In the Midst of Life

THE ADVANCE DIRECTIVE

Mrs Cunningham. The name was on the admission list for the day. Ovarian cancer, total hysterectomy at the Royal Free, and referred for radium treatment to the Marie Curie Hospital. The name rang a bell, and I remembered old Mrs Cunningham and the perpetual feud with her daughter – but was it the same person as the lady I had known when I was a junior student nurse?

Mrs Cunningham had had a minor operation, for varicose veins, I seemed to remember, the stripping of which in those days necessitated a fortnight in a hospital bed and a fortnight’s convalescence. Such a lengthy stay in hospital enabled patients and nurses to get to know each other, and she invited me to her home after her discharge. She was a very interesting lady, and also amusing in a la-di-da kind of way. Her husband had been in the diplomatic service and she had travelled all over the world with him. She had a sardonic humour and her comments were witty and pithy, and mostly directed against her long-suffering daughter, Evelyn.

Evelyn was a lady of about forty, a professional, with a first-class degree from Cambridge and a worn out expression, the latter acquired, no doubt, from her daily commute between Henley-on-Thames and London. Why they lived together, when they clearly hated each other, I could never make out. They would have been better off living apart, but they clung to each other with the horrible force of a lifetime’s habit. What had happened to Mr Cunningham I never discovered. They were both extremely reticent about him, but I gained the impression, rightly or wrongly, that he had disappeared with somebody else’s wife and a large sum of money.

One way or another, the two ladies were very hard up. They lived in a huge house in the best part of Henley-on-Thames, with a vast garden terraced down to the river, where they had a boathouse, but no boat. The house and garden were far too big for just the two of them, but they were too proud to give it up and move to something more suitable. And so they struggled on, Mrs Cunningham keeping house and tending the garden, which was really beyond her, and Evelyn earning the money, which just about kept body and soul together.

Mrs Cunningham had been all over India, Ceylon and North Africa with her husband, and as I had never been beyond the shores of England and was longing to hear about ‘those far away places with strange sounding names’, I cultivated her friendship. At the time she seemed to me very old, being sixty-two, but she had obviously had a very lively and adventurous life. In Morocco, at a time when all Moslem women were heavily veiled, she had dressed as one of them, and gone into the souks alone, something that few English women would dare to do, she told me.

‘It was the time of the French Protectorate, you know.’

No, I didn’t know. What did ‘Protectorate’ mean?

‘It really means domination. “What is it worth to you, if I don’t blow up your country?”’

‘That sounds dreadful.’

‘It’s common enough. All powerful countries do it, expanding their empires. But it wasn’t all bad. The French did a lot for Morocco, and a lot for me, indirectly, because it meant that I could converse with the women in the markets in French.’

‘Tell me about it, please. I’m dying to hear.’

‘Well, you have to get used to being woken up in the middle of the night by the muezzins’ calls to prayer, cried out from the mosques.’

‘The whatzzins?’

‘The muezzins, the callers.’

‘What sort of call?’

A noise like animals howling. It’s their religion. I can’t go along with it, myself. All religions are a lot of cant, in my opinion.’

She sniffed scornfully.

‘And you have to get used to never seeing a woman. I was about the only woman in the streets. If the women left their riads at all, they had to do so in groups, for mutual protection, I suppose, though I must say I was always alone, and none of the men molested me.’

‘What is a riad?’

‘An enclosed dwelling. It’s a kind of central courtyard with the dwelling areas all around it. I always thought this arrangement was a way of keeping the women locked up, but the men reckoned it was to protect them. There’s a very fine line to be drawn between protection and domination, you know.’

‘Tell me about the men.’

‘Well, they go around in these djellabas – long gowns with pointed hoods. Half of them look like Jesus Christ, and the other half look like Judas. I don’t think I ever spoke to a man unless my husband was present. Women couldn’t.’

‘Why not?’

‘Oh, I don’t know. Religion, perhaps. I wasn’t going to risk it. I wandered around alone and spoke to the women, but I thought I might be publicly stoned if I spoke to a man.’

‘Oh, surely not!’

‘Well, perhaps not. Perhaps I exaggerate. But I assure you, a woman could be stoned to death for adultery. Religion again! Let’s go out into the garden, dear. The sun’s come out, and you can help me to weed the rockery. It’s not often I get help. Evelyn won’t so much as lift a fork or a trowel.’

I reckoned that Evelyn probably did quite enough, earning the money, but kept my thoughts to myself.

Whilst we weeded, Mrs Cunningham continued:

‘The women did all the work in Morocco, as far as I could judge. “Women and donkeys always go heavy laden”, and by God, did they! Massive loads on their backs, and miles to walk. And if the woman had a baby on her back, the load would be carried on her head. Very often a strong young lad, a boy of fourteen or so, would walk beside her, carrying nothing. Though I must say a man would push a barrow or a truck. But he would never be seen carrying anything. He would lose face with the other men, you see.’

‘You were going to tell me about the markets.’

‘Ah yes. The souks. Fascinating. You would never see the likes here. Produce, food, animals, carpets, jewellery, ornaments – thousands of things brought in from miles around by donkey, and laid out on the sun-baked earth. Piles of fruit, fish, vegetables, meat, just stacked up on the ground. Great mounds of rice or lentils piled on a sack and weighed out by the bucket full. Meat, offal, lights, liver, brains laid on a sack, and swarming with flies, and the water seller going up and down, ringing his bell. Oh, it was wonderful! Here, for once, the women were in command, because they were the buyers. The men were the sellers, and in any economy the purchaser has the upper hand. I could have watched them for hours – the men wheedling and whining, the women firm and controlled. And the women always won.’

She leaned back on her heels and gazed up at the trees. ‘Oh, I’ve had a great life. I don’t know of any other European woman who dared to go alone into the souks, but I did. The colours, the smell of the spices, and the donkeys, the sun, and always the High Atlas mountains, snow-covered, in the distance.’

It sounded dreamy to me. I wanted to burst out of the constraint of my nurse’s training and take the first boat to Morocco. The very name of the country inspired dreams. But Mrs Cunningham was continuing:

‘The women had their fun, though, in the hammams.’

‘What’s that?’

‘The public bathhouse; hot, wet and steamy. You lie naked on the stone floor, heated from underneath by wood fires, and a bath attendant throws a bucket of water over you and starts rubbing you with soap and a rough cloth – to stimulate the follicles, they say. But, believe me, that’s not all it stimulates, I can tell you! All those women laughing and massaging each other! What happens in the men’s hammams doesn’t bear thinking of. Crowds of men and boys rubbing each other! Boys from the age of seven or eight – just think. There’s a dandelion there. Look! Try and get it out, will you?’

I had done enough weeding with my grandfather to know how to attack a dandelion.

‘Good girl. You’ve got the root. That’s more than Evelyn could have done.’

She chuckled a throaty laugh.

‘Poor Evelyn. What she needs is a good slide around in a hammam. She’s like a dried up bit of old soap – she needs a good rubbing and lathering in all that steam to soften her up a bit.’

She chuckled again, and I thought of poor Evelyn on the 5.30 from Paddington, returning to her clever and scornful mother and a few hours of guarded conversation and mutual backbiting.

But I liked Mrs Cunningham. It’s funny how you can see real nastiness in some people, especially in their relationships with others, and like them just the same. She was different, and I felt flattered that she seemed to enjoy my company.

She invited me to her house one Saturday afternoon, but when I arrived it was clear that she had forgotten, because she had gone to stay with her son, James, for the weekend, and Evelyn was there alone. I felt embarrassed and said I would go, but Evelyn pressed me to stay.

‘I suppose you’ve been hearing all about the souks and the hammams and the veiled women?’ she said.

‘Yes. Isn’t it fascinating?’

‘It probably is the first time you hear it, but when you get the same old stories over and over again, you can grow tired of them. Has she got to the one about the camel trek across the desert yet?’

‘No.’

‘She will. And the one about the time she wandered into a brothel by mistake?’

‘Wow! A brothel! That’s interesting. What happened?’

‘She’ll tell you. Nothing can be more boring than an old woman who lives constantly in the past.’

‘She’s had an interesting life.’

‘Yes, but she’s a scorpion when you get to know her. She drove my dear father into the arms of another woman, that’s for sure.’

I began to feel uncomfortable; getting involved in this female feud was something to avoid. I changed the subject.

‘She seems to have a lot of dislike for religion.’

‘Oh yes. She is a very enlightened woman, in that respect. My father was an atheist – or is, perhaps I should say. My brother and I were brought up non-believers. Really, it is the only rational way to think. Religion has had its day. I don’t know that any intelligent person can believe all that nonsense about virgin births and rising from the dead.’

I did not know how to answer. I was very young and impressionable. I had been brought up as a Christian, and had attended Sunday School, which entailed a lot of bible study, but I don’t think I was very committed. To hear this older woman, who was a Cambridge graduate, make such a statement shook me.

‘We are members of the British Humanist Society’ she continued.

‘What’s that?’

‘We believe that men and women are on this earth to do their best for one another, to act with goodness and kindness and justice for the common good. There is no divine intervention – that is just the wishful thinking of weaker minds.’ She glanced at me, and smiled a faintly superior smile. ‘I suppose you were brought up to believe that old business about God the Father, God the Son, etc.?’

‘Well, I suppose I was.’

I hadn’t heard anyone talk like that before, and it disturbed me.

‘Darwin proved conclusively that there is no God who made Man. Mankind has evolved over millions of years from the animal world. It’s all biology, not theology. Man made God from his imagination.’ She laughed derisively. ‘Anyway after the last war, what is there to believe? Nearly two thousand years of Christianity – “love thy neighbour as thyself” – and what did it produce? The German concentration camps.’

She had struck home. Nothing has ever horrified me as much as the newsreel pictures of the Belsen and Auschwitz victims which were first shown in British cinemas in 1945, and which I saw when I was ten years old.

‘I hadn’t thought of it like that.’

‘That’s because you were indoctrinated when you were a child. You need to be more of a free thinker.’

I felt ashamed. I didn’t know that I was indoctrinated. It was a horrid word, I thought. I wanted to be a free thinker.

‘You must take some of the newsletters of the Humanist Association. That will open up your mind. Now, let’s have a cup of tea before you go, and some cake. My mother is a good cook, I’ll say that much for her.’

I tucked into cake and biscuits, then cycled back to the hospital with a comfortably full stomach, but uncomfortable thoughts.

The next time I visited Mrs Cunningham, she was studying a document received from the British Humanist Association entitled The Right to Die.

Abruptly she said, ‘I have signed an advance directive, instructing that, if I become ill, and the illness is incurable, I request voluntary euthanasia. I have placed a copy of this document with my son, my daughter, my doctor and my lawyer.’ She looked thoroughly pleased with herself.

I had heard of euthanasia, but had not given it much thought. In the course of my work I had seen people die and had thought a good deal about death, but it had never occurred to me that we, in the medical professions, could actually put someone down as you would a dog.

‘It makes absolute sense. I don’t want to suffer needlessly. When my time comes I want my life to end swiftly and painlessly.’

‘That’s what everyone wants,’ I said.

‘Yes, and it’s everyone’s right – or should be. The law needs changing, and we Humanists are trying to bring it up in Parliament. Anyway, I have signed this directive. I consider it the only rational thing to do. I have discussed it with James and with Evelyn, and they both agree.’

‘What does your doctor say?’

‘He won’t commit himself. He says it would probably cause more trouble than it alleviates. But he respects my wish to die with dignity.’

‘Dignity? Wherever did you get that idea from? Death is not dignified, any more than birth is.’

‘Well, that’s the expression the Euthanasia Society has adopted.’

‘The people who run your society don’t know what they are talking about! No one dies with dignity. That only happens in the cinema when someone says a sad farewell, then his head falls sideways and he dies. It doesn’t happen in real life, I can assure you. Films either make death look romantic, or horrific. It’s neither.’

I giggled as only teenage girls can giggle.

‘I don’t think you are taking this seriously enough,’ Mrs Cunningham said severely. ‘Thoughtless girl. When my time comes, I want an easy death. I want to be able to go to sleep, like having an injection before an operation. You don’t feel a thing. When death begins to overtake me, and bungles the process of dying, I shall want a competent doctor to assist nature and make a good clean job of it.’

‘It all sounds too easy to me.’

‘I have always been in control of my own life, and I intend to be in control of my death.’

That had been almost ten years before, and when Mrs Cunningham was admitted to the Marie Curie Hospital I honestly didn’t recognise her: an old lady, very bent, with sparse straggly hair and a wild look about her. After surgery, she had spent a fortnight in a convalescent home to build her up and improve her strength before the radium treatment, but, nonetheless, she was so thin that every bone in her body stuck out. Her eyes were sunken, and her grey-white skin was drawn tightly over her high cheekbones, making her nose and ears look huge. Her lips were without colour and pinched tightly together above a pointed chin. No, I would not have known her; but she recognised me.

‘You’re the child I used to know in Reading, aren’t you?’

Yes, I am,’ I said with sudden recognition.

‘A stupid girl, I remember. What are you doing here?’

‘I’m the ward sister.’

I held out my arm to assist her as she walked. She pushed it aside.

‘Leave me alone – there’s nothing wrong with me. Ward sister, you say? That doesn’t sound too good. I dare say you are as ignorant now as you were then.’

She reached the empty bed that had been kept for her.

‘What do you mean by putting me here? I expected a private room. I’m not staying here with a lot of stupid old people!’

She glared angrily around her at the other patients.

I explained that the side rooms were for people who were very sick, and that people like her, who could get about, and were improving, were always nursed in the main ward. She looked at me steadily.

‘You mean I must be improving, or I wouldn’t be here?’

‘Yes, that is correct.’

‘Tell Evelyn that.’

‘Certainly, if you wish me to.’

‘Of course I wish you to! I wouldn’t have said it if I didn’t mean it. And tell my son, James, also. I told them both I was getting better, but they wouldn’t believe me. Fools, the pair of them.’

This didn’t look good, by any standards. I had known Mrs Cunningham as an active, strong-minded woman in her early sixties, with a sharp tongue and an independent spirit, but I certainly had not expected this would develop into such venom as she grew old. In our profession we often meet people whose bewilderment and frustration in the face of illness leads to anger, but this was excessive, and I did not like to think of the effect it would have on the other women in the ward.

The Chief came to see her that afternoon, and I accompanied him. She glared at us both.

‘About time, too. I don’t like to be kept waiting. Well? What are you going to do for me?’

He did not say too much, but examined her abdomen, and the scar from the operation, which was healing well.

‘We are going to take blood for tests.’

‘That’s not going to help me. I want proper treatment.’

‘We cannot start until we have the results.’

‘And how long will that be?’

‘A few days.’

‘A few days! That’s preposterous. I want treatment at once.’

‘We will give you tablets to prepare your body for the radium treatment.’

‘That’s something, I suppose. Why am I here at all? That’s what I want to know. I had a hysterectomy. Thousands of women have hysterectomies, then they go home and get on with life. Why do I have to come to the Marie Curie Hospital for radium? It makes no sense.’

This was always the difficult, nay, impossible, question to answer. At that time everyone knew that radium was given to reduce a growth, and most people think of a growth as cancer. But this need not always be so. Many growths are benign, many are encapsulated, and even a malignant growth can be reduced to a size of no importance. The Chief explained this to her, and said that surgery had removed the growth, and that the radium, which was the most advanced medical treatment of the day, would minimise the risk of it spreading to other parts of her body. She would probably have six treatments, which might be extended to ten, depending on the response of her body, which would be determined by her physical condition and blood tests. He chose his words carefully.

‘That’s what I wanted to hear.’ Mrs Cunningham’s sunken eyes glared at the Chief. Her thin lips spat out the words, ‘Advanced medical treatment.’

‘Yes. You will get the most up-to-date treatment that is available. This hospital is at the forefront of research, and our success rate is high.’

‘You must tell my son and daughter that. A high success rate – that’s what they need to know. Fools, the pair of them. What do they know about advanced medical treatment? Nothing! Not a thing.’

She gave a contemptuous grunt, with a curl of the lips, and repeated, ‘They know nothing.’

The Chief and I returned to the office.

‘I think she is going to be a difficult patient to handle,’ he said. ‘There’s something malign eating away inside her – and I don’t mean the cancer. There is something else on her mind.’

I told him that I had known Mrs Cunningham ten years previously, and that she had struck me as a highly intelligent woman – strong minded, independent, and humorous. He made no comment.

Two days later her son James came to see her. Halfway through the visiting hours she called loudly to one of the nurses, ‘Take him away! I won’t have him here. Get him out of here.’

I was busy checking drugs received from the dispensary, and ordering more, but when I heard the angry, raised voice, I went to see what was going on. Poor James, looking embarrassed, was leaving the ward.

‘Don’t come back. And tell that interfering sister of yours I don’t want to see her, either,’ his mother’s voice shouted as he left.

‘What on earth is all this about?’ I said as he passed. ‘Please come to the office with me. Your mother has been angry and aggressive ever since she was admitted.’

We sat down.

‘Now what was said? Why this outburst?’ I enquired.

‘I simply told her that I thought she should not have any more treatment, and that the time had come when she should accept the inevitable, and die with dignity.’

Oh dear, I thought, so was this the origin of the fear and anger? ‘Please go on,’ I said.

‘Well, it’s perfectly obvious that she is dying. The cancer is spreading. She doesn’t need more treatment. She just wants an easy way out. We all do.’

‘Yes, I know. You are quite right,’ I said, encouraging him to go on.

‘I reminded her that she had signed an advance directive years ago, and had renewed it annually.’

‘That’s interesting. Please tell me more.’

‘She has been an active member of the British Humanist Society – we are all members, the whole family – and voluntary euthanasia is high on their agenda.’

‘Euthanasia is illegal,’ I reminded him.

‘Yes, I know, but an advance directive saying that no more medical treatment should be given after a certain point, is not. It is perfectly within her legal rights to refuse further treatment.’

‘It is. But at what point do we begin withholding medical treatment?’

‘Now, of course. She is not going to get better. Anyone can see that. She’s had a good life, and she’s a good old age. The time has come to lay it down.’

‘But your mother does not see herself as being at the end of life.’

‘I can’t understand it. She was always so clear-sighted, so positive in her convictions. She knows quite well that treatment beyond the point of no return can frequently cause more suffering than the original disease. But now, she won’t accept it, and gets furious with me and humiliates me in public. She had a blazing row with Evelyn on this subject a few weeks ago. Evie told me about it, but I thought it was just another mother and daughter row. They’re always getting at each other, you know. Well, I’m damned sure I’m not coming in to visit her again, only to be shouted at.’

He spoke in an aggrieved tone, and stood up to go.

I told him that his mother was angry because she was afraid, and that she would probably get over it. I expressed the hope that he and Evelyn would both visit, because everyone needs the family to be there at the end of life.

Immediately after visiting hour had finished, Mrs Cunningham called me over.

‘Get the consultant,’ she demanded, ‘I must speak to him. Get him at once.’

I explained that a consultant is not on call at a moment’s notice, but that I would ask him to come as soon as he was free.

She exploded with rage, and was very insulting to me, and to the medical hierarchy in general. She was creating a scene, and this was having a bad effect on the other women in the ward. I began to think that we might have to put her in a side ward after all.

‘Well, don’t let my son or daughter in. That’s an order,’ she shouted.

The Chief came after supper, and I told him of the afternoon’s events. He sat, tapping his watch, before he spoke.

‘The Euthanasia Society has gained in influence as medical knowledge has been able to prolong life which, it must be said, is not always a good life. I will speak to her, and I would like you to be with me, as a witness, if nothing else. We cannot have this conversation in the middle of the ward, so ask her to come here, please.’

Mrs Cunningham came to the office. I could see as she walked that her son was absolutely right, and that she was a dying woman.

She confronted the Chief even before she sat down.

‘Don’t you listen to my son or my daughter. They’ll tell you not to let me have any more treatment. They hate me. They want to get rid of me, especially Evelyn.’

She blurted it out, hardly pausing for breath.

‘There’s nothing wrong with me. I’m as strong as I ever was, but they want me out of the way. Don’t you listen to them.’

She jabbed her stick in the air to emphasise her words.

The Chief said that he would always listen first to the wishes of a patient.

‘But what if I can’t express myself? Then they will sneak in and twist your mind. They are very persuasive, and not to be trusted. I don’t trust doctors; they are all as bad as each other. I’ve signed up. They will use it. That’s what you want, the whole damned lot of you. I know what you’re up to. You can’t fool me.’

She was becoming irrational. Evidently this business of an advance directive had been playing on her mind to such an extent that she couldn’t think straight.

The Chief explained that an advance directive had no legal validity whatsoever, and was certainly not binding on the medical profession; but either she did not hear him, or could not take it in.

‘The best treatment is what I demand. Forget James and Evelyn. They are ignorant, prejudiced, stupid …’ She rambled on, repeating herself, contradicting herself. We listened to her tirade, and the Chief again told her that she would have the best treatment available. Unconvinced, but unable to say more, she returned to her bed.

From then on, Mrs Cunningham’s whole existence became paralysed by fear. Her fear of death amounted almost to madness, and an overwhelming feeling of helplessness rushed in upon her. She was lost; she panicked; she prayed to a God she did not believe in; she lost control; she screamed for advanced medical treatment, and railed that treatment was being withheld because James and Evelyn had influenced the doctors. Craven fear had roused her whole mental machinery to a state of agitation that had taken away all fatigue, all possibility of sleep, all sense of self-respect. It was a distress impossible to soothe. Drugs could have helped her, but if we went near her with a syringe she screamed uncontrollably that it was all part of the plan to do her in. She was beside herself with terror, and this reduced her to a jabbering wreck, devoid of all self-control and dignity.

We had to move her to a side ward, because of the effect she was having on other patients. She shouted that she knew why we had put her there; it was because of hospital secrecy. She knew what we were up to; all doctors were rogues and nurses were hand in glove with them. She demanded to see her lawyer, the police, her Member of Parliament. Her mind was obsessed, and nothing could divert it.

The laboratory report on the blood tests returned. Widespread metastases of the cancer were evident. The radium treatment should be started, but the Chief hesitated, because with the malignancy circulating through her entire body via the venous and lymphatic systems, it would probably be ineffective and would be distressing to her for no benefit gained. But she became hysterical and screamed that we were deliberately withholding the treatment she had been promised, and which it was her right to receive. So the Chief ordered a low dose, by way of a placebo. But when she was wheeled on a trolley to the treatment rooms, her fear became uncontrollable. In those days the radium treatment was carried out in a huge machine, into which the patient was wheeled, and the machine closed. She got halfway in, and then panicked. She shouted that we were putting her into a coffin to dispatch her while she was still alive. She thrashed about, and beat the sides, screaming for release. All the radiographers could do was return her to the ward.

Poor lady. She was so weak, and she was dying, but fear possessed her and filled her failing body with an agitation that allowed her no rest, day or night. She was suspicious of everyone, and the room seemed reduced in size by her wakeful, watchful eyes. It was pitiful to see, and impossible to calm. She would take no drugs, not even sleeping pills, and then she accused us of withholding essential treatment.

Illness is a revelation; one sees things one has never seen before. We saw, in Mrs Cunningham, a manic fear of death, which was not fear of cancer, because she did not believe she had it. Her fear was that death would be forced upon her because that was what she had always said she wanted. Day by day, hour by hour, she anticipated it, and the waiting nearly drove her mad. In fact, I think it did drive her mad.

Illness can also bring a flowering of love between people. That is one of the reasons why nursing is such a wonderful profession – we see these things. But for poor Mrs Cunningham, love was denied her at the end. She was convinced that her son and daughter were going to implement the advance directive that she had signed and re-signed. The idea was nonsense, of course, everyone knew that, but you cannot reason with obsession.

Evelyn came to the hospital several times, but her mother would not see her, and told the staff to ‘drive her away’. True to his word, James did not come again, but I have memories of Evelyn’s sad face as I took her final gifts of flowers and a bed jacket, and told her that she could not be admitted. The reconciliation between mother and daughter, which would have eased Mrs Cunningham’s last days and consoled Evelyn in her bereavement, was denied them both.

Mrs Cunningham’s mind and body could not withstand so much tension. The frenzied activity wore her out. She could no longer shout and scream, but she sobbed out of a sense of injury and injustice. She called upon God and wailed for mercy. Her terrified state of mind pursued her into her sleep and dreams, for the night nurse reported that she often woke in the night with a dreadful start and wept convulsively.

Mercifully, it did not last too long. Gradually, her mind became clouded, as it usually does as death approaches. Movement, speech, perhaps even thought, required more effort than she could command. Her breathing, circulation, and metabolism slowed down. Death overtook her, and calmed her, and, at the end, she learned that there was nothing to fear.

‘Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.’

— Vaclav Havel, playwright and

President of the Czech Republic, 1993—2003