In the Midst of Life (8 page)

If people were with their elderly relatives all the time, day and night, as nurses are, they would be able to see for themselves the suffering and manifold indignities caused by the strenuous efforts to maintain life. Then perhaps they would be more inclined to say, ‘Enough is enough – and no more.’ Such a statement from a layman to a medical team is, I know, incredibly difficult. But the professions will usually accept it, and frequently with relief and gratitude.

Not infrequently an elaborate game of double-bluff is going on. Medical teams find it hard to suggest ‘no more, this is futile’ because they fear the reaction of relatives; at the same moment, relatives are perhaps thinking the same thing, but feel constrained
from saying so in case someone thinks them callous or avaricious. No one will speak openly and truthfully. And whilst this is going on, a helpless old person at the end of life is unable to die.

Death, of course, will win in the end. But not the old-fashioned Angel of Death, nor even the dark Reaper, with the swish of his scythe. No, it will be the modern, hospitalised death, accompanied by the hum of a hydraulic airbed, and the bleeping of electronic monitors fixed to our fragile hearts and arteries, of flashing lights and drugs and drips and suction machines. All the paraphernalia of modern technology will guide us to our graves. We, who are growing old, cannot expect our children, and still less our grandchildren, to be with us at the hour of our death. We cannot, realistically, expect even a nurse to be with us. Machines do not need a nurse, unless the red light flashes on the central monitor, indicating that a drop in blood pressure or cardiac arrest has occurred, and then it is more likely to be a resuscitation team than a nurse that comes to watch and
to wait.

I swear by the music of the expanding universe

and by the eloquence of the good in all of us

that I will excite the sick and the well

by the severity of my kindness

to a wholeness of purpose. I shall apply my knowledge,

curiosity ignorance and ability of listen.

I shall co-operate with wondering practitioners

in the arts and the sciences,

with all who care for people’s bodies and souls,

so that the whole person in relationship

shall be kept in view, their aspirations and their unease.

The secrets of the universal mind

I shall try to unravel to yield beauty and truth.

The fearful and sublime secrets told to me in confidence

I shall keep safe in my own heart.

I will not knowingly do harm to those in my care,

I will smile at them

and encourage them to attend to their dreams

and so hear the voices of their inner strangers.

If I keep to this oath I shall hope for the respect of my teachers,

and of those in my care and of the community,

and to be healed even as I am able to heal.

— David Hart

(1926 - 2004)

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.