In the Midst of Life (9 page)

He was the first doctor with whom she had been able to express her concerns, and he understood, and encouraged her to continue her quest.

The professor was a brilliant and charismatic lecturer, and he drew large crowds to his weekly seminars, at which he discussed with students of all faculties how psychology and psychiatry could be applied to general medicine. One day, in 1964, he called Elisabeth to his office and said that he would soon be travelling to Europe for a period of time, and that he would like Elisabeth to take over his lectures.

‘I don’t follow a syllabus. You can choose your own subject. You have two weeks to prepare,’ he said.

Her first reaction was blind panic. She would never be able to take the place of this brilliant man, and hope to hold the attention of his audience. But it was an honour, and she knew she had to do it. Her subject would be death.

Her thesis was simple: doctors would be more comfortable dealing with death if they understood it better, and if they simply talked about what it was like to die.

She went to the university library to research the subject but found nothing that would help her. There were a few obscure and difficult psychoanalytical treatises, and a few anthropological studies about the death rituals of American Indians, Eskimos, Hindus and Buddhists, but nothing more. She had to write her own lecture, with no precedent and no references.

But a greater problem faced her. The professor’s lectures were two hours long – an hour for the lecture, then a break, and then an hour presenting empirical evidence and taking questions. How on earth could she present empirical evidence to support a thesis on death? It was impossible. Yet without it, her lecture would be a failure.

Elisabeth was still devoting her spare time to dying patients in the hospital, talking with them to try to ease their fears and loneliness. A young girl called Linda impressed her deeply. She was sixteen, and at an advanced stage of leukaemia. The direct and focused way in which she discussed her condition was
impressive.

She was comfortable and unembarrassed about it, and suddenly it dawned on Elisabeth that, if Linda could talk to the medical students, she would be the ideal person to tell them what it was like to be dying at the age of sixteen. Linda readily agreed to participate.

On the day of the lecture, Elisabeth was a nervous wreck. She stood on the podium and read from her notes. The students’ behaviour was inexcusable: they chewed gum, chatted, leaned back with their feet up, and sniggered; but, as the lecture drew to its close, their behaviour became more respectful. During the break Elisabeth brought in her brave sixteen-year-old and wheeled her into the centre of the auditorium. The girl was pathetically frail and thin, and she could not stand, but she was nicely dressed and her hair looked pretty. Her clear brown eyes and determined jaw showed that she was perfectly in command of herself.

The students sat nervously in their seats. No one spoke, no one put his feet up, no one even chewed gum. They were obviously feeling uncomfortable. Elisabeth introduced the girl, explained her condition, and said that she had generously and bravely volunteered to answer their questions on what it was like to be terminally ill, and to know that you have only a short time to live. There was a slight rustle as people shifted awkwardly in their seats, and then there descended a quiet so profound it was disturbing. Elisabeth asked for volunteers but no hand was raised, so she selected a number of students, called them on to the stage so that they would be close to Linda, and instructed them to ask questions. All that they could think of was muttered questions about her blood count, the size of her liver, and other clinical details.

Until then, Linda had been calm and was even smiling, but at that point she lost all patience with the students, and in a passionate fit of anger the floodgates of her frustration and loneliness opened.

‘That’s all you people ever think of – tests, tests, tests. No one ever thinks of
me,
as a person. You people hide behind your tests and charts so that you don’t have to talk to me. Me, who is dying, who is younger than any of you, but will never go to college, never
go out on a date, never get married and have children. No one ever talks to
me,
to try to know my thoughts and feelings. Until Dr Ross came the only person who wanted to talk to me was the black cleaning lady in our block. She is very poor, and all her people are poor. She was never taught to read or write, but she understands me and sees what I am going through, and she tells me not to be afraid – death is an old friend for her people, and is not so very frightening. Until Dr Ross came she was the only person who talked to me.

‘You people never talk to
me.
You stand by the bed and talk
about
me, as though I wasn’t there, and call me “she”. You won’t even look me in the eye. Are you afraid of me? Am I infectious? Do you people think you will catch death off me if you come too close? Even my family can’t mention the subject. If I try to speak of my dying to my mother, she changes the subject. Does she think I’m morbid or unnatural to think about death, when it’s with me every minute of every day? Do you know, she even put an article in the paper, advertising my leukaemia, and asking people to send me “Happy Sweet Sixteen” birthday cards. Hundreds of silly cards came to the hospital, all from strangers.’

She held up her frail arms to her spellbound audience, her cheeks flushed with anger and her eyes bright. ‘I don’t
want
silly meaningless cards. All I want is someone who understands what I am going through, who shows me they want to be with me, and who can tell me what is going to happen when the time comes for me to die.’

Linda was exhausted, so Elisabeth wheeled her back to her bed, and when she returned to the auditorium something had happened to the students. They were sitting absolutely still, in stunned, almost reverential silence. Some had been moved to tears. Elisabeth knew that no further words were needed. The girl had said it all.

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:

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.

(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.