In the Midst of Life by Jennifer Worth
Praise for In the Midst of Life
‘I never thought I’d care for a book about dying but this one is life-enhancing’ Matthew Parris, The Times
‘Here she shares her experiences and observations from the front line of nursing . .. What makes the book bearable is Worth’s compassion and a burning mission to remind us that end-of-life care doesn’t have to be complex’ Lady
‘Jennifer Worth addresses head-on the taboos that surround death and dying . .. Her stories are often poignant and sometimes disturbing, but all show an understanding of the patient’s needs’ Nursing Standard
‘Perhaps her most thought-provoking book … Worth raises challenging questions that are sure to encourage the reader to develop a stronger, more profound view of death’ Church of England Newspaper
‘An honest, moving and sobering account which told me much I did not know – or possibly didn’t care to think about too deeply … I feel fortunate to have read this inspiring book’ The Woman Writer
Praise for Call the Midwife
‘Worth is indeed a natural storyteller – in the best sense of the term, with apparent artlessness, in fact concealing high art – and her detailed account of being a midwife in London’s East End is gripping, moving and convincing from beginning to end … a powerful evocation of a long-gone world’ David Kynaston, Literary Review
‘This uplifting story is about love, that of mothers for their children, and the love of God that compelled the nuns to dedicate their lives to the well-being of the poor’ Tablet
‘Funny disturbing and incredibly moving, Call the Midwife opens a window onto the fascinating and colourful world of the East End in the 1950s’ Mature Times
‘Worth’s portrait is subtle, skilfully describing a sense of community that no longer exists’ FT Magazine
‘Funny disturbing and incredibly moving’ Yorkshire Evening Post
Dedicated to
Lydia, Daniel and Eleanor
and all of their generation
They are the future
IN THE MIDST OF LIFE
JENNIFER WORTH, SRN ,SCM
Clinical Editor
David Hackett, MD, FRCP, FESC
Consultant Cardiologist
Contents
Cover
Praise for In the Midst of Life
Dedication
Title Page
Table of Contents
In The Midst of Life We Are in Death
Introduction
1956: A Natural Death
1953: An Unnatural Death
A Life Saved
Munable To Die
Retirement
Threescore Years and Ten
Dr Elisabeth Kubler-Ross
Dame Cicely Saunders
1957: Dr Conrad Hyem
1963-64: The Marie Curie Hospital
Family Involvement
Forget-Me-Nots
The Advance Directive
The Broom Cupboard
Poor Van Gogh
Social Attitudes To Death
Grief
1965: Stroke
A Dangerous Subject
A Family Divided
Dementia
Who Cares?
1968: Congestive Heart Failure
Open Heart Resuscitation
Lazarus
Faith
Cardio-Pulmonary Resuscitation (Cpr) In Hospital
999
1980: Time To Go
1986: Acute Heart Failure
2004-06: A Good Death
2007: The Life Force
2008: Homecoming
Euthanasia
2010: Helga
In The Midst of Life We Are in Death
Appendices
Appendix I
Appendix II The Paramedic’s Tale
Appendix III
Appendix IV
Further Reading And Information
Glossary
Acknowledgements
Author biography
Also by Jennifer Worth
Index
Copyright
In my beginning is my end;
In my end is my beginning.
— T.S. Eliot
IN THE MIDST OF LIFE WE ARE IN DEATH
This book assumes that death is sacred.
It is about the mystery, the beauty, the loneliness and the aspirations of death.
It is about the fear of death, and our inability to handle it.
It is about how we die. Perhaps few people have seen the Angel of Death approach and depart.
It is about the meaning, shape and purpose of life that will some day end.
It is about my own search to understand.
Since girlhood I have pondered these mysteries, reflecting on the deaths I have seen in hospitals and the hopes and fears of people who have come my way.
This book is about the need for peace in the hour of our death.
It suggests that death can sometimes be a friend, and is not always an enemy.
It raises the vexed issue of resuscitation, and the law.
It is about the need to rekindle reverence in the face of death.
It is about the humility of acceptance.
It is about the spiritual nature of death – God if you like, or Allah, or Krishna, or Jehovah, or Brahma, or one of a thousand names given to something we cannot understand.
Or just Evolution, Random Chance, or Biochemistry.
It really does not matter what you think or believe.
Death comes for us all.
How, when and where we die has always been a game of chance.
Our determination to control it has not loaded the dice in our favour.
Did anyone ever imagine that it would?
— Jennifer Worth
INTRODUCTION
Fifty years of thought, and four years of writing, have gone into the production of this book. The best wine and cheese, we are told, are slow to mature. Let us hope it is the same for books!
It has been written with a strong sense of vocation. ‘Modern medicine’ was just developing when I started nursing in the 1950s – they were exciting days. I was only eighteen, but could see quite clearly that with every new advance in pharmacology and surgery, the acceptance of death was being transformed into denial.
Only those who have seen death are able to talk about it meaningfully. I was privileged to be of that generation of nurses who were required to sit with the dying, and the insights gained from those experiences inform the whole book.
I left nursing in 1973, and although the earlier stories in the book are now medical history, the moral and ethical issues remain the same. But through the professional journals, friends and relatives, and observation, I have kept in touch with medicine and nursing, as the later stories illustrate. In order to bring this book clinically into the twenty-first century, I have asked three professionals who are currently working to write updates on modern medical practice: David Hackett, consultant cardiologist; Madeline Bass, palliative care nurse and teacher; Louise Massen, ambulance service paramedic and clinician. These papers are to be found in the appendices at the end of the book. Readers who are interested in a serious update on professional papers and government reports and directives can find an extensive reading list, but it must be remembered that these are changing all the time, and almost every month new material is added.
Jennifer Worth,
September 2010
1956
A NATURAL DEATH
My grandfather died in 1956 at the age of eighty-six. I loved him deeply and was very close to him. I saw very little of my father during the war, and in the years after. Every girl needs a man in her life, and my dear grandfather gladly filled that role. I treasure a Bible tha
I remember his tenderness throughout my early years; going for long walks in the countryside, my grandfather pointing out and naming birds, trees and flowers. I remember going to his allotment to dig potatoes, him pushing me in the wheelbarrow and me shouting ‘Faster, faster!’ I remember helping him to polish shoes, clean the windows, clear out his garden shed, clean the grate and chop the wood and get the coal in. And I remember him growing old.
It was a gradual process. First it was the wheelbarrow. However much I shouted, he couldn’t go any faster.
‘I am getting old,’ he would say. ‘You get out and run. Your legs are younger than mine.’
As I grew older and stronger, he grew older and weaker, and, after a few years, I was the one pushing the wheelbarrow. Soon, digging for potatoes became too much for him, so I dug up the golden white globes. I had always been told that Grandad was hard of hearing, but I had never noticed it when I was little. I prattled on and he always seemed to understand me. I noticed that his nose dripped.
‘Why is your nose dripping?’ I asked, pertly.
‘Don’t be saucy, little madam,’ he replied, taking out his handkerchief and wiping the offending organ. From an early age I remember pulling his skin and watching with interest as it settled slowly back into place. I pulled my own skin, and it bounced back.
‘That’s as it should be,’ Grandad said. ‘When you are as old as me your skin will be like mine.’
‘I’m never going to grow old!’ I shouted confidently as I raced down the garden path to his shed, which was always a place of wonder.
My grandmother had died in 1943, of a heart attack, I was told. My grandfather and my mother were with her when she died. My mother told me that he held her in his arms during the last half hour of life, tenderly stroking her face and kissing her. She had died as she had lived, in the protection of her husband’s love, and, after her death, he lived alone. They had had eight children, and four of his daughters, including my mother, regularly attended to his needs. Cleaning became a problem. I recall my mother saying,
‘Dad’s getting very dirty. I found two pairs of dirty underpants hidden away in the back of his drawer.’
And, as I grew older, I was aware that his smell had changed. I had always thought of him as a lovely smell of earth and leaves and smoky old jackets. But it changed. Later on I realised the change in the smell was urine. He was never really incontinent, but most elderly men have prostate problems; it was gradual, and never so noticeable as to be offensive.
Two of his daughters had a small sweetshop at the end of the road. At first, after Grandma’s death, they had let Grandad serve in the shop. He enjoyed meeting the customers, and ‘it gives him something to do,’ my aunts said. A few years later he could not be trusted to give the correct change, and, worse still, he did not seem to notice when his nose was dripping, so in the end he had to be steered gently away. He missed the shop, but said acceptingly. ‘I’m getting old, now. You young people must take over.’
My grandfather was a Boer War veteran (1898–1902) and he was, therefore, offered a place as a Chelsea Pensioner, but he refused. He preferred to stay with his family – and how grateful I am that he did. My development towards adult life would have been very different, had he accepted.
The doctor came to see him from time to time. My grandfather didn’t really need medical treatment, but he got ‘chesty’ in the winters and so the doctor ordered cough linctus, which probably had no effect. He said, ‘There is nothing wrong. Your father’s quite healthy. He is getting old, well past his three score years and ten. He will just potter on until he fades away.’
In those days, doctors accepted that people die of old age.
‘He shouldn’t be smoking that pipe,’ said my aunt.
‘Let him,’ replied the doctor, ‘if he enjoys it.’
For years, my grandfather had smoked a briar pipe filled with a villainous black tobacco called Twist, which he cut up himself with a penknife. I remember poking the shards of tobacco into the bowl of the pipe and lighting a coloured spill from the fire, holding it over the bowl as he sucked hard to get the thing going. The smoke was prolific and the odour pungent (to this day I adore the smell of a man with a pipe). The doctor was right. My grandfather enjoyed it, and it certainly never did him any harm, until the day when my aunt found a large burn hole in his bed! After that he was supposed to smoke only when one of his daughters was present. I doubt if he obeyed.
‘He won’t eat properly.’ my aunt said. ‘I cook a nice dinner and he only picks at it.’
So the doctor advised a pint of stout a day. My grandfather seemed to live on this, plus a bowl of bread and milk, which he made for himself each night. I wasn’t aware of any other treatments prescribed for his failing strength.
Tragedy struck the family when my grandfather’s eldest son died at the age of forty. I remember the old man weeping at the funeral.
‘Why could it not have been me? My life is over. My only wish is to join my dear wife in her grave. But he, my son, he had everything to live for.’
He was visibly smaller. It was not merely that I was growing up and getting taller. He had been a guardsman, well over six feet tall, and he shrank by several inches until we were the same height. His proud, military bearing seemed to fold in on itself, and his confident step became an old man’s shuffle.
He felt the cold more, and needed several layers of woollies to keep him warm. He had a coal fire every day, except in the hottest weather, and always kept a good stock of fuel in the grate, but chopping wood and carrying coals became harder as the years passed, so he made lots of journeys to the coal house, carrying a little at a time, and someone else chopped the wood.
We still went to his allotment on sunny days, he and I, me pushing the wheelbarrow, he prodding the pavement with his stick. But the weeds grew higher and higher and could not be controlled. Eventually, we dug his last crop of potatoes, and he had not the strength, nor indeed the interest, to plant any more.
My grandfather seemed to be withdrawing into himself. He became deafer, which cut him off from conversation, but he seemed perfectly content to sit in the luxury of silence, puffing his pipe, and thinking his thoughts. Sometimes he chuckled quietly to himself. Occasionally one saw a tear in the corner of his eye, but if anyone asked why, he did not respond. He had never been a talkative man, and, as he drew towards the end of his life, speech became even more of an effort, something he did not want to be bothered with. When he had to speak, his words were slow and measured, and somewhat distant, as though his mind was a long way away, and had to be coaxed back into the world around him. Sometimes he spoke of death, saying, ‘I will soon be going to my dear wife.’ On another occasion he spoke of seeing his dead son again. He also spoke of the Angel of Death approaching. This is an old-fashioned concept, but was very real to former generations.
It was obvious that he was fading away, although he was never particularly ill in the medical understanding of the term. The regular pumping of his heart, which circulates the blood, conveying oxygen to all parts of the body, was becoming irregular, but he never had any pills to control the heartbeat. Without adequate oxygen supply, the internal organs gradually lose their efficiency, and eventually cease to function. The tide of his life was gently ebbing away.
The last week or two of his life came suddenly. One day, he was pottering about as usual, and the next he couldn’t be bothered to get up. ‘Let me bide,’
I was nursing then, and lived about forty miles away, but I came back as often as I could to see him. It happened that I was with him on the day of his death. I had seen quite a lot of people die, all nurses have, and I knew what to expect. As soon as I entered the room I could see the change, which is obvious to the experienced eye. In the last few hours of life something mysterious happens, which can best be described as a veil being drawn. The dying person looks the same, but is not the same. Breathing changes, skin colour changes, the eyes change, muscle tone all but vanishes, speech becomes virtually impossible. The nearer one approaches death, the less one has the strength to resist it.
I told my mother to call the rest of the family. By a miracle of public transport, they all arrived, and he died in the evening of that day.
The doctor was not called until afterwards, and then only to sign the death certificate. He asked if we wanted a woman to come in to lay out the body, but I said no, I wanted to do it myself. And so I prepared his body and put a shroud on him, in readiness for his last journey to the grave, as I had been taught in my first year of training.
I do not know what the doctor entered on the death certificate. He knew, and we knew, that the cause of death was old age. But he could not put that. Legally, death has to be the outcome of an illness.
For everything there is a season,
A time for every matter under the sun.
A time to be born, and a time to die.
— Ecclesiastes Chapter 3, verses 1 and 2
1953
AN UNNATURAL DEATH
It is rare to predict one’s own death, or to meet anyone who has done so. But occasionally it happens, and I knew such a lady.