The impact Linda had on the students quickly resonated throughout the University Hospital, and when she died, her short life had not been in vain, because the lessons she taught on that memorable day became a new teaching in the medical world.
*
Elisabeth was asked to conduct more seminars in the same way, by interviewing dying patients in public lectures. Over the next five years, hundreds of people volunteered. The auditorium was always packed, and a larger venue had to be found. It was a completely new departure in medical teaching. Some said it was exploitative of vulnerable people, others that it was tasteless and unnecessary. Indeed, most of her colleagues were hostile to what she was doing, and her audience was mostly made up of medical and theology students, nurses, paramedics of all disciplines, sociologists, priests, rabbis and counsellors.
Elisabeth became a powerful lecturer. There was something about her that was magnetic. Perhaps it was the sincerity of her passion and conviction, mingled with a waspish wit and pithy humour; perhaps it was her ruthless honesty. Who can say, exactly? But whatever it was, with her incisive attack, and cut-glass delivery, she made a tremendous impact.
Her fame began to spread, and in 1969 Macmillan Publishing asked her to write a book. Her mind was so full of the mental, emotional and spiritual needs of dying people, that she completed the book in two months. When it was finished, she realised that it was exactly the kind of work she had hoped to find in the university library when she was researching her first lecture.
On Death and Dying is still considered to be the master text on the psychology of the subject. It is required reading at medical and nursing schools and is recommended reading for most graduate schools of psychiatry, analytical psychology, theology and sociology.
On Death and Dying is such an extraordinary book that it would be futile for me to try to describe it; such an attempt would only distort and diminish it. It is written with passion – and a depth of understanding that could never be summarised. The best advice I can give anyone is to read it for yourself, and to read between the lines as well as the words on the page. It is written in beautiful English, easy to understand, by a psychiatrist who has studied in depth the mental turmoil that goes on in the human mind as the knowledge of impending death draws closer. It is full of insights into our thought process – shock, disbelief, anger, fear, depression and loneliness. Hope is explored, and the meaning and purpose of life. Most important of all, is the final reconciliation and acceptance. The integrity of the work is indisputable, because much of it has been taken from the public lectures or interviews she gave with dying patients – all of which were recorded by the hospital authorities. Some of the accounts are so moving it is scarcely possible to read without tears. And virtually all of them hold up a mirror in which we can see ourselves, and our loved ones, in the final chapter of life.
By 1980, medical science predicted that within a couple of decades doctors would be able to conquer all disease. Then, in 1981, a brief paragraph in the American Morbidity Report referred to the death of forty-two young men in New York from an unknown disease that appeared to be related to faults in the immune system. By 1983, thousands of such deaths had been reported. The AIDS epidemic had hit a horrified and terrified America. By 1985, babies were being born with AIDS.
Elisabeth was sixty, retired from hospital work, but running clinics, retreats and workshops for the dying in her own property in Virginia. She had around twenty acres of land, with large buildings and numerous helpers. In 1986 she received a letter scribbled on a torn scrap of paper:
Dear Dr Ross,
I am dying of AIDS. I have a baby son who has AIDS, and I can no longer take care of him. No one will take him or touch him. How much would you charge to take care of him?
Elisabeth took the child for no charge and cared for him herself. A stream of letters from desperate parents arrived in her mailbox that year, all saying much the same thing – no one would take the children. One mother said that she had approached more than seventy agencies and been turned down by them all. She died without ever knowing her daughter was safe.
Elisabeth, ever emotional, ever passionate, boiled with rage at the paranoia in society, which impelled people to turn their backs on these children. She opened up her home and made it into a hospice for AIDS babies. The respectable and wealthy community of Virginia was in uproar over her work. They called her the Antichrist, the AIDS lady who was trying to bring this dreadful disease into their homes. A town meeting was called and thousands of people tried to get into the tiny Methodist church; they tried to force closure of the hospice, they yelled and booed and hissed, and refused to listen to reasoned speakers. The police closed the meeting at midnight, and Elisabeth was given a police guard to prevent a lynching.
The hospice remained, but she was persecuted by the locals. The Ku Klux Klan burned crosses on her lawn, and terrorised her helpers; bullets were shot through her windows and her car was repeatedly sabotaged. She was a woman of spirit, and virtually fearless, but she was getting older, running out of fire, energy and health, and a year later the hospice for AIDS babies was closed. However, not defeated, she marshalled her considerable resources to try to find other people who would adopt or foster the babies. The word spread and soon hundreds of AIDS babies were adopted by loving families who welcomed these unfortunate children. The work continues.
In 1995 Elisabeth suffered the first of a series of small strokes. Undeterred she pressed on with life, overcoming the physical difficulties with characteristic resourcefulness. She always said, ‘I am ready to die,’ and when, in 2004, a massive stroke occurred I feel sure she was happy to be released from the earthly life to which she had given so much.
DAME CICELY SAUNDERS
(1918-2005)
If I were asked to nominate one woman as the genius of the last century, I would say Dame Cicely Saunders. At the age of twenty she started nursing at St Thomas’s Hospital in London, where she was horrified by the neglect of patients who were dying. Many times she heard doctors say, ‘There is nothing more we can do,’ and watched them walk away. She saw cancer patients with constant, intractable pain screaming for pain killers and being denied them for the specious reason that ‘the effect of the drug will wear off as the body gets used to it and increased doses will be required, and we will be creating drug addicts’. Ten years later, in the early 1950s, I also witnessed this sort of attitude. Doctors were trained in diagnosis and active treatment. If cure was not possible, the medical approach was, ‘There is nothing more to be done.’
Four years into her career, Cicely Saunders injured her back and had to leave nursing, so she trained as an almoner – what we would now call a medical social worker. During this time she saw another side to dying – family involvement, or lack of it, and the effect this had on the dying person. She saw that loneliness, or the feeling of rejection, causes a spiritual pain, which can be as bad, or worse, than the physical pain.
Cicely Saunders was a deeply religious girl and faith in a loving God was the core of her life. Religious conviction is comparatively rare, and a ‘calling’ even more so. Dimly at first, but inexorably, she felt that she was being called by God to work with the dying, and to lead others in the same path. Prayer and meditation led her to examine the work of the Catholic Order of the Irish Sisters of Charity at St Joseph’s Hospice for the Dying in Hackney, London. She worked with them as a volunteer, whilst continuing her paid work as an almoner.
At St Joseph’s she saw that, as a patient drew near to the terminal stage of an illness, far from there being ‘nothing more we can do,’ there was a great deal more to be done: bring comfort in relaxed surroundings, look after the physical, emotional and spiritual well-being of the patient, give medical care if possible, but if not, meticulous nursing in the last stages of life. However, she saw that the nuns were just as hampered as hospital nurses in giving pain relief for cancer patients, because the medical staff had control of drugs.
During the next six ye
ars her vision developed and she realised that the medical profession must change, not just in its attitude to pain relief, but also in the wider context of recognising the needs of a dying patient as an essential part of the physician’s work. What an awesome task for a young girl in her twenties – to change the medical profession! She was ‘only’ a nurse and a social worker. What could she do? A calling from God is always hard and demanding, but it can never be resisted, whatever the cost to the individual.
None of us lives or works in isolation, and Cicely was constantly talking to like-minded people; what emerged was the advice that she should train to be a doctor. She did not have the scientific background required, but intensive study got her up to standard, and, at the age of thirty-two, she was accepted by St Thomas’s Medical School in London. Six years later, in 1952, she qualified. She was nearly forty, and had travelled a long road from student nurse to qualified doctor. But a longer, more difficult road lay ahead.
Cicely Saunders was the first doctor to devote her entire professional career to the care of the dying. Many have since followed, inspired by her example and teaching. Her inspiration is with us still, and widening all the time in the hospice movement that she created, and that became international in scope.
As a newly qualified doctor she was determined that her first task must be research into the control of pain. The medical director and the nuns of St Joseph’s Hospice gave her the facilities to test her theory that pain in cancer could be fully controlled by the regular, four-hourly use of analgesics. The idea was revolutionary at the time and, by the 1960s, she had proved, beyond a shadow of doubt, that drugs given in this way did not create zombie-like drug addicts, that the dose did not have to be increased to maintain effectiveness, in fact it could sometimes be decreased, and that patients became calm, comfortable and, in every way, happier because the pain had gone.
Sixty years ago, only about four per cent of cancer patients survived; today, around forty-eight per cent can be cured. Pain is nearly always part of the disease, and we take it for granted that pain can be controlled. But it took a nurse-turned-doctor to prove the fact – and point the way for others to follow.
I remember so clearly a woman I nursed at the Royal Berkshire Hospital in 1953. She had a sarcoma, an aggressive type of cancer. The seat of the cancer was probably in her ovaries, but it had spread to her bones and she was in the orthopaedic ward because one of her legs was broken. It was altogether the wrong ward for her, because most orthopaedic patients are relatively young and feel quite well, but this lady was dying. Whilst they hobbled around on their crutches she lay in bed, unable to move. One could see that she was trying to hide the pain, but every so often sweat would break out on her forehead and she would bite the sheets and grip her hands so tight the knuckles became white. Through clenched teeth she would articulate in a strangled voice:
‘Can’t you give me something, Nurse – another injection? I can’t stand much more.’
Ward sister would say something like:
‘Not just yet, dear, it’s too soon after the last dose. Try to hang on till the night nurses come on duty. Then you can have an injection for the night.’
In speechless agony she would nod, her eyes frantic with fear and suffering, then say: ‘I’ll try, Sister, I’ll try. How long must I wait?’
‘Only another couple of hours, dear. I tell you what; I can give you a couple of codeine. That will ease things until you have your injection.’
The ward sister was not being stupid or callous; this was no better and no worse than the norm. It was accepted practice.
When I was a ward sister in 1963, at the Marie Curie Hospital in Hampstead, this would never occur. We gave analgesics, four hourly, day and night, and every dose was different, tailored to individual needs and the patient’s level of pain. Dr Saunders’ studies had been so successful, and her teaching disseminated so widely, that uncontrolled pain had become a memory.
Dr Saunders did not rest on her laurels, however. Great souls never do; there is always more to be accomplished. She felt that her calling was to create a hospice that would be a working/ teaching model for the medical profession. This imaginative approach would not only ensure pain relief and meticulous nursing, but also maintain a patient’s self-respect and dignity, enhancing the remaining period of that person’s life, however short it might be.
A hospice for the dying was unknown and unacceptable to the decision-makers of the National Health Service in the 1960s and they would not support it, so private money had to be found. Fundraising was a massive task. Millions had to be raised, a building site found and purchased, architects instructed and planning permission obtained. Dr Saunders had many helpers and admirers, people who were also aware of the neglect of the dying, and who were inspired by her visionary outlook and inexhaustible energy. Money was raised, obstacles overcome, and in 1967, nearly thirty years after the young nurse first heard her calling, St Christopher’s Hospice was opened in Sydenham, Kent.
Planning, building, fundraising – that was the easy part. Even research into the control of pain was easy, compared with the next part – the need to change medical and social attitudes to death.
The primary objective of the hospice movement was, and still is, to show to the world that death need not be a time of suffering, but a time in which to achieve fulfilment. This does not mean a grand ending to a brilliant life; it encompasses the quiet, unsung lives of millions of ordinary people who have lived simply, within a small circle, doing their best and achieving great things in small ways. My mother-in-law was such a person. She had done nothing spectacular in her life, but she was a good woman and, in human understanding, she was one of the wisest people I have known.
She died in her daughter’s arms, quietly and peacefully, as she had lived. This is what I mean by the fulfilment of life.
The hospice movement strives to achieve this, working towards the mental, physical, spiritual and emotional well-being of each patient as he or she approaches the end.
Meticulous, skilled nursing is the most important part of the care of the dying, and the nurse becomes a central figure in the patient’s life. Dr Saunders knew this – had she not been a nurse herself? Most nurses are by nature kind and compassionate, but they need special training, and Cicely Saunders’ series of six articles on the Care of the Dying in the Nursing Times (1959–61) were seminal in the development of the profession and it has been found that those who specialise in palliative care usually find it so rewarding that they do not want to return to mainstream medicine.
Death is a family affair – or should be –just as a new birth involves the whole family. But dying at home often needs professional help, and this was another part of Dr Saunders’ vision – to maximise home visiting. St Christopher’s Hospice trained nurses to work in the community and, today, practically every hospice in the country has its own specialised nurses working in people’s homes so that a dying patient does not have to go into a hospital or even a hospice. In addition, we have, in the UK, over three thousand Macmillan Nurses who have had five years of training and who work exclusively with cancer patients and those who wish to die at home. This work is mostly funded by charity donations. The National Health Service provides about twenty per cent of the total cost.
Dr Saunders’ achievement was truly staggering. ‘The Care of the Dying’ is a fairly common phrase now, and most people do not realise that it is a relatively recent branch of medicine, with its own specialist training, research and disciplines. Today. around two hundred and fifty Hospices for the Care of the Dying exist all over the country, and this does not include specialist palliative care units in most general hospitals. It has become an international movement – over one hundred countries now have their own hospice care, and look to the teaching of Cicely Saunders as to how they should be run.
Dame Cicely Saunders died of cancer in 2005 at the age of eighty-seven, in St Christopher’s Hospice.
It is interesting to compare the lives
of Cicely Saunders and Elisabeth Kubler-Ross. They were about the same age - Cicely the elder by eight years - and they died within a year of each other. They both had war experience, when death was all around. With no known contact between each other, they both saw the needs and suffering of dying patients in English and American hospitals in the post-war era. They both identified the cause as the widespread denial of death by the medical professions and society at large. The work undertaken by both of them was groundbreaking. It is one of those fascinating instances where two people with brilliant, insightful minds identify the same problem at the same time and work towards different but complementary solutions. Cicely started the hospice movement in 1967 when St Christopher’s Hospice was opened. Elisabeth published On Death and Dying in 1969. The contribution they made to medicine and to society was immeasurable.
1957
DR CONRAD HYEM
In 1957 I worked in Poplar, East London, with an order of nursing nuns and was required to visit a Mr Hyem, who lived in one of the tenements known as Canada Buildings. They were densely populated and regarded as slums.
I climbed the stone stairs, went along the balcony to his flat, and was taken aback by a small brass plate on the door stating: ‘Dr Conrad Hyem, Doctor of Philosophy and Psychology’. The day book had called him ‘Mr Hyem’, so I assumed the ‘Doctor’ was the wit of some Cockney joker, to amuse himself and his mates. I raised my hand towards the knocker, but at that second the beautiful soaring tones of a violin sounded from within. I stood outside the door, holding my breath, staring unbelievingly at the door. A woman called out:
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