• eBook ISBN: 9781315358413
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

This book explores the Care Trust concept promoted by central government for improving partnership working between health and social care. Using case studies and examples to raise current issues related to partnership working it explains how Care Trusts are bridging the gap between health and social care and considers how they are delivering more co-ordinated services and improved outcomes. All healthcare and social care professionals with responsibility for involved in or affected by the new partnership working arrangements will find this book useful reading.

1

An introduction to the history of ideas about death

Wherever we are in the world, whatever our age, our gender, our class, we all have feelings about death. Those feelings are often poorly expressed, even poorly acknowledged. For many peoples throughout the world, how they bury or cremate their dead, and how they mourn them, labels the group from which they come, the tribe. Often it says little about belief but far more about culture. Often it says little about individual desires but more about community expectations. How we view our deaths, how we treat our dying, how we console the bereaved, how we care for the carers, is universal subject matter. But how it is addressed varies considerably from individual to individual, from group to group, from country to country, from healthcare system to healthcare system, from you to me to her to him. There are no universal answers to the question: ‘How will I, or you, or him, or her, meet the end?’

The idea of the good death is an ancient one. The Biblical expression of being gathered to one’s fathers has a certain restfulness to it, and, indeed, an idea of what is normal. We are supposed to die in generational order, parents before children, grandparents before parents. We are supposed to be gathered to our fathers and mothers. The most satisfactory outcome to be desired is that we will die peacefully, possibly aware that we are near our end, having achieved most of what we wished to achieve. Our hope is that there will be no pain, either physical or emotional (a hope rarely completely achieved), and that we will either know nothing about it (dying at home in our sleep) or that we will know very little, just enough to say our farewells to those we love.

We would like to be like Abraham, in the Hebrew Bible:

And these are the days of the years of Abraham’s life which he lived, an hundred threescore and fifteen years. Then Abraham gave up the ghost, and died in a good old age, an old man and full of years, and was gathered to his people. And his sons Isaac and Ishmael buried him in the cave of Machpelah, in the field of Ephron the son of Zohar the Hittite . . . (Genesis 25:7–9) in the cave which Abraham had bought from Ephron as a burial place for his first wife, Sarah, and which became the family tomb.

Or, if we cannot be like that, and perhaps some of us might have our doubts about reaching the age of 175, worried about who will care for us, we would certainly like to be like Moses, who, though he did not go into the promised land, saw it from the top of Mount Nebo, and was:

an hundred and twenty years old when he died: his eye was not dim, nor was his natural force (sexual powers) abated. (Deuteronomy 34:7)

We would all like that. Or even to be like King David, who said to Solomon his son:

I go the way of all the earth (1 Kings 2:2)

and then gave him instructions:

Be thou strong therefore and shew thyself a man; and keep the charge of the Lord thy God, to walk in his ways, to keep his statutes, and his commandments, and his judgments, and his testimonies, as it is written in the law of Moses, that thou mayest prosper in all that thou doest, and whithersoever thou turnest thyself. (1 Kings 2:2–3)

These are only a few examples of the peaceful deaths we encounter reading though ancient Hebrew literature, though possibly – in the Greek classics at least – we read more about the violent deaths in battle, or in some kind of disgrace. As a result of the texts that are our legacy, we know about how suicide was abhorrent to many ancient peoples – yet there was a wholly acceptable form of martyrdom: killing the women and children before turning the swords on themselves, rather than falling into the hands of particular enemies. We know that city captors often treated their captives to cruel and prolonged deaths by torture. And, of course, we read about women dying in childbirth as well, a commonplace event. So the expressions about death we cherish are those of a peaceful death, being gathered to our ancestors, or ‘sleeping’ with them. The image of an endless rest is an appealing one. The idea that our rest might be broken in an afterlife, with torment as punishment for acts we have performed in this life, is a later idea, and a deeply disturbing one.

Yet the idea of an underworld, peopled by demons and guards, is itself an ancient one. The ancient Greeks and Romans believed in their underworld, with Charon the boatman taking the dead across the Styx to Hades, where a shadowy existence continued. Ancient Greek funeral customs included putting a coin in the mouth of the deceased person as they were being prepared for burial, in order that they had the money to pay Charon for the fare across the river. And bodies had to be buried quickly – not, as many have argued, because of the heat of the summers in the ancient world, but to prevent the spirit wandering about aimlessly – presumably because it was thought that just such an aimless spirit could do damage if it decided to do so. It was Christianity that developed the idea of Heaven and Hell, as well as Purgatory, possibly out of older ideas about the underworld, and with other influences at work such as Mithraism, a religion that was enormously popular in the Roman world. Judaism was later in its construction of an idea of a place for an afterlife. Whilst the place to which the dead go in the Hebrew Bible is Sheol, the pit, a belief grew up in rabbinic Judaism, very likely under Christian influence, or in competition with the successful proselytising of Christianity, in Heaven, in a place to which we go (often named pardes, i.e. Paradise). The idea of punishment and reward grew, and it stretched out through Christianity and Islam as well, especially the reward or punishment of the soul, as distinct from the body, immediately after the death. The idea of the resurrection of the dead at the end of days began to grow too, a concept not found in the Hebrew Bible except in the extraordinary prophecies of the prophet Ezekiel, in his vision about the valley of dry bones:

And he said to me, Son of Man, can these bones live? And I answered, O Lord God, thou knowest . . . And when I beheld, lo, the sinews and the flesh came up upon them, and the skin covered them above; but there was no breath in them . . . And ye shall know that I am the Lord, when I have opened your graves, O my people, and brought you up out of your graves. (Ezekiel 37:3,8,13)

The fascination with death, and with the possible future life of the dead, is an ancient one. One has only to look at Egyptian tomb paintings, and to learn a little about the ancient Egyptian obsession with death, and the world of the dead, to the extent that the dead person took everything necessary with them to the next world, servants, meals, clothes, and so on, to realise that the next world was as ‘real’ to them as this. Concepts of Heaven in many traditions are very similar to the ideal life as lived on earth, too, and Egyptians are not alone in packing up everything someone might need for them to take with them on their journey to the afterlife. We see it dramatically in Chinese customs, as well as in what we read in Homer of the death of Patroclus and the human sacrifice that took place at the time. Equally, there is some pretty unpleasant evidence of what the Vikings did in the ninth and tenth centuries, when burying one of their hero warriors. A slave-girl, of no status, would be forced to have sex with a selection of the chieftains, and would then be ritually murdered and buried with the deceased hero. And there is much more – all of these customs suggesting that something had to be done to give safe passage to wherever the dead person was going, something to give help – it could be pots and pans, a concubine, servants, money or such like. The Aztecs forced their prisoners to be buried alive – or killed them first – in their funeral rituals for their dead heroes, and in Bronze Age Nitriansky Hradok, in modern Slovakia, there were 10 apparently praying, kneeling individuals buried alive – willingly, according to some authorities, though Timothy Taylor (2002) suggests that willingness is a curious term to use of those who might have felt duty, altruism or fear for their own afterlives or, even, the present lives of their children and families. We do not know. Suffice it to say that the ancient world seems to have many examples of human sacrifice as part of death rituals for those who have died naturally or in battle, and that the idea of taking people with you in death to the next world was commonplace.

Along with all that, there were the prayers and rituals needed for the dead person to get to where they needed to be. Indeed, the depiction of the sun god, Ra, making his journey by boat across the sky and then going under the earth to the world below – some equivalent to the world of the dead – and being reborn every day shows a little of the thinking behind Egyptian concepts of the world beyond this life. It is, of course, a universal human concern, as is fear of death, fear of pain, and a way of looking at one’s end without being able simply to accept it and ignore it. For human beings, however matter-of-fact, there is too much emotion associated with our end, even where life is cheap, and where grief seems to modern western people either too short-lived or overly ritualised.

There is also the feeling that ‘we shall meet again’, a feeling shared by people who are dying and people who are bereaved, something that has its ancient origins in the idea of an afterlife where all will gather, or in the ideas about a final resurrection at the end of days when everyone will be resurrected at their best, and meet again. But the sense that people who have been separated in death will meet again is very strong in many cultures and religions, including Britain where formal religion has been in considerable decline for many decades.

More recent thinking about death

In modern times, in the west, ideas about the good death originate very largely from the 18th century. The good death was pain free, or pain dulled by laudanum. It consisted in saying one’s goodbyes surrounded by one’s family. The later, overly sentimental, Victorian pictures of deathbed scenes actually originate from the 18th century concept of the good death, where farewells were said, where prayers were said, where the family came to say goodbye, and where death itself was not a terrifying presence.

The anticipation of a good 18th century person was of a moment to say goodbye at death. ‘Ars moriendi’, the art of dying, is, amongst other things, the title of a medieval treatise that contains images of horrible and persuasive demons who prey upon a person’s last moments, and which necessitate a firm hold on Christian belief in order to counter them. But the idea of an art in dying, the art of dying well, is probably as old as humanity itself, and the problem that has hit us in the 20th and 21st centuries is that, from the end of the Victorian era on, we have used euphemisms for death, regarded those who discuss death as morbid, and somehow forgotten that the experience of dying is as important as almost any other experience for human beings, and deserves proper consideration, though not obsession.

It is worth thinking about our use of langauge for a moment. All too often, we do not even say that someone has died. We say instead that they have ‘passed on’ or ‘passed away’. They are ‘the dear departed’, or the ‘one who has gone to his/her eternal home’. Euphemisms came into common usage in the Victorian age, but that was a time when death was, if anything, overly marked. The Victorians took the funeral and grief to hitherto unknown degrees of observance; some would argue that many Victorians themselves became obsessional, including Queen Victoria in her profound grief for Prince Albert. Whatever the truth of that, it is at the end of the Victorian age that the plethora of euphemisms really hit the English scene. Non-conformists seem to have been the first to use them, but it became commonplace soon after, so that when George V died in 1936, his death was announced on BBC radio as the fact that he ‘had passed peacefully away’. The word death was not used. People ‘passed away’, ‘fell asleep’, ‘departed this life’. In military action, they ‘copped it’, or ‘their number was up’. And colloquialisms abound – people ‘pop their clogs’, ‘hop the twig’, and ‘turn their toes up’. There are many more such expressions.

But, if these are the expressions that are used, if saying the word ‘death’ becomes less common, even less acceptable, the idea that one might contemplate one’s death, as early religious thinkers would have urged us to do, would have seemed morbid. Indeed, the consideration of death and dying at all was considered morbid during the middle of this century – which did not stop people studying and talking about the subject. But it was not a subject for polite society. When Ian Crichton wrote his book, The Art of Dying, which was published in 1976, he started with the fact that everyone had told him it was a morbid subject when they had asked what he was writing about and he had told them. When Sarah Boston and Rachel Trezise were working on their TV series and book for Channel Four, Merely Mortal, a decade later, they were met with the same reaction. Indeed, approaching terminally ill patients for discussions with them for the film was an exercise in tact itself, given the sensitivities.

How then, with these attitudes so prevalent in our time, can one talk properly about the good death? How can this be done, particularly in the light of the fact that either we are considered morbid to want to talk about it at all, or we are drawn away from it in embarrassment because of the awareness of how many people have been killed violently, in war, genocide, or by famine and suffering, who had no chance to think about a good death in reasonable old age? And did that reluctance to discuss death hit us in the wake of the First World War, when so many young men were killed in the trenches, when barely a family in Britain was untouched by loss? Was death the great unmentionable, the stuff of nightmares and panic attacks but not of debate and discussion and comfort? For, though from the 16th century on, people had kept a ‘memento mori’ – a picture of a skull and a Bible, just a skull or some other reminder by their side – to remember that we must die, from the end of the First World War onwards that custom became deeply unfashionable. We did not want to remember that we must die. Too many had just died, before their time, and those that had returned had their nerves shot to pieces, and were blinded or aimless and deeply depressed. Hence the lack of discussion, and hence the reaction of the 1970s and 1980s to an unmentionable subject – now once again fashionable, but still too rarely made unemotional, factual and practical.

Yet, during all this period, some have continued to think about it, and write about it. In some ways, discussion of some aspects of death and dying has become fashionable, particularly some of the details surrounding physical relief of pain and the attendant emotional, and psychological, relief that goes along with it, allowing a different kind of contemplation. The old adage, that we should live every day as if it were our last, or that we should repent one day before we die – on the basis that it should be a permanent state, for most of us cannot know exactly when we will die (Mishnah: Ethics of the Fathers II:15) – has somehow stuck with us. You cannot ignore it. Though various studies have shown people shying away from it (quoted by John Hinton in his superb book Dying), the majority of people have wanted to think about it and talk about it, as TV programmes on euthanasia, and on the ever-popular hospice movement, make abundantly clear.

Indeed, the hospice movement, which has so caught the imagination of the British public that it has become one of the most popular human charities, expresses the desire people have for a ‘dignified death’, an expression one hears all too often, and which, even with the best will in the world and the best offices of the hospice movement and other palliative care services, is unlikely to happen. Death is not a dignified business, in most cases, though that does not militate against us dying well, even enjoying, odd though that may read, ‘a good death’.

In some extraordinary way, the 19th century, particularly the latter half of it, destroyed that concept of the good death. The Victorians were wonderful at funerals and at mourning. All the rules about purple and black, about large funerals, about great new cemeteries that were monuments to magnificent architecture and stonemasonry, are Victorian. Exhibitions on the subject of the Victorian way of death show all too clearly how they rejoiced in a funeral train to go to Randall’s Park at Leatherhead in Surrey, or how the great monuments of the south London cemeteries came to be constructed. A decent funeral came to be every working person’s desire and dream. Until the 1940s and even later in some parts of the British Isles, people were putting away a shilling a week for their funerals, giving it to the insurance man when he came round. My mother, when she first came to Britain from Nazi Germany as a refugee, had never encountered the shilling for the funeral before. But amongst working girls at Marks and Spencer in the 1930s, it was still commonplace. Decency in death was as important, possibly even more important, than decency in life.

But it became overly sentimentalised, in two distinct ways. First, there was the sentimentality surrounding the death of children. Sunday school prize novel after Sunday school prize novel told the tale of an angelic child, often, but not always, female, who was going to Heaven. We saw her in a golden glow, with fair hair shining. The child was saying goodbye to her not too grief stricken family, who knew she was on her way to a better place. The best known picture of a doctor attending a dying child, Sir Luke Fildes’ The Doctor, where a child lies dying with the doctor beside her in a fisherman’s cottage on the English coast, uses that particular theme, that particular lie, one might almost add. There are thousands upon thousands of stories like that to be found in second-hand bookshops, but the style of thinking about a child’s death is by no means original in those volumes. For the classic of all times in that regard is perhaps Charlotte Brontë’s Jane Eyre, where, towards the beginning of the schooldays at the appalling Lowood school, a real school which Charlotte Brontë both attended as a child and where she later taught, Helen Burns dies of consumption. Helen was almost certainly Charlotte’s own sister Maria, and the conversation which Helen and the young Jane have is one which both reduces the reader to tears and irritates beyond measure. For Helen herself is sure she is going to a better place. There will be no more earthly pain. Jane is not to grieve for her too much. As I have got older I have felt more and more angry about that idea that Jane should not grieve for her too much. ‘Why not?’, I hear myself asking. The need to grieve is a very human one. To somehow find solace in the idea that the dear departed has gone to a better place is one thing, but not to be allowed to grieve because of it seems extraordinary, when the grief is largely to do with missing the person, and having terrible feelings of disappointment at what they failed to achieve in their life because it was cut short. And, in this case, the fictionalised person whose life was cut short was the author’s sister, a child who died unnecessarily because conditions at the school were so appalling.

But Jane Eyre takes the sentimentalising of childhood deaths to its apogee, possibly as a literary device to pour scorn on the school and its governors who allowed such conditions which led to the girls’ illnesses and deaths to persist. There are thousands of examples, however, and the Victorian imagination on the subject of childhood death, at a time when the death of children was common, is one that still colours some of our thinking, even though we now find the death of children in the west...

Table of contents

• Cover
• Title Page
• Copyright Page
• Contents
• Forewords
• Preface
• Acknowledgements
• 1 An introduction to the history of ideas about death
• 2 Grief – reactions normal and abnormal
• 3 The role of helpers
• 4 The best that we can do
• 5 Religious beliefs and customs
• 6 How can we make dying better for people?
• 7 The good death
• General information and bibliography
• Index