In the Midst of Life

DR ELISABETH KUBLER-ROSS

Elisabeth Kubler was born in Switzerland, one of triplets, weighing only two pounds. No one expected the tiny baby to live, but from the start Elisabeth was a survivor. She fought for life, and survived to be the author of the seminal work On Death and Dying.

She was thirteen years old when the Nazi armies marched into Poland, ruthlessly crushing the unprepared Polish Army as they attempted to defend their homeland, then rounding up hundreds of thousands of Jews, forcing them into trains and then taking them to … well, at the time, no one knew where. Elisabeth was a young girl, listening to a scratchy old box-radio with her family, and she bristled with anger as she heard the news. She made a silent promise to God that, when she was old enough, she would go to Poland and help the people to defeat their cowardly oppressors. Her father and brother later witnessed Nazi machine gunners shooting a human river of Jewish refugees as they attempted to cross the Rhine from Germany to the safety of Switzerland. Few made it to the Swiss side. Most of them floated down the river - dead. These atrocities were too great and too numerous to be hidden from a young girl already inflamed by the outrages, and she renewed her promise to God.

Yet she didn’t really believe in Him. Not the God of the Lutheran pastor who taught and terrorised the Sunday School children, anyway. The pastor was a cold, brutish, ignorant man, unloving and unchristian, whose own children turned up at school with bruises all over their bodies, and were always hungry. The other children gave them food, but when the pastor found out he beat his children savagely for eating it. After that they didn’t dare accept. Elisabeth didn’t believe in the pastor’s God. Maybe there was another one somewhere who loved little children. That Lutheran pastor turned Elisabeth against organised religion for the rest of her life. But she never ceased searching for the God of Love in whom she could, and eventually did, believe.

From an early age she was determined to be a doctor, but her father would not allow further education for girls, so she left school at fourteen to become a maid. After a year of skivvying for a rich woman she ran away and arrived at a hospital, offering to do anything. In those chaotic war years she was taken on and told to work as an assistant on the VD wards, in which all the patients were dying. Syphilitic patients were feared, shunned and locked away, but Elisabeth found them to be pathetic creatures who were warm and pleasant, and simply craved friendship and understanding. She opened her heart to them, and it was this mutual affection that prepared her for worse that was to come.

On 6th June, 1944, the combined allied forces landed in Normandy and the war changed. Thousands of refugees from all over Europe streamed into Switzerland. For days, then weeks, they marched, limped, crawled or were carried. The very old, the very young - all were half starved, ragged and verminous. Virtually overnight, the hospital was inundated with these traumatised victims of war.

For weeks, Elisabeth worked entirely with children who were mostly orphans, frightened and lost. De-lousing and disinfecting them was the first job, then finding clothes, then the search for food. She and another girl stole most of the food from the hospital stores, which seemed like a good idea at the time, but nearly had serious consequences. She was saved from the wrath of the outraged authorities by a Jewish doctor, who quickly arranged for the Zürich Jewish community to refund the cost of the food. He proved to be a powerful influence on her young life. He was a Polish Jew, and he told Elisabeth the horrifying stories of the concentration camps that had been built in Poland, and of the need for dedicated young people to go to his sad country to help with rebuilding. His words were another clarion call to Elisabeth.

On 7th May, 1945, all the bells of all the churches rang out in every country across Europe. People rejoiced, sang, danced, partied in the streets, got drunk. The war was over. It had lasted for six years, but the rebuilding would take much longer. Elisabeth joined the International Voluntary Service For Peace, and for four years worked with medical teams in some of the worst areas of devastation. When a team was assigned to go to Poland to set up a first aid station, she joined them, and went to Majdanek, a death camp, where 300,000 people had been gassed alive. She saw with her own eyes trainloads of children’s shoes and clothes, and trunks full of human hair that had been destined for Germany to make pillows. She smelled the sweet odour of the gas sheds, the smell of death, and the all-pervading stench of rotting corpses. She saw the barbed wire, the guard towers, the spotlights, and the rows of barracks in which men, women and children had spent their last days while they awaited their call to strip and form a line to enter the gas chamber, to fulfil the quota of exterminations for that day. She wandered around, numb with shock, and saw to her amazement, sketched on every wall of every barrack, hundreds of butterflies. What, in the name of Heaven, could impel people waiting in such conditions for their inevitable death, to depict the form of a butterfly? She did not know, none of us will ever know, but it was a concept that would fill her imagination, and haunt her for the rest of her life. It was this image, and the symbolic message sent out by these doomed people, that would eventually lead her to a belief in the God of Love.

It was only after four years of this voluntary work that Elisabeth returned to Switzerland, more determined than ever to become a doctor. She had to start night school in order to learn the basics of science from scratch. There was no help from her father or her tutors, who told her to go and be a housewife, a maid, a seamstress - academia was not for girls. But she had been trained in the harsh school of life and she knew the value of persistence. In 1957, at the age of thirty-one, she passed her final examinations and became a country doctor in the mountain villages north of Zürich. It was a happy time.

It is interesting to speculate on how life turns out for each of us, and how chance plays its part. Elisabeth always said it was the hand of God guiding her. If she had not met and fallen in love with a handsome American doctor, she would have remained a contented family doctor in rural Switzerland, probably married to a respectable burger, happy to settle down after the hectic adventures of her youth. Instead, she married Emanuel Ross, went to America, and entered the maelstrom of American hospital medicine. This was where her intellectual life, coloured by her early experiences of suffering, began. She had found her vocation.

Elisabeth had never really wanted to go to America, still less did she want the post of psychiatric resident at Manhattan State Hospital, but it was the only job she could get. She worked with the mentally ill for nearly two years, and learned a great deal about the psychology of the human mind, its dark recesses and closed doors.

One day her chief asked her to examine a man who was supposed to be suffering from psychosomatic paralysis and depression. The man also had an incurable degenerative disorder. Elisabeth examined him, and spoke with him at length. She had seen this state of mind before in the ravaged towns and villages of Europe, and she knew what it meant.

‘The patient is preparing himself to die,’ she reported.

The neurologist not only disagreed, he appeared embarrassed, and ridiculed her diagnosis, saying that the patient just needed the right medication to cure his morbid state of mind. Days later the patient died.

This encounter started Elisabeth thinking, watching, and noting her observations. She saw that most doctors routinely avoided mentioning anything to do with death, and the closer a patient was to dying, the more the doctors distanced themselves. She asked questions of her medical colleagues, but they avoided giving her direct answers, and she gained the impression that very few of them had been present at the bedside at the actual moment of death. ‘That’s not my department; I leave that sort of thing to the nurses,’ was the implied response. She questioned medical students and found that they were taught nothing about death and how best to handle a patient with a terminal illness.

At first she was intrigued, and not a little amused by the head-in-the-sand attitude of her colleagues, and wondered how it would be defined in the school of analytical psychology. But then she began to wonder what effect it had on the patients themselves; and she gravitated towards those who were the most sick and the closest to death. Her experience in war-torn Europe made it easy for her to talk to these people, and she would sit with them for hours. What she discovered, mainly, was the grief of loneliness and isolation. Very often a patient had first learned of the gravity of his condition by the altered behaviour of those around him – avoidance, evaded questions, lack of eye contact. The silence of physicians added to their fears. Relatives and friends, it seemed, were also engaged in a massive game of ‘let’s pretend’, thereby closing the door on empathy and understanding. There is not a single dying human being who does not yearn for love, touch, understanding, and whose heart does not break from the withdrawal of those who should be drawing near.

What she was observing was so at odds with her upbringing in her village in Switzerland, where a dying person was treated with love and compassion, that she thought it must be something peculiar to New York. But in 1962 the family – by now they had two children – moved to Denver, Colorado, and she and her husband got jobs at the University Hospital. Quietly, she continued her observations and discovered, to her astonishment, that the medical and social attitude to the dying was exactly the same in Colorado as in New York. Throughout America, apparently, death was a subject no one wanted to deal with.

‘This is a national sickness, more serious than anything I have seen on the schizophrenic wards,’ she opined.

Her new job was working on liaison between psychiatry and general medicine, covering all disciplines. The team was headed by a professor whose main interest was in measuring the relationship between the mental, emotional and spiritual with the pathology of physical illness. Elisabeth and the professor were on the same wavelength, and she was able to discuss with him the effects that rejection and non-communication had on terminally ill patients.

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:

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.