CARDIO-PULMONARY RESUSCITATION (CPR) IN HOSPITAL

 

In 2008 I was visiting a friend who was in an acute medical ward of a large county hospital. I walked directly into the single room where I expected to find her, but she was not there; she had been moved to the main ward. In the bed was an old, old lady who looked as near to death as anyone I have seen. Her skin was as white as the sheets, her eyes sunken and rolled up towards her forehead; her cheeks were hollow, her mouth hung open, and her breathing came in ragged gasps. In my nursing days, we would have assessed that she had only a few hours to live and the ward sister would have instructed a nurse to sit beside her, just to hold her hand or to stroke her hair, or to whisper a few words now and then.

There was not a nurse in sight. Two gently humming machines were her only companions. Monitor pads were stuck to her arms with wires leading to one machine where lights flickered and a graph line was being traced. The other machine had wires attached that disappeared under the bedclothes. An oxygen cylinder hissed continuously, and a transparent catheter was attached to her nose with sticking plaster. A saline drip running into her arm and a urine drainage bag hanging from the bedside completed the picture.

I stood gazing at her for a couple of minutes thinking, Poor old lady. What have you done to deserve this? She was a total stranger to me, and I knew nothing of her medical history, but as the bed was in acute medicine, the likelihood is that she had collapsed from acute coronary failure caused by a heart attack. Someone had found her and called an ambulance, and this was the result. Nearly dead, surrounded by advanced medical technology, and not a soul around, except a stranger who had walked in by mistake.

This is what most of us can expect, unless we are very lucky. If anyone collapses, from whatever cause, at home or in a public place, the chances are that they will be taken to hospital. Only the medical team involved knows what goes on in the resuscitation room of a hospital, because lay people are excluded. When my mother died, I was pushed out and the doors were locked on the inside. There may be good reason for this, such as the risk of introducing infection into the room, but I suspect it is more because a relative may try to stop what is going on.

Sherwin B Nuland was a consultant surgeon at Yale University Hospital and teaches surgery and the history of medicine at Yale. In his remarkable book, How We Die, published in 1995, he has described the process of hospital resuscitation as accurately and objectively as any medical man can for the lay readership:

 

Having countless times watched those teams fighting their furious skirmishes, and having often been a participant or their leader in years past, I can testify to the paradoxical partnering of human grief and grim clinical determination to win that actuates the urgencies swarming through the mind of every impassioned combatant. The tumultuous commotion of the whole reflects more than the sum of its parts, and yet the frenzied work gets done and sometimes even succeeds.

As chaotic as they may appear, all resuscitations follow the same basic pattern. The patient, almost invariably unconscious because of inadequate blood flow to the brain, is quickly surrounded by a team whose mission is to pull him back from the edge by stopping his fibrillation or reversing his pulmonary oedema, or both. A breathing tube is rapidly thrust through his mouth and down into his windpipe so that oxygen under pressure can be forced in to expand his rapidly flooding lungs. If he is in fibrillation, large metal paddles are placed on his chest and a blast of 200 joules[4] is fired through his heart in an attempt to stop the impotent squirming, with the expectation that a regular beat will return, as it frequently does.

If no effective beat appears, a member of the team begins a rhythmic compression of the heart by forcing the heel of his hand down into the lowest part of the breastbone at a rate of about one stroke per second. By squeezing the ventricles between the flatness of the yielding breastbone in front and the spinal column in the back, blood is forced out into the circulatory system to keep the brain and other vital organs alive. When this form of external cardiac massage is effective, a pulse can be felt as far away as the neck and groin. Although one might think otherwise, massage through an intact chest results in far better outcomes than does direct manual compression.

By this point, IVs [intra-venous drips] will have been inserted for the infusion of cardiac drugs, and wider plastic tubes called central lines are being expeditiously inserted into major veins. The various drugs inserted into the IV tubing have assorted purposes: They help to control rhythm, decrease the irritability of the myocardium, strengthen the force of its contraction, and drive excess fluid out of the lungs, to be excreted by the kidney. Every resuscitation is different. Though the general pattern is similar, every sequence, every response to massage and drugs, every heart’s willingness to come back – all are different. The only certainty, whether spoken or not, is that the doctors, nurses and technicians are fighting not only death but their own uncertainties as well. In most resuscitations, those uncertainties can be narrowed down to two main questions: Are we doing the right things? And should we be doing anything at all?

Far too often, nothing helps. Even when the correct answer to both questions is an emphatic ‘yes’, the fibrillation may be beyond correction, the myocardium unresponsive to the drugs, the increasingly flabby heart resistant to massage, and then the bottom falls out of the rescue attempt. When the brain has been starved of oxygen for longer than the critical two to four minutes, its injury becomes irreversible.

Actually, few people survive cardiac arrest, and even fewer among those seriously ill people who experience it in the hospital itself. Only about 15 per cent of hospitalised patients below the age of seventy and almost none of those who are older can be expected to be discharged alive, even if the CPR team somehow manages to succeed in its furious efforts.

It has probably been known for centuries, even millennia, that the heart can stop, and be restarted, although nothing was written about it for posterity. Nearly two hundred years ago, a Dr Silvester described how it could be done, by laying the patient on his back and raising the arms, to aid inhalation, then lowering the arms and pressing them against the ribs, to aid exhalation. It is not recorded whether anyone believed him in the early 1800s.

A century later, the idea was taken up by several doctors, and a similar technique described, combined with mouth-to-mouth resuscitation. This technique was included in Scouting for Boys by Baden-Powell, published in 1908. Few other people took it seriously, and certainly not the conservative medical profession, who always take decades to accept a new hypothesis. But, for the whole of the first fifty years of the last century, it was vaguely known that if you fished someone out of the canal, or something like that, mouth-to-mouth puffing and rubbing the chest could sometimes be effective in restoring life.

Eventually, in the 1950s, the medical profession got on to the idea, and the modern techniques of cardio-pulmonary resuscitation (CPR) were developed at the Johns Hopkins Medical Research Faculty in Baltimore, USA – although many other medical teams in other countries were working on the same theories. Within a decade, their findings and teaching had gained widespread acceptance throughout western medicine.

Different techniques were developed and experimented with. The open-heart resuscitation that I witnessed being applied to Dr Hyem, was the first method adopted by the medical profession, and its popularity lasted for around ten years. It has been replaced by electrical impulses, or shocks, directly administered to the heart, which are no less violent, but more effective. The giant international drug and engineering companies started competing with each other for the huge financial gains to be accrued from producing ever more powerful cardiac stimulants, and manufacturers of surgical equipment bent all their efforts into resuscitation technology. It was big, big business.

From the 1970s onwards in the UK (earlier in America), the intensive care unit and resuscitation became central to clinical practice, and no hospital could afford to be without the latest techniques and equipment. ‘Crash’ was all the rage. Everyone was very gung-ho about it and cheerfully tried it on almost any dying or dead patient. Young doctors, nurses, and technicians had to be taught the techniques and older ones needed to practise. Pompous old consultants and starchy old ward sisters who questioned the technique were told to get up to date and live in the real world. Those who warned about ‘playing God’ were told they were religious fanatics and everyone would be better off without them.

Those were exciting days to be in medicine. Anything was possible. We could conquer death itself. Job vacancies appeared in the Nursing Times: ‘Be in the Front Line. Be a Life Saver. Join the Resuscitation Team. Work in the Intensive Care Unit at Hospital. Apply in writing.’ Adverts like this were quite common, and I attended a conference where this type of wording was strongly condemned by the RCN.

Exhilaration was in the air; but then, slowly, the demoralising feeling sneaked up on us that something was not quite right. Respect for the dead had been thrown out of the window.

 

*

 

The speed with which resuscitation swept through the medical profession was astonishing, and it was far too quick for it to be properly thought through. Drugs were introduced with bewildering haste – too hasty for proper trials to have been conducted. I gained the impression, in those days, that new cardiopulmonary drugs were tried on patients, the attitude being, ‘He’s dead, anyway, so there’s nothing to lose.’ The equipment and the voltage of electricity was hit or miss because no one really knew how far to turn up the dial. Medical and paramedical staff had to master techniques that could only be learned on the job.

When I was a staff nurse at the London Hospital, we had a death on the ward. I was off duty at the time, but the next day the ward sister told me that she went behind the screens about twenty minutes after the patient had died to ensure that the eyes were closed and the chin supported, and found two young doctors trying to insert a central line into the iliac vein in the groin.

‘What are you doing?’ she demanded – ward sisters had a presence in those days. The young men looked up at her guiltily.

‘Have you no respect for the dead?’ she said contemptuously, as she covered the body with a sheet. They said nothing, and went away.

My sister Pat is a Queen’s Nurse (Queen Alexandra Royal Army Nursing Corps). She trained from 1965–69, mostly in Singapore. She returned to England in 1969, to Aldershot Military Hospital, and was put straight on to night duty. The first night, she took the report and was told that if an emergency occurred she must press the AMSET button (Army Medical Services Emergency Team), but she was not shown where the emergency button was situated.

She did the usual drug round and noticed that a man was not in his bed. Thinking that he would return later, she finished the drug round, which took about half an hour. By then, he still had not returned, so she went to look for him. She couldn’t get into the lavatory, and so she crouched down on the floor to peer under the door, and saw two feet sticking up. Her first thought was to press the AMSET button, but she didn’t know where it was. She searched everywhere, poor girl, but still couldn’t find it. So she telephoned the night sister, who called the emergency team. They came with mobile resuscitation equipment and dragged the dead man out of the lavatory.

Pat told me that he was quite cold and stiff, and must have been dead for some while, because she had done a complete drug round and then spent time searching for him, then more time searching for the AMSET button, before the team arrived. Nonetheless, with all the drugs and equipment at their disposal the team attempted to resuscitate.

Pat said, ‘He was an old man, bless him, over seventy, and he was sick. I watched it all with horror, all that violence. There was no way they could get him back to life; he was quite dead, stiff and cold. But they carried on. Eventually, they gave up, of course. He had had a ruptured aortic aneurysm.’ A ruptured aneurysm is not cardiac arrest, so resuscitation attempts in this situation were futile and inappropriate.

When I trained at the Royal Berkshire Hospital in the 1950s, there was no resuscitation. My niece, Joanna, trained at the same hospital twenty-five years later, and I asked her how much of it went on. She said,

‘It was relentless, every day on every ward throughout the hospital. Every bed had a crash button beside it. There were half a dozen crash boxes around the ward, and the crash trolley placed centrally. If anyone died the nurses had to rush to the bed, press the crash button, detach the top and bottom of the bed, lie the patient flat with no pillows and start banging hard on the chest, pumping the sternum up and down to force a heartbeat, whilst a second nurse had to do mouth to mouth resuscitation until the crash team arrived. Then they started intensive resuscitation with drugs and electrical equipment. All nurses had to do this; it was a rule and was absolutely enforced. There was nothing we could do about it. We young nurses would ask the sisters, “Why? Why old Mrs C or why Mr S? Why is he not No Crash? He’s terminally ill. He’ll never get better.” The sister would say, “I don’t know, but we’ve got to do it. All I can say is don’t rush, don’t be in too much of a hurry to press the crash button, don’t bang too hard on the sternum – if you can delay things for a few minutes, he might be able to die before the crash team can get at him.”’

I told Joanna about the solemnity in a ward that had accompanied a person to their death when I was a young nurse. She said, ‘Well that’s all gone. When I trained it was rush, noise, panic, even shouting sometimes.’

I asked Jo what the success rate was. She thought a bit, then said, ‘Very low. I can’t really put a percentage on it, but very low. The trouble was that very often the body would twitch, and they thought this was a sign of life, and when the electric current hit the heart the body would really jerk – again, taken as a sign of life. But it’s not, at least not necessarily. There can be a twitch, more than one, after death, which I think is part of the nervous system shutting down.’ I agreed with her, and said that quite often I had seen someone die, and then, a minute or even two minutes later, suck in a great noisy gulp of air, which is called an ‘agonal gasp’.

She laughed and said, ‘I’ve seen that too; and heard it. It can be really scary, especially if you are a young nurse in the middle of the night, and you are not expecting it … spooky!’

I joined her laughter and commented that medical people are known to have a black sense of humour.

‘Too true. We need it,’ she said.

These are just a few examples from a family of nurses to illustrate the frenzy that overtook medicine during that period of medical history. It also illustrates that medicine, like any other profession, is prone to fashions. Today, in the twenty-first century, there is more discrimination in undertaking resuscitation, but even so, the prognosis is poor. Nuland stated that only fifteen per cent of hospitalised patients below the age of seventy would survive cardiac arrest and resuscitation, and almost none over that age. That proportion has remained unchanged.

Yet, even with more selection, a lot of resuscitation goes on in hospitals. Doctors know that in most cases it will be futile, so why do they carry on doing it? The answer is two-fold. Firstly, and most importantly, for the sake of the fifteen per cent who do survive. The second reason is more complex. The burdens placed upon doctors and nurses by public expectations are crushing. Doctors feel blamed for every death and, driven by a combination of guilt and doubt and fear, they strive all the time to save a life. They know that if they don’t make the maximum effort, and someone dies, they could be in serious trouble, which could destroy a career. The fear of litigation is ever-present.

Yet the public, and particularly the media, are so fickle that, having saved a life, doctors are then often accused of needlessly prolonging life and causing suffering. Whatever they do they will be in the wrong. Sometimes I wonder why anyone ever becomes a doctor or a nurse at all!

The heyday of resuscitation in hospitals was around 1970-95. Since then, much more restraint and discrimination has been observed. Doctors are now more ready to write a Do Not Attempt Resuscitation (DNAR) order if it is foreseen that a patient has a diagnosed condition with progressive advanced illness from which they will not recover, and for which resuscitation would be futile. Details of the General Medical Council (GMC) directive to doctors issued May 2010 can be found in Appendix I.

To discuss the prognosis with the patient is ideal, but it is often difficult, or plain impossible. Some patients are not approachable on the subject of their own death; some doctors cannot bring themselves to mention the dreaded word, and, in that case, an experienced nurse may be better. Some patients, surprisingly, have never even thought about it and say, ‘I don’t know - I leave it to you, Doctor.’ Others say, ‘I want to go when my time comes.’ Everyone is different, every doctor and nurse is different, and every clinical situation is different. What is necessary, in all ‘Would you want to be resuscitated?’ situations, is time. Such a discussion, if handled sensitively, could take all afternoon - and who, in the busy setting of a modern hospital, has that amount of time at their disposal? Probably no one. So an informed discussion is often hurried, even rushed, or pushed aside for a day that never comes.

Everybody must think about these things and discuss them with family, friends or carers long before a nervous young doctor tentatively raises the issue, or a lady with a clipboard comes round and says, ‘I’m filling in a patient’s questionnaire – do you want to be resuscitated? Shall I put a tick in the box, or not?’

At this point, it must be emphasised that resuscitation is the only medical procedure for which you have to say, quite specifically, that you do not want it. In the absence of such a refusal, resuscitation will be attempted.

What happens if the patient cannot make this decision? It used to be the law that no one could make such a decision for another person. But the Mental Capacity Act, 2009, alters that. An assessment must be made thus:

1. Can the patient understand and retain the information?

2. Can he/she weigh the risks versus benefits?

3. Can he/she rationally come to a decision?

If the answers are negative, relatives, close friends, and long-term carers can assist, or even make a decision, providing he or she does not stand to gain financially from the death of the person involved, and providing he or she is rational and reasonable.

The Reverend Mother of a convent I know well, told me that Sister K had suffered a severe cerebral haemorrhage and was taken to the local hospital where the bleeding continued. When the Reverend Mother arrived at the hospital, the staff had Sister K on a trolley, and were on the point of transferring her to the neurological surgery unit of the City Hospital several miles away. Reverend Mother, who was an experienced nurse and midwife, said, ‘I could see at once she was dying, so I said to the staff nurse, “Look, she is not going to recover. Is this necessary? Can you not put her back in bed and leave her to die in peace and with dignity? I will stay with her.” And they did. Sister K died peacefully and prayerfully a few hours later.’

In preparation for this book, I visited the archives of the Royal College of Nursing in Edinburgh. The archivist told me that her sister had trained in Dublin at a time when nuns ran many of the hospitals. She said that the nuns always seemed to know when someone was going to die, and they weren’t afraid of death, they knew how to handle it. On the same visit, I also spoke to several nurses and care assistants. In the course of conversation, a senior cardiac nurse said, ‘Death in hospital is a violent event,’ and the others agreed with her.

Most emphatically, we don’t know how to handle it. It’s no good blaming the medical profession. There is a collective responsibility here. We have lost the ideal of reverence at the hour of death, and put our faith in science and technology instead. That is what has transformed the natural and peaceful ending of life into a violent event.[5]

 

‘How people die remains in the memory of those who live on’

— Dame Cicely Saunders

 

999

 

Beatrice is a friend of mine. She and her husband are farmers, and I rang her to order some meat for the weekend. She told me that the family had had a very stressful time.

‘My mother died nine days ago. She was seventy and had suffered a heart attack. She’d had one twelve years ago when she was only fifty-seven, but had recovered, though she had to take it easy. She knew the heart wall was thin, but she was OK.

‘My sister Kelly went to her house to take her shopping, and found her dead in her chair. Kelly dialled 999. The voice that answered ordered her to lift our mother on to the floor and start resuscitation by compressing the sternum to restart her heart. Kelly obeyed. While she was carrying out the instruction she heard a crack from the ribcage. She says she will never forget that crack. Two men arrived very quickly and cut off Mum’s nightdress and started work. Kelly telephoned me, and I came. It took me about twenty minutes to get there. As soon as I walked in, I could see Mum was dead – I’m a farmer, I see death all the time, and there’s no mistaking it. The men were working away with their equipment. I pleaded with them, “Stop it. Can’t you see she’s dead?’ They just replied, “We’ve got to. We can’t stop yet.” I shouted back, “Well, you won’t be doing her any favours even if you do bring her back to life. Her brain will be dead by now.” But they wouldn’t stop. Eventually, the ambulance arrived, and then the paramedics took over.

‘It was a dreadful time. My poor sister – she’s in such a state of shock. She says she can’t get the sound of that crack out of her head. I don’t know when she will get over it.’

Beatrice was talking fast, the words tumbling out. Then she paused and spoke more slowly and thoughtfully. ‘The trouble is, we’d never discussed it, never asked Mum what we should do if she had another heart attack. We all knew it was possible – in fact, if I’m honest, we knew it was quite likely after the last one. But that was twelve years ago, and I suppose we had put it out of our minds. We should have discussed it. I think everyone should. It would have saved her, and us, from all that dreadful business. I don’t like to think what my poor sister is going through. She blames herself, of course, but it wasn’t her fault. I think everyone should discuss these things.’

It was a couple of months before I managed to speak to Kelly. I had asked, but perhaps she did not want to talk to me or anyone else so soon. But a couple of months later, after she had been on holiday, she felt ready to re-live that fateful morning.

Kelly told me, as Beatrice had, that she had driven to the house to take her mother shopping, and found her dead in her chair.

‘She was sitting quite still and peaceful, but absolutely dead – there was no mistaking that. I reckon she had been dead for quite a long time, because she was in her nightie. When she was expecting me for our weekly shop, she would always be up and dressed by about 9 o’clock. But it was 10.30 and she was still in her nightie … so I reckon she died before 9 o’clock.’

Her voice was very quiet, and it faltered several times as she spoke. She continued:

‘I didn’t know what to do … I suppose the shock made me panic. My first thought was, I must get help, so I rang 999. I spoke to a man, who said, “I have ordered the ambulance crew, and until they get there you must start resuscitation.” I said, “It’s too late, she is blue.” He said, “No, you must.” I repeated, “It’s much too late. She’s quite dead.” He ordered, “You have got to. Get your mother on to the floor, and do as I say. I’ll talk you through it, until they arrive.” I struggled to lift my mother, and told him, so he said, “You must get her off the chair and on to the floor.” I ended up pulling her. It was an awful thing to have to do.’

I gently asked, ‘Why did you do it? You don’t have to do what a voice on the telephone tells you to do.’

‘No, I know. But I suppose I was numb with shock … I don’t know …’ Her voice trailed away. ‘Then he said, “Start firm, hard pressure on her breast-bone, rhythmically, about two beats per second. I will count you through, start now – one, two, one two.” I did … and then … I heard that crack, from her ribcage.’

She couldn’t speak after that for a long time. I didn’t know what to say. I think I murmured, ‘You poor soul,’ or something like that. Eventually she was able to carry on.

‘Two men came and took over. They pushed a tube down into her windpipe and pumped in air, or perhaps it was oxygen. They cut open her nightie and wired her up to a machine, which they switched on. I couldn’t bear to see her like that, on the floor, she was so modest, her nightie pulled away, and two men over her. I tried to cover up her lower parts, so she wasn’t too exposed – it was silly, really – but I kept thinking how mortified she would have been.

‘I went and telephoned Beatrice. There was nothing I could do. The men carried on for ages. They were talking to each other and I heard the words “an atrial response”. My sister arrived, and asked them to stop, but they wouldn’t. Mum’s colour began to return. She had been very grey, but the pink colour was returning to her skin. Then the ambulance arrived. Two paramedics came in with more equipment. I don’t know what it all was. They started injecting her feet, about one injection every few minutes, and Mum was looking much better, in fact she looked quite normal; she just wasn’t breathing.

‘Beatrice was getting quite upset and begged them to stop – they said they could detect a response – she shouted that it was the oxygen making her look better, and there was no response because she was dead, couldn’t they see that? But they took no notice and carried on. They must have been at it for more than an hour, because it was getting on for 12 o’clock when they finally gave up.’

Kelly was so distressed, I felt that perhaps I had been tactless, and shouldn’t have asked her to re-live that morning. I said something to that effect – it was hard to know what to say. But she replied, ‘That’s all right – I agreed to speak to you, so I will.’

‘Next, the police arrived. The paramedics told them what they had done, and packed up. They covered my mother with a spare duvet cover on the floor while the police took a statement. Then they wanted another one from me, which they wrote down. After that, they did a full body examination of my mother. This has to be done in the event of an unexpected death, they told me, in case of foul play or homicide.

‘The policewoman phoned the undertakers, and they arrived. They asked if we wanted to say goodbye to our mother before they took the body away. We did, of course we did, but, you know, it’s not so easy when there are two police officers in the room, and pagers bleeping and voices talking, and undertakers wanting to get on with their job. So we didn’t really get to say goodbye to her. The undertaker took her, and we never saw her again.

‘She had to go for post-mortem, because it was an unexpected death. Even though Mum had a known heart condition, and had had a previous severe heart attack, a postmortem had to be done because she had not seen a doctor for about six months.’ Apparently, if you have not seen a doctor for a fortnight before death, the law is that a post mortem must be carried out to discover the cause of death. In fact, it is very rare for any sudden death at home not to be referred to the coroner for postmortem examination.

‘We were asked if we wanted to see her after the postmortem when she was back in the undertaker’s parlour. But I didn’t want to. I knew all the time I would be looking for the incision marks of what they had done to her. I saw the postmortem report – every part of her had been opened up and examined. I didn’t want to see what they had done.

‘The coroner reported the findings on autopsy:

1. Ischaemic heart disease

2. Old myocardial infarction

3. Acute myocardial ischaemia.

‘The coroner said that establishing the exact time of death was always difficult, but it could reasonably be stated that death had occurred before 9 a.m. – that was one and a half hours before I found her, and before resuscitation was started.’

We talked a little about the sadness of it all, and Kelly said:

‘I think she had a peaceful death – there was no sign of a struggle, or anything like that, and her face looked comfortable and happy, not anguished, as though she had been in pain or distress. By the time all that resuscitation was started she wouldn’t have known, or felt the pain of those electric shocks, the tube being pushed down her throat, or the injections. In spite of what they called “an atrial response” I don’t think she would have known anything about it, and felt no pain or shock.’

Then Kelly told me something that interested me greatly. She said:

‘I was talking about this with an acquaintance, and she told me that her mother had died one Christmas lunchtime, and that the family called no one. The men of the family simply carried her to her room, and laid her on her bed. They did nothing, because four years previously she had suffered a heart attack and had been successfully resuscitated. After that, she was so brain-damaged that she had to be looked after constantly. The family didn’t want it to happen a second time.’

I don’t call it ‘doing nothing’. I call it respecting the dead in an appropriate and humane way, and enabling the family to say goodbye to their mother.

I am grateful to Beatrice and her sister Kelly for their kindness in giving me this information, knowing that it was for publication. My sympathies go to them both for the troubled memories they retain. But I am sure that Kelly was right when she said that her mother died peacefully – she died quietly in her own home, in her own armchair, which is what we all hope for. It was what happened afterwards – events for which they were not responsible – that was grossly disturbing.

Beatrice’s words to me, when she told me what had happened, stick in my mind. She’d said, ‘The trouble was, we’d never discussed it. We didn’t ask her what we should do if she had another attack.

We should have done, because we knew she had a weak heart, and it could happen any time. But we didn’t. I think everyone should talk about these things.’

Beatrice is right – everyone should discuss these matters, and make their wishes known. But accurate knowledge of the reality of events is in short supply. Most people get their information from the media, especially television hospital dramas, which portray a fantasy world in which resuscitation is usually successful and has no side-effects. There is a lot of debate amongst medical ethics committees, which is valuable, but their efforts are hampered unless the general public knows what the real issues are. Everyone should have proper information about what resuscitation involves; what the initial success rate, the long-term success rate, and the possible side effects are.

Cardio-Pulmonary Resuscitation may be more carefully monitored and restrained in hospitals today, but the incidents in the community are increasing. For example, in 2010 St John’s Ambulance started a national fund-raising campaign to raise money to purchase thousands of Automatic External Defibrillation (AED) machines. This is just one of the many initiatives in the community.

Anyone involved in healthcare, however loosely – police, ambulance crews, clinicians, social workers, Red Cross volunteers, care assistants, first aid workers – all are shown how to use the AED machine, and the rule is that an attempt to resuscitate must be made unless there is a clear and unequivocal order not to do so. This is the DNAR order (Do Not Attempt Resuscitation) commonly used in hospitals. However, in the wider community such an order is not generally available, even if it has at some time been made. A person may have a living will, but if they collapse at the shops, who is going to know?

In country areas, where a hospital may be some distance away, lay people are trained and given the equipment to resuscitate, so that they can be immediately available. These people are volunteers, called Community First Responders, and they are linked to the ambulance service. I think Kelly and Beatrice’s mother must have been treated by such people at first, because two men arrived within a few minutes of Kelly’s phone call, whereas it took about thirty minutes for an ambulance to get to the house, which is in the countryside.

Since the turn of the millennium, portable defibrillators have been developed and are being used in the community. They are monitored electronically, and require no training. You simply open the lid and all the instructions are clearly printed: lay the collapsed person flat on their back, expose the chest, attach the pads to the points indicated, and switch on. The machine will pick up the extent to which the heart is fibrillating. At a signal from the machine, everyone around must stand back, and a shot of electricity is directed into the heart, which will stop the heartbeat altogether, thus stopping the fibrillations. This can be repeated several times, and will usually allow the heart to restart a rhythmic beat, at least temporarily, until an ambulance arrives with trained paramedics who can administer more aggressive treatment.

These defibrillators are now available on the open market, and there is a great deal of interest and excitement about them. Supermarkets, shopping centres, sports arenas all have them. Before many years have passed, health and safety regulators will no doubt require every public place to have one. Our love affair with machinery ensures that, once it is available, it will be used – regardless of whether it is appropriate or not.

Old age is no protection, because this would be described as age discrimination, which is, of course, illegal. I can envisage an old lady, of eighty-five or more, collapsing in a church service. The churchwarden rushes to get the defibrillator. Should the vicar be the one to say, ‘Wait a minute. We all know this lady. Isn’t this what she has said she wants? She is old and ill and lonely. She has told many of us she wants to join her husband, who died ten years ago. She should be left to die in peace. Put away your machine, and in the presence of Death, let us pray.’

Pity the vicar who has the guts to say such a thing. It would split the parish down the middle. Half the old ladies would say he is a hero; the other half would call for a public unfrocking. Special meetings of the PCC would be needed; the police, magistrates, the local paper, the bishop – it might even reach the ears of Canterbury or Rome!

The Joint Royal Colleges Ambulance Liaison Committee (JRCALC) issues guidelines to their members on when not to start resuscitation. They are in cases of:

 

Decapitation

Massive head destruction

Massive injuries incompatible with life

Decomposition or putrefaction

Incineration – full thickness burns greater than 95% of body surface

Drowning – known submersion for longer than an hour

Rigor mortis

Livor mortis (post-mortem lividity)

The known existence of a DNAR order.

 

I suppose it is some small consolation to be told that if I have been decapitated, no one will try to resurrect me!

The ambulance team has an unenviable job. They do their best, but they get a lot of blame from the general public, which is demoralising. In a situation such as the one just described, with Kelly and Beatrice so clearly upset, it must have been profoundly distressing for them. But, legally, no relative can say what medical treatment should or should not be given to another person.

Success for the ambulance team is defined as ‘admission to hospital alive’, and they are duty bound to strive for as long as necessary – up to one hour – to achieve this objective. They are empowered to declare ‘life extinct’, but as long as there is the smallest electrical response it can be argued that life is not extinct, and they must continue. Even if the ambulance crew get the patient to hospital alive, the side-effects can be severe, especially if the brain has been starved of oxygen. Some people in long-stay geriatric wards and care homes are there because of brain damage following a successful resuscitation (see also Appendix I).

Louise Massen is Clinical Team Leader for the South East Coast Ambulance Service, working in Gravesend, Kent. She was invited to speak at the National Council for Palliative Care annual conference in March 2009. She called her lecture ‘Dying Differently’. The following is taken from her lecture notes, with her permission:

 

Ambulance clinicians from all services work within the Ambulance Service JRCALC Guidelines 2006 (Joint Royal Colleges Ambulance Liaison Committee).

Ambulance clinicians’ role traditionally has been to:

Preserve life

Prevent deterioration

Promote recovery.

The role of the modern ambulance service is far more than this. Ambulance clinicians have specialist skills in primary and critical care, and, increasingly, take healthcare to the patient – especially out of hours.

The only way that very ill patients are able to get to hospital will be when someone asks for an ambulance to attend.

The Ambulance Service offers a 24-hour service, seven days a week, following the JRCALC Guidelines 2006.

 

– the guidelines are specific that in the event of being called to a cardiac arrest or near-life-threatening event the ambulance crew is obliged to initiate resuscitation – unless

A formal Do Not Attempt Resuscitation (DNAR) order is in place, in writing, and given to the crew.

The DNAR order must be seen and corroborated by the crew on arrival. If the ambulance crew is not satisfied that the patient has made a prior and specific request to refuse treatment, they must continue all critical care in the usual way.

The condition of the patient must relate to the condition for which the DNAR order is written. Resuscitation should not be withheld for coincidental reasons.

Resuscitation may be withheld if a known terminally ill patient is being transferred to a palliative care facility. This can only be valid if Ambulance Control has been given prior and specific information, which has been recorded against the patient’s name and address, and the ambulance crew has been informed.

 

Louise called the second part of her lecture ‘The Moral Dilemma’. What happens when an ambulance crew arrives at the house of a patient who has suddenly ‘collapsed’ and Ambulance Control has received no other information? What will the crew do? Imagine the scene:

 

The ambulance crew will come running into the house laden with response bag, AED (automatic external defibrillator), an airway bag and drug kit.

The crew will take the stairs two at a time and rush over to the patient who has collapsed in bed.

They will perform a quick primary survey to establish vital signs. If there is no Airway obstruction, Breathing, or Cardiac output (known as ABC), the crew will commence resuscitation.

The crew will grab the patient by the arms and legs and lift them on to the floor, and using medical shears slice the nightclothes up the middle to expose the patient’s chest and throat.

Next, they will place defibrillator pads on the patient’s exposed chest and commence cardio-pulmonary resuscitation using JRCALC guidelines.

The crew will intubate the patient with an endotracheal tube, or in some circumstances, a laryngeal mask airway.

They will gain intravenous access, either using a jugular or peripheral vein; then administer intravenous drugs.

The crew will use the AED to deliver defibrillator shocks if necessary.

If resuscitation is successful, the crew will lift the patient on to a carry chair, downstairs and out to the ambulance, and race off to the A&E department of the nearest hospital.

When resuscitation is not successful, the crew will perform a Recognition of Life Extinct (ROLE), and contact the police, who must inform the coroner’s office.

The crew will fill out the Patient Clinical Records.

 

Louise continued her lecture by asking these questions:

Is this right or is it wrong?

Why does it happen?

What can we do to make sure it does not happen?

How can we help?

To which she gave some answers:

 

The Ambulance Service needs to be incorporated into the Integrated Care Approach for all end of life care patients.

By having the information recorded in the Ambulance Control Centres, the crew would be forewarned.

Having access to a written DNAR/Advance Directive/ Living Will immediately on arrival will prevent inappropriate clinical intervention being performed.

Paramedic practitioners and clinical care paramedics have a huge range of medical treatments available. These can include broad-spectrum antibiotics and many drugs for treating minor illnesses, the use of which is controlled by Patient Group Directives (PGDs). All ambulances carry oxygen.

 

Louise ended her lecture by saying that the ambulance crew is usually first on the scene of a collapse, and that there is still a widespread lack of understanding among the general public about the scope and practice of ambulance clinicians in end-of-life situations. She pointed out that the advanced medical pathways available often put ambulance clinicians in a difficult position, which can be a true moral dilemma for them.

Numerous letters and telephone calls between Louise and myself have impressed on me the truth of these last words. She has told me many sad stories of an old person, obviously at the point of death, or maybe even dead, whom they are obliged to resuscitate and transfer as fast as possible to the nearest A&E department, where more advanced techniques can be administered. She tells me that usually the relatives or friends will say, ‘Do all you can,’ and insist on transfer to the hospital; and although the crew know that such steps are often pointless and sometimes cruel, they must do it.

On the other hand, she told me of a man of forty whom she recently attended after he had suffered a cardiac arrest: the ambulance crew resuscitated him, and took him to hospital. He returned home within four days, and was back at work in a fortnight.

There really is no right or wrong here.

I asked Louise Massen to write a supplement on the training of ambulance crews and the scope of their work, which is reproduced as Appendix II, at the end of this book.

Currently, there is a great deal of anxiety and inter-disciplinary debate about whether or not resuscitation is appropriate in palliative care – this being defined as ‘the care of patients with a known terminal disease’. Opinions rage back and forth with extreme views expressed on both sides. A Joint Statement from the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing was issued in 2006. It is broadly based and helpful, but very technical. More succinct, and therefore more accessible, is an article published in the Nursing Times in April 2009 by Madeline Bass, Senior Nurse and Head of Education at St Nicholas Hospice, Bury St Edmunds, Suffolk. The article shows the insights and instincts that a thoughtful nurse can gain from many years’ experience of caring for patients at the end of their lives. This article is reproduced as Appendix III at the end of this book.

Resuscitation in nursing care homes is quite another matter. The people in them generally do not have what is termed ‘known terminal illness’. They are old and frail, but with the advent of the National Service Framework for Older People (DOH 2001), age discrimination is illegal. They may have a condition such as Alzheimer’s or a neuro-muscular disease, but these are chronic, and a known terminal time span cannot even loosely be ascribed. Some people in nursing care homes have a DNAR order, issued by a doctor. Some people sign living wills that include a DNAR order. For the majority of people, however, no advance decision has been made, in which case whether or not to resuscitate is entirely up to the staff of the care home, and whoever happens to be on duty at the time. There are very few trained, registered and experienced nurses working in nursing care homes these days. These homes are run by managers, who may have no clinical experience, and care assistants, who may have a very skimpy training in basic nursing. But they all know how to use an AED machine.

I have a friend, Sue Theobald, who does a great deal of voluntary work for the elderly and disabled, including running a music therapy group. She tells me that the group was in a small, specialist home that houses about six people with severe advanced Alzheimer’s disease. Whilst the group was there, a woman actually died. Within seconds, the staff had her wired up to an AED machine. Sue tells me the speed of their movements was incredible. The electricity was switched on and the woman’s heart jerked back into some sort of beat.

Why? The answer is nearly always fear. Fear of litigation haunts the medical world from top to bottom, from the most exalted professor of medicine to the humblest paramedic or care assistant. ‘Cover yourself,’ is the first rule of practice, ‘and if in doubt, resuscitate.’

Today resuscitation in the community is burgeoning, with a 5–8 per cent success rate. However, this figure includes young patients and success in the resuscitation of older people is not evaluated separately. The latter is predicted to be 0–2 per cent in the very short term, and even when resuscitation is successful brain damage may occur. Automatic External Defibrillators (AEDs) can now be obtained on the open market, anyone can use one, and this is causing great excitement. Soon every public place will be required to have an AED, and once they are available, they will be used. The force, violence and pain inflicted never seems to be considered.

I was talking on BBC Radio South on Sunday, 6 February 2011 – it was a phone-in. A lady who said she was sixty rang to say she had died fifteen years earlier and had been resuscitated. She told listeners she had experienced an exquisite sense of beauty and peace and then ‘suddenly there was pain. I could never tell you how dreadful it was, like a great wooden stake being rammed through my chest.’ That must have been the CPR – entirely justified on an otherwise healthy woman of forty-five, but not justified on a failing old body for whom there is no chance of return to a meaningful life.

Five per cent of the population die in an ambulance, but this statistic can be misleading. Ambulance paramedics are required to get a patient to hospital alive, so they use every means available to keep the heart going for the duration of the journey. Something must be done to protect the elderly who, like me, want to be able to die quietly without first being subjected to well meant, but intrusive attempts to resurrect us.

A Commission of Enquiry is needed. I have approached all members of parliament and many members of the House of Lords. I have approached DEMOS, the government think tank that acts as a secretariat for commissions concerning social and medical issues. In this age of electronic tags and instant access to personal data surely it should be possible to prevent inappropriate resuscitation attempts.

 

1980

TIME TO GO

 

The Appalachian Mountains in 1896, the year Harry Randolph Truman was born, was a wild, rough place and it was hard to scratch a living out of the rocky soil. In a land of rolling valleys of oak and sycamore, beech and birch, it was natural for generations of Trumans to be woodsmen or loggers, and in later years Harry used the skills learned as a boy to construct the lodge, log cabins, boats and boathouse for the visitors’ centre he built on the edge of Spirit Lake beneath the brooding presence of Mount St Helens, in Washington State, USA.

Truman possessed a daredevil streak and in 1917, lured into the war in Europe by dreams of adventure, he enlisted in the 100-Aero Squadron of the American Expeditionary Force. He learned to drive and to fly, and trained as an aero-mechanic and electrician – all skills that he would use in later life. Under a veil of secrecy the squadron was sent to Halifax, Nova Scotia, one of the Canadian ports shipping troops to France during the First World War. The boat on which he sailed was hit by a torpedo, and although many died, Truman was one of the survivors. His dreams of adventure were replaced by the cruel reality of war.

In France, he worked first as a mechanic and then as a combat pilot. In later years, at St Helens Lodge, he would tell of flying the French biplanes in an open cockpit, ‘a leather cap on my head, a silk scarf round my neck flapping in the wind’. Like many such tales, they improved with each telling.

But war changed Truman, as it did many young men. A friend said, ‘He became a kind of loner, I think. He never discussed the war, he wanted to forget it.’

Truman was demobilised in 1919 and he returned to a very different America. He worked as a mechanic for a Ford dealer, but although always polite and courteous, he kept to himself, and seldom confided in or even mixed with his fellow workers. He seldom revealed his deepest feelings to anyone. It was not until later that they learned that he had married a girl called Helen Hughes during this time and that they had had a daughter.

In 1921, Prohibition, forbidding the sale or consumption of alcohol in the United States, became law. Truman was deeply offended. He had fought for his country, and now that same country was telling him he couldn’t have a drink! He saw it as a crisis that must be opposed. Besides, the humdrum routine of being a car mechanic, for low pay, was proving irksome; bootlegging offered better prospects. In many ways it was the perfect match of man and occupation. He was adventurous, ambitious, and full of initiative. Taking risks, bending the law, was just a well-paid game for him. He became a rum and whisky runner, picking up supplies smuggled illegally into the port of San Francisco, and running it into Washington State. What his wife had to say about this is not recorded! But bootlegging started by small entrepreneurs like Truman soon came to be controlled by organised and ruthless gangsters. With inevitable disputes over territory and money, Truman escaped just a few steps ahead of a gang who were after him. ‘I got in trouble with some big guys. Things got hotter than Hell,’ he said later.

He had to leave rum running and tried several low-profile jobs in which he hoped not to be noticed, but the boys were after him and he could not hide. Eventually, he decided that the wilderness was the only place where they would not find him – and that is how he came to Spirit Lake, beneath Mount St Helens, where he remained for fifty-four years until the mountain blew up.

Spirit Lake was over three thousand feet above sea level, and the land belonged to the Northern Pacific Railroad Company. Truman rented fifty acres from them and the rights to boating and fishing. He built his first cabin on the shoreline in 1926, and life was hard, but he had always responded well to a challenge. Few people could live in such isolation, and, inevitably, his marriage suffered. There were no schools for thirty miles, so his daughter had to live with her grandparents. His wife could not stand the separation so she joined her daughter. Divorce followed.

But Truman stayed. Like everyone, he had to earn a living, and he guessed that the beauty of the area would be a draw to visitors. Slowly, he built a holiday centre – cabins for visitors, a boathouse and jetty – offering fishing, riding, and trekking. The dramatic landscape and the solitude drew people from when the snows melted in spring until the cold of autumn. Winters were snowbound, and then he was alone.

Truman was a tall, handsome man and his carefree spirit, combined with rugged independence, made him extremely attractive to women. He tried marriage again, but the loneliness of the winters, being snowed up for months on end with one man – however attractive – proved too much for the poor woman, and she, too, left him.

Somehow, through the 1920s and ’30s, Truman managed to continue his bootlegging, and he always kept a supply of illegal spirits for his tough, outdoor friends. He also constructed a still, and made good money from selling moonshine (a home brew, distilled into a spirit of rotgut potential). Truman was hardworking, hard-drinking and hard-swearing. ‘That ol’ sinner,’ said a friend after his death, ‘he was just a goddam, hell-bound ol’ sinner. Up there in Heaven he’ll smuggle whisky in one door and ice and shakers in the other, an’ carry on like he always did. Jeez, I really miss that ol’ son-of-a-bitch – sure miss him.’

In 1946 Truman married Eddie. She was the woman for him, and they loved each other deeply. Friends said that he worshipped her. Not only did she seem to enjoy the long, cold winters, she could handle his somewhat tempestuous nature, his hard drinking, and his autocratic ways.

When she died, thirty years later, he was devastated. The loss nearly destroyed him. He ceased caring for himself, or his lodge, or the visitors’ centre. A friend said, ‘If he hadn’t been so tough, it would have killed him right away. But the old bugger was tougher than a boiled owl.’

 

*

 

Truman would walk to his boathouse as dusk set in, the warm evening wind whispering in his face. Trees, hundreds of years old, surrounded the lodge. ‘Bear and cougar, deer and elk grazed in the underbrush, the dense carpet of fir needles silencing any footfall … He could see the wild orchids and shooting-star wildflowers growing between the low bush huckleberries, the beautiful maidenhair ferns and delicate violets, yellow, white and blue. Monkey flowers and kingcups bloomed on the banks of the lake.’[6] Quite often a fisherman would be whipping his line for a cast upstream from the dam. An otter would surface, see the fisherman and dive, splashing the water with its thick tail. As the sun dropped behind the hills, Spirit Lake, the place Truman knew so well, assumed an air of mystery. The light would change, and the snow-capped Mount St Helens would show a different mood before it was swallowed up by purple darkness. The distant snowfields would become incandescent, dimly reflecting a pinkish glow. Then the moon would rise, and the mountain, holding her secrets close, would look as if she belonged to another world.

But in winter the temperature would drop to well below zero for months on end, as snow followed snow and the ice on Spirit Lake froze to five feet deep. Animals and birds would move to warmer grounds, bears would hibernate, and many creatures would die. Storms would come one after another, and the snow would fall six, or eight, sometimes ten feet deep. After every fall, Truman had to climb on to the roof of his lodge to shovel it off, or the weight of snow would have made the roof cave in. The winter months were a constant battle to survive, and Truman turned his talents to trapping and poaching. He had bought in sacks of beans and rice and flour, bacon and salted beef; he had dried fruits and herbs, and stacked wood for the fire.

People who live close to nature have a different take on life from urban dwellers, who think they can control everything. These people recognise the rhythm of life and death in the changing shifts of the natural world. Truman’s years of reflection beside his lake, beneath the shadow of the mountain, had surely formulated his philosophy of life.

In March 1980, Truman was eighty-three years old, fit and strong, but nonetheless old and getting older. Eddie had been dead for five years and he was lonely. He had kept the place going because, if he hadn’t, he would not have survived the winter. He had no enthusiasm for the idea of summer visitors, but that was the business upon which he depended for an income.

On Friday, 20th March, at 3.45 p.m., the ground under his feet shook slightly. He was glad, and thought it was a sign that the spring weather had loosened an avalanche down the side of Mount St Helens.

But scientists at the University of Washington, twenty miles to the north, were not so blase. The seismographs showed an earth tremor measuring 4.1 on the Richter scale, and the location was close to Mount St Helens, which gave cause for real concern. Three days later the earth moved again, measuring 4.4 on the Richter scale, and the quakes were even closer to the mountain. Visitors were urged to stay away, and by the end of March the authorities were considering possible plans for an evacuation. The forest service closed all roads to the area above the timberline. Truman’s lodge was eight miles above the timberline.

On the last day of March, a state of emergency was declared. Rob Smith, an old friend who lived further down the slopes, was having a drink and a quiet conversation with Truman when ‘all of a sudden the whole building seemed like a little cardboard box, rocking backwards and forwards,’ he remembered. They went out on to the porch and saw Mount St Helens spit a plume of ash thousands of feet into the air. Quite soon afterwards, the Deputy Sheriff’s car came screaming up the approach road, his voice booming from the loudspeaker: ‘The mountain’s erupting. Everyone out.’ Rob quickly made ready to leave, but Truman was not prepared to go. Rob went out and returned with the Sheriff. The two men tried every tactic from threat to guile – ‘We’re standing on a dynamite keg with the fuse lit. If it goes up, we will die’ – but they couldn’t persuade the old man to go with them. They left, and Truman was alone.

Mount St Helens was much changed the following day. A crater had appeared on the summit, two hundred and fifty feet in diameter, surrounded by a dirty black ring of ash, disfiguring the purity of the snow. Large fissures, more than a mile long, were visible, and Truman must have been not just awestruck, but tremblingly afraid. Yet it must have been then that he formulated his unshakeable resolve: ‘If that mountain goes, I go with it.’ He was eighty-three years old, his beloved wife was dead, he was lonely and he frequently wondered what he had to live for now that she was gone. He had lived beside that mountain since he was a young, virile man of twenty-nine, and it was as much a part of him as his own hands and feet. His soul was in that mountain, and there was no life for him elsewhere. He would stay.

This resolve, spoken by a man in his right mind, started a bureaucratic and legal battle that was to rage for the next eight weeks. It also brought in the press, which exacerbated the sheriff’s headaches, and was the cause of many sleepless nights.

The West Coast of America is on a known geological fault line, and tremors and small eruptions are quite common. But a dormant volcano, threatening to erupt, was big news, and all the papers wanted a story. When word got round that an old man was living halfway up the mountain and refusing to leave, editors were ecstatic and ordered their reporters to get the ‘human story’.

A ‘no entry’ zone had been marked out by the authorities. Did the reporters take any notice? Of course not! They swarmed up the roads in droves, panting for a good story. When they met roadblocks, they proceeded on foot, cameramen and all, along the forest paths. If the sheriff’s forest rangers ordered them off, they stuck up two fingers and ignored them. Helicopters came in, and so many flew over the roadblocks that, at times, the highway in front of St Helen’s Lodge resembled an air force landing pad.

Truman turned out to be a journalist’s dream. He was old and gnarled, he was fast-talking, heavy drinking, and his language was too ripe to put into print. His views were extreme and his contempt for authority was equal to, or indeed exceeded, that of the average reporter. He also proved to be photogenic. At first he was wary of the press boys, and refused to have anything to do with them. But then he began to see the advantages of their attention. They were a lively bunch, mostly young, full of enthusiasm and daring. Their company was stimulating and entertaining, and Truman was lonely. They all had an amusing tale to tell about how they had got in, how they had fooled the sheriff’s men. The situation was heady for an old man who had spent much of the winter alone, and Truman reckoned he could afford to lavish his entire whisky supply on these men. They all drank a toast to the damnation of that goddam Sheriff and his goddam rules and regulations.

But Truman was not doing all this just to be kind or hospitable. He was a wily manipulator with a well-honed talent for getting what he wanted. For one thing, the reporters helped keep his mind off the situation – one big quake prompted him to say, ‘You know, I’m scared as hell about earthquakes. I just wish it would all stop’ – but, more importantly, he realised the press coverage would be of help to him.

Truman quickly became famous in the Western States, and when the New York Times ran a two-page article on him, complete with quotations and pictures, he became a national celebrity.

For the law-enforcement officials charged with keeping people out of the Red Zone, it was a nightmare. The pressure to interview Truman grew as the quakes and avalanches continued, and lightning bolts, some two miles long, flashed above the mountain. A second crater opened up on the summit and blue flames could be seen leaping into the air. But still the press boys continued to dodge the roadblocks.

Truman made his intentions absolutely clear – he was going to stay at the lodge, no matter what. ‘You wouldn’t pull me out with a mule team,’ he said. ‘That mountain’s part of Truman, and Truman’s part of that mountain,’ it was reported in one paper. To another, he said ‘I tell you; I’m no brave soul. Those goddam quakes scare the living Hell out of me. But hell, I’ve lived here fifty-four years. I might as well stay; I’m not leaving my home now. You know, the people down town, they don’t understand. They think I’m putting on a false front. Well, Jesus Christ, I’m going on eighty-four years old. When you’ve lived fifty-four years in one place and it’s the only home you’ve got, well, you don’t just walk off and leave it. Well, Christ no. People just don’t understand.’

Another paper reported these words: ‘If the mountain does something, I’d rather go right here with it. If I was out of here and lost my home, I wouldn’t last a week at my age, I’d just die, and die miserable too. I’d have nothing to live for at all, and I’d just double up and die. My old heart would stop – if I’ve got one, an’ a lot of people have said I ain’t got no heart.’

The press loved it, and the newspapers lapped it up, printing rows of dots when the language became too obscene. The public bought the papers and magazines in their millions. Truman was a star. The American people like to think of themselves as robustly independent, like the first settlers, and here was a grand old American backwoodsman, showing them all that the ‘spirit of America’ was alive and well.

Meanwhile, in the courts and committee rooms of Washington State, debate was raging about Truman’s status as the only person remaining inside the Red Zone. Was it lawful? Was he trespassing? Could the evacuation order be enforced? Should he be forcibly removed for his own safety?

The land still belonged to the Northern Pacific Railroad Company, so they enquired if the lease could be revoked in exceptional circumstances; the reply was so long in coming that it wasn’t worth waiting for. The Sheriff checked with local prosecutors about Truman’s legal rights. The lawyers conferred and came up with the conclusion that an independent court would have to decide, and that, in view of the publicity, it was doubtful they could find an impartial jury to hear the case. Therefore, they could not prosecute. Besides, there was no way of avoiding bad publicity, and the lawyer doubted if there was a law-enforcement official in the county who would arrest Truman, even if he was breaking the law.

But was he? He was in his own home, doing no harm to anyone, except perhaps himself. Some bright spark came up with the question, was he sane? If not, he could be certified and removed. But the idea of getting in a couple of psychiatrists to examine him, which would undoubtedly reach the ears of the press, leading to a stream of derisive articles, was too much for the poor Sheriff and the idea was abandoned.

The fact is, Truman was saner and a great deal more intelligent than anyone debating his case. He had always been a cute customer when he wanted something. He said once that ‘the press is more powerful than the law’. Had he foreseen what was likely to happen to him? It would have been no trouble for two hefty young forest rangers to manhandle an old-timer out of his home, into a car or a helicopter. But with the press reporting every move this would have caused a public outcry. Civil liberties, the rights of man, assault – all would have been evoked. Truman knew what he was doing all along. Not from altruism had he exhausted his stock of whisky and rotgut on the press boys. With public opinion on his side, he was safe.

‘Safe’ is an odd word to use if you live in the path of an erupting volcano, but his logic was impeccable. We all have to die, and, whatever the circumstances, it is better to die in your own home than in an unfamiliar place surrounded by strangers. He had said, ‘If I lost my home I wouldn’t last a week at my age. My old heart would stop.’ He was probably wrong, there. In modern America old hearts don’t just stop, and if they do, life will be forced back into them. For Truman, it would have been a nursing home, confined, confused, drugged and defeated. From that, he was ‘safe’.

Truman stayed, and on 18th May, 1980, at 8.45 a.m. Mount St Helens blew and he went with it. A blast of hundreds of millions of tons of rock, ash and magma hurtled into the air at a speed of 900 miles per hour and a temperature of 700 degrees Celsius, then poured down the mountainside. Spirit Lake and the surrounding woodland vanished for ever.

A memorial service was held for Truman a month later at the American Baptist Church in Longview, Washington State. The President of American Baptists took the service. In his commemorative speech he said these words: ‘No one lives his life amid the awesome beauty of Spirit Lake and Mount St Helens without a deep theism we could not readily define. Truman was a man of the seasons – he didn’t resist nature, he respected it – and he was a creature of the cycles nature brings. Wherever he is now, if he can see what is going on here today, he’s saying “don’t you dare cry for me! I did just what I wanted. Go have a good time.”’

I am indebted to Shirley Rosen’s book ‘Truman of St Helens’, published by Madrona Publishers, Seattle, Washington State, 1981, for the information for this chapter.

 

 

‘I’m not afraid of dying, not at all, because I know what it’s like. I’ve been there. It was after the birth of my third son, and I had a massive haemorrhage. An artery in or near the vagina had ruptured and fresh arterial blood was literally bursting out of me, like a fountain or a water jet. I felt myself sinking slowly, slowly downward, like a slow spiral. This must have been the blood and the oxygen leaving my body. I couldn’t have moved if I had tried. But I didn’t want to. I was in a tunnel, a big tunnel and I was walking along it towards a beautiful opening or door or something at the end. It was so beautiful, I could never describe it; not an earthly beauty but peace and quiet and beauty, and I wanted to get to it. I was very near. Another few steps and I would have got to it, which is what I wanted. But then I heard a sound and I felt movement; that must have been when they checked the blood flow and started pumping blood into me. And I looked behind me and saw three little children, and I knew I couldn’t go. So I turned around and went back. But, oh, it was so lovely and I so much wanted to get to that beautiful place.’

 

—Joanna Bruce, MBE

(Jo is my mother’s first and favourite granddaughter)

 

1986

ACUTE HEART FAILURE

 

To write about my own mother’s death is so painful that I wonder if I can do it at all. I have sat for hours at my desk with a pen and a blank page, and nothing comes but tears and regret. I have shut it out of my mind for twenty-five years, telling no one, unable to dwell on what happened, what might have happened, had I acted differently, what I could have done, should have done, what I did not do, did not know. For twenty-five years I have erased from my mind thoughts of the pain she must have suffered, her fear, her terror, and, worst of all, her anguish at being surrounded by strangers in the hour of her death, because I, her eldest daughter, was not there.

Who can write about their parents objectively? Not me, for sure. The relationship is too personal to be objective. I will say only that my mother loved life and everyone she met. She was full of fun and vitality. It was life-enhancing just to be with her. She was also exceedingly pretty.

In 1986 she was sixty-five and very popular. She had a host of friends, held constant luncheon, tea and dinner parties. She was a brilliant cook and a generous hostess. She swam regularly and enjoyed walking, gardening, and taking her grandchildren on outings. She enjoyed life, and appeared to be in excellent health.

She had arranged to meet some friends for a coffee morning, but did not turn up. They telephoned the house, but there was no reply, so one of them came to the house and knocked on the front door. No reply. The woman looked through the window and saw my mother lying unconscious on the sitting room floor. She immediately called the local hospital, an ambulance came, and my mother was rushed to Accident and Emergency and put straight into intensive care.

My sister and I were informed, and we both arrived as soon as we could. Our mother was attached to a defibrillator, an intravenous drip and other life-maintaining apparatus, with dials and monitors and flickering graphs and lights. The gentle hum of the machines was reassuring, in a way. My sister and I were both trained and qualified nurses, but no longer practising, and medicine had advanced so rapidly that neither of us had seen such hospital treatment, nor did we know what was going on. We were told that our mother had had an acute heart attack.

‘Acute’ is the word to understand, and acute heart failure is quite different from congestive heart failure, which is a slow and cumulative process of heart dysfunction, usually occurring in the elderly. Acute heart failure occurs in a second, with no warning, no history of ill health, and it often attacks relatively young people. There are many possible causes, but the most common is a sudden occlusion (obstruction) of one of the coronary arteries. It is usually, though not always, caused by blood clots, developing in an atheromatous section of a coronary artery. If a clot forms in one of the coronary arteries, the occluded area of heart muscle will die. This is known as an infarction. It is a major catastrophe. Whether the infarction is partial or total will depend on the size of the clot and the size of the artery occluded. Either way, the occurrence is commonly called a heart attack.

Our mother must have had a partial infarction, because she was found on the floor, unconscious, and no one knew how long she had been there. Add to that the time taken for ambulance transfer to the hospital, and several hours must have elapsed. When my sister and I arrived, she was breathing without the aid of a ventilator, but did not appear to be conscious. We stayed with her all night, dozing intermittently in the chairs that the staff had provided for us.

On the second morning she regained consciousness, glanced around her quite brightly, then looked at us in surprise. ‘What are you two doing here? What’s going on?’

We stayed with her all day. She was very weak, and obviously ill, but she talked rationally and could remember everything up until the moment she had collapsed. She seemed very interested in what must have happened, and in all the medical paraphernalia around her. She remembered her mother, who had suffered a heart attack about thirty-five years previously and died.

‘If all this medical treatment had been available for my dear mother, she wouldn’t have died. I was there with my Dad. The doctor came, and said there was nothing he could do. I am very grateful to the doctors and nurses here,’ she said.

The doctor told us that she was out of danger and that we could go home if we wanted to. As my sister had three children to look after, we agreed that she should go and that I would stay on at the hospital with our mother. I stayed with her all evening and dozed in the chair beside her during the night. The machines hummed and whirred, and nurses came at intervals to check a monitor and offer words of comfort and reassurance. It reminded me of my own years of night duty – the night-time holds a beauty and mystery that we do not know during the daylight hours – but I had to recognise that although I was an experienced nurse, the new machines were quite beyond me.

It was Midsummer Day. Dawn was breaking, and soon brilliant sunshine was streaming in through the hospital window. My mother stirred and looked around her. ‘It’s going to be a lovely day,’ she said.

A nurse came in and removed the drip from her arm. ‘You’ve had a good sleep,’ she said.

‘Yes, and I feel a lot better. A cup of tea would be nice,’ my mother replied. Then she turned to me and said, ‘Go and get yourself some breakfast, dear. I’m sure there must be a canteen open somewhere in the hospital. I’m all right. I feel much better.’

The nurse agreed. ‘We want to change your mother’s bed and give her some breakfast, and we will probably get her up as well. I daresay she will be transferred to the ward when the doctors have seen her.’

I made my way to the hospital canteen with a great sense of relief in my heart. She’s going to be all right, I thought. Modern medicine is wonderful. I remembered similar cases of acute heart failure that I had seen thirty years previously. when there was very little that we could do, and when many people died, or survived to be cardiac cripples.

Breakfast was excellent – cornflakes, bacon and eggs, toast and marmalade, coffee – and it increased my sense of well-being. I had intended to go straight back to my mother, but … but … All those fatal ‘buts’ in life; they are as bad as the ‘if onlys’. If only I had followed my first intention. If only I had resisted the call of a midsummer morning, the lure of the rising sun casting long shadows over the hospital garden, the sight of small clouds floating in a clear blue sky, the sound of birds singing. If only I had shut my eyes and ears to the beauties of nature. But I didn’t. I went for a walk in the morning light.

When I got back to the hospital, the door of the intensive care unit was locked. I could hear sounds from within but could not enter. I knocked on the door several times, my anxiety increasing. Eventually a nurse came out and said that an incident had occurred, and I could not be admitted.

‘What incident?’ I asked.

‘A cardiac incident. We are dealing with it.’

‘But I must come in,’ I said.

‘No, I’m sorry,’ was the firm reply.

‘But she is my mother. I must come in.’

‘No. You cannot be admitted. Go to the waiting room and you will be kept informed of progress.’

‘What are you doing? What’s happening?’

The nurse did not reply, but turned back, shutting the door firmly in my face.

I was trembling and crying. ‘Let me in, open the door. You can’t keep me out.’ That is what I intended to say, but it is more likely that I was inarticulate.

Someone led me to the waiting room and brought me a cup of tea.

I cannot remember my state of mind – confusion, panic, anger, self-reproach were all mixed up and churning around. Time passed. What were they doing? A ‘cardiac incident’? That could mean anything. When had it occurred? Why, oh why did I take that walk? I should never have done it. Never. I should have gone straight back after breakfast, and then I would have been there to protect her. I envisaged her, weak and helpless, wanting me, perhaps calling for me, and I wasn’t there. I had abandoned her.

I ran back to intensive care, and banged on the door, calling out, ‘Let me in, let me in,’ but a man came out and told me: ‘No’. I tried to push past him, but he completely blocked my path and held me back. An indistinct picture of white-coated figures, and masses of black machines and wires around a naked body on a bed, was all I saw before the man shut the door. A nurse led me back to the waiting room. She saw my distress and was very sweet. My mother had suffered a second heart attack, she told me, and the resuscitation team were doing all that they could to save her. ‘Don’t worry,’ she said softly, ‘your mother is in good hands. They know what they are doing.’

‘But why can’t I go in?’

‘It really would be best if you stay here.’

And so I did, as everyone has to. No one is permitted to see a full-scale hospital resuscitation taking place.

I sat in numb grief for two hours. Self-reproach amounting to self-flagellation haunted me. If I had not taken that damned walk I would have been with her, and protected her from the violence of resuscitation. But would I? Could I? You never know in life, and it is always easy to be wise after the event. Could I have sat there and watched my mother suffer a heart attack, the symptoms of which I was well acquainted with, and done nothing? Could I have calmly observed her sudden pain, my mother clutching her chest with both hands, gasping, throwing her head back, mouth wide open in a frantic attempt to draw air into her lungs, her colour changing rapidly to a pallor that betokens death? Could I have witnessed this and done nothing? Of course not! In any case, my mother was still wired to cardiac monitoring equipment after the first heart attack, and red lights would have been flashing, warning signals screaming way beyond the confines of the intensive care unit in which she was being treated. The resuscitation team would have arrived anyway, and would have taken over. I would have been told to go to the waiting room, which is where I sat for two long, dreadful hours.

Eventually, a doctor came and told me that my mother was dead. They had done all that they could, he told me gently, but she had not responded.

 

 

‘Since death (take my words literally) is the true goal of our lives, I have made myself so well acquainted during the last few years with this true and best friend of mankind that the idea of it no longer has any terrors for me, but rather much that is tranquil and comforting. And I thank God that he has granted me the good fortune to obtain the opportunity of regarding death as the key to our true happiness. I never lie down in my bed without considering that, young as I am, perhaps I may on the morrow be no more. Yet not one of those who know me could say that I am morose or melancholy, and for this I thank my Creator daily, and wish heartily that the same happiness may be given to my fellow men.’

 

— the young Mozart in a letter to his father

 

2004-06

A GOOD DEATH

 

There are many neuro-muscular degenerative disorders – motor neurone disease, Parkinson’s disease, multiple sclerosis, Huntingdon’s chorea, among many others. Each follows a similar, though slightly different, pattern. Basically, the nerve endings start to degenerate, and with it, muscular control starts to slip, and the condition is progressive over a number of years. Cognitive function is usually not involved, and there are many examples of a brilliant mind in the wreck of a body – Professor Stephen Hawking springs to mind. However, different areas of the brain can sometimes be affected. If the centres regulating speech are damaged, a misdiagnosis of dementia may be made, with tragic results for the patient. I can think of few conditions more heart-rending than to be trapped, unable to speak, in a degenerating body over which you have no control, yet retaining your full mental faculties, and hearing, on all sides, that you are demented. However, this is not always the fate of a person so afflicted.

Carole and John had been married for ten years. He was a widower of sixty-five and she was a divorcee of fifty when they met. He was the love of her life. Ten years later he started to do strange and unexpected things, and to say things that made no sense. They consulted a doctor, who diagnosed frontal-temporal degeneration with primary progressive aphasia – that is, language mix-up and then loss of speech. John could understand exactly what was being said, and he and Carole listened carefully. They were told that it was not Alzheimer’s, but a degenerative disease in which the nervous and muscular system would break down. The ability to make any decisions would go, together with the ability to read and write, but understanding would remain for a long time. They were told that there was no known cure, but that certain drugs could relieve the symptoms and that death could be expected in two to five years. John said, ‘At my age, seventy-five, I can expect death in the next two to five years anyway, so what’s the big deal?’ and they all laughed. Carole was advised to keep a regular domestic routine going, and they were both told to enjoy life as much as possible – stimulation was the thing, physical, mental, emotional, visual, anything that makes you feel good.

They had two years of intense living and loving. They counted each new day as a gift from God to be lived to the full, and every hour was filled with rich experience. He loved music and had been a choral singer all his life, so, with the conductor’s permission, he continued weekly rehearsals and could sing in tune, but he did not take part in concerts. They went to new places, saw new things, read new books (Carole reading aloud), met more frequently with their families and grandchildren – it was good for the grandchildren to see John and to know that, in spite of his mental and physical infirmities, he enjoyed life. They went on several holidays together – the Canaries, the Greek Islands, a cruise to the land of the midnight sun – and all of these trips John relished. He loved sitting in the sun.

As time went on, John developed amyotrophic lateral sclerosis, which is a slow creeping paralysis. He was now failing fast, and one by one his muscular controls went, including continence and the ability to chew and swallow. He was at home all this time. The Macmillan and local hospice nurses came daily, and John’s son and two daughters (one of whom was a nurse) visited regularly. With their support, Carole managed well, and they were deeply happy. He knew she was always there and, although John had lost the ability to express himself through words and sentences, he spoke with his eyes, which followed her everywhere. Almost until the end – or possibly right up to the end of his life – he retained understanding and responded to those around him. Human interaction is not dependent on speech, and I have even heard it said that language and speech make up only ten per cent of all human communication.

 

*

 

One day Carole told me an interesting story. They were both deeply religious people. Carole had found her faith during the trauma of the divorce from her first husband, John when he was eighteen and had been called up for military service during the Second World War. Apparently the sergeant called his unit together and said something like, ‘Right, you ’orrible men, tomorrow you go to France, and half of you may not come back. Those of you who feel you might be in need of some horizontal refreshment had better go and see the company doctor and have a talk about sex. Those of you who feel that death might be an uncomfortable experience had better go and have a talk with the padre. Company dismiss.’

John had a talk with the padre.

Both John and Carole were Lay Readers in the Church of England, which is how they had met in the first place. John had now reached the stage of his illness where he could not talk, or if he did try it was unintelligible gibberish. They had, throughout their marriage, said daily prayers together, and Carole continued the practice, although John could not join in. She told me that one morning – and she couldn’t say why – she suddenly chanted the Anglican Order for Morning Prayer, ‘O Lord, open thou our lips,’ on a G.

Immediately, in tune, and with clear enunciation, John responded:

And our mouth shall show forth thy praise.’

She caught her breath in astonishment, and continued:

‘O Lord, make speed to save us.’

He responded:

‘O Lord, make haste to help us.’

She continued the centuries-old chant until the conclusion:

‘Glory be to the Father, and to the Son, and to the Holy Ghost.’

He completed the ancient response:

As it was in the beginning, is now, and ever shall be: world without end. Amen.’

All this was accomplished with clear articulation, in a precise rhythm, and in tune.

And although John never spoke again, he sang the morning and evening responses every day until he neared the end.

Carole told the neurologist this story, and he said, ‘Well, of course. The back of his mind is still working, but the front’s gone wrong.’ After that, Carole and other members of the family always talked to John about things from the past, all the events of his life that they remembered, and although he could not speak it was clear that he understood. At a shaggy-dog story his brother had been telling at every family gathering for years, John laughed until tears ran down his face.

About two years after the onset of the disease, Carole took John on holiday, and on the return journey he started to choke. He had not eaten or drunk anything for several hours and he was choking on his own saliva.

Carole took him directly to hospital and his lungs were aspirated. She was told that his glottis had ceased to function. The glottis is the muscle that, by reflex action, covers the windpipe on the instant of swallowing so that food is directed into the stomach. If it does not work, any food or fluid or saliva will pass directly into the lungs. The patient will either choke, or die of starvation or dehydration, or a massive infection will set up in the lungs and overwhelm the body.

Carole stayed with her husband, expecting it to be the end. John’s lungs had been aspirated and he had been given morphine and was comfortable. Carole expected to sit with him until he died. However, the staff nurse came to him and started to insert a naso-gastric tube through which he could be fed artificially. Carole was watching. It is not easy to insert a naso-gastric tube, even under the most auspicious circumstances, with a patient who is conscious and fully co-operative. Usually, it is best to give the patient a boiled sweet and tell him to suck and swallow all the time so that the glottis is almost continuously covering the trachea. But John had no control over his body and therefore did not have the ability to suck.

The tube has to be inserted into the nose and pushed downwards towards the stomach. It is best if the head is arched backwards, which to some extent straightens out the passage. The tube will go through the nose and down fairly easily for about the first third of the passage, but if there is no glottal reflex, a mass of soft tissue will be encountered and the tube may very easily go down the trachea into the lungs. This is very distressing to the patient.

Carole watched the staff nurse try this, with no success. She withdrew the tube and Carole breathed a sigh of relief. But when the nurse attempted it a second time, Carole said, ‘This is not going to work, is it?’

‘We have to make three attempts to pass a naso-gastric tube before we can say it cannot be done.’

‘And what if I say “no”?’

‘I would say “Thank God”.’

‘That is what I do say, now. It is not going to work, and I am not going to see him put through any more. I will take him home to die.’

The nurse breathed a great sigh of relief, and for the first time Carole looked closely at her. She had been so concentrated on her husband that she had not noticed the nurse, but with the long shuddering sigh and the murmured, ‘Thank God for that’, Carole looked at her face. The woman looked distraught. Carole said softly, ‘What’s the matter?’

The nurse replied, ‘I have three other patients here and none of them can swallow, and I can’t get a tube down any of them. I’ve tried, and I have to try again, and then again a third time, and I have other patients to look after.’

Carole spoke to her about what she had said – three attempts? Why, and what did that mean? Apparently, if a patient cannot swallow, artificial feeding must be started. If three attempts are unsuccessful, then a tube will be inserted under anaesthetic, with scanning equipment, or a feed-peg could be introduced into the stomach through the abdominal wall.

Carole asked, ‘Do you mean that for all patients, whatever their condition, three attempts must be made? Is the rule inflexible?’

Apparently, it was.

I was aghast when I heard this. Surely no doctor would be fool enough to issue a blanket rule covering all patients. No experienced nurse would attempt a distressing procedure three times on a dying patient without discussing with the doctor the course of action, or inaction, most appropriate. Where did the rule come from? Carole did not know. One can only assume that the rule came from the hospital authorities, or perhaps even some government guideline issued by bureaucrats who are not trained in medicine or nursing. Apparently, the nurse told Carole, the rule had been issued in order to offset any accusations about not feeding – in other words, starving patients who could not swallow. This is defensive medicine again – a curse destroying good medical practice.

Carole took John home. It was a very difficult decision, because she knew that at home he would have no food or drink, and would die, whereas if he remained in hospital he could be fed artificially. But he was dying anyway, and had said that he did not want to die in hospital. They had discussed this over the two years they were given in which to contemplate his end. But still she hesitated. It was only with the help and support of John’s son and daughters that they jointly decided to take him home.

The Integrated Care Pathway (ICP) for the care of the dying patient at home is based on studies showing that more than half of all terminally ill patients express the wish to die at home. It started as a pilot scheme, set up by the Liverpool Hospitals, to facilitate rapid discharge from hospital and to make available multi-professional care at home. Families looking after the dying need help, and the pilot scheme proved such a success that it is now provided by all NHS trusts.

Carole signed all the necessary papers (of which there were many) and took John home. A team of medical, nursing and domiciliary help was provided by the hospital. Yet such is the lack of understanding in society that someone said to Carole:

‘Are you bringing him home to starve him to death?’

Carole was deeply shaken by this ignorant and cruel remark, but she collected herself sufficiently to reply: ‘No, I’m taking him home to allow him to go through the process of dying as comfortably and as gracefully as possible.’

John was discharged from hospital on 5th October, 2006, in the care of his family, the Macmillan nurses and the local GP. When they had received him home, the doctor asked the nurses what they wanted to prescribe. Then he turned to Carole and said, ‘They know far more about this than I do.’John could not swallow, and so drugs were given to suppress secretions so that he did not choke. The nurses showed Carole how to keep his mouth and throat moist with glycerine swabs, and many other details of palliative nursing.

Carole slept with him every night, which is the closest and sweetest communion two people can have. She said, ‘I lay beside him and held his hand. He was so relaxed, and I knew he was happy, and so I went to sleep.’

On the night of 15th October, John Lewis died. Carole told me, ‘I woke up at one o’clock, and I knew at once that something had happened. The engine had stopped. He looked the same, but he was not there. He was quite warm and peaceful, and I think he had just slipped away quietly whilst I slept, as though he didn’t want to disturb me. It was a beautiful experience. It was a beautiful death.’

She said nothing for quite a while, and then said ‘I had twelve perfect years with John, and in some ways the last two were the best of all. Now I can truly say “it is finished”.’

 

2007

THE LIFE FORCE

 

Leah had been my delightful neighbour for twenty-five years and I had always assumed that she was about ten years older than me. It was not until she broke her leg and went into hospital that I discovered she was thirty years older than me. Leah was a hundred and two.

Leah was a widow and lived alone in her flat, and she fell at about eleven o’clock at night. Somehow, God knows how, she managed to haul herself to the telephone and ring for an ambulance. Steve and Sandy, neighbours who held a key, were awakened by the noise of an ambulance team trying to get in to the building. Steve went with them into her flat and found Leah on the floor, covered in blood, with a trail leading across the carpet from where she had fallen. The break was a compound fracture of the tibia and fibula, about three inches above the ankle, and pieces of bone were sticking out of the flesh. Poor Steve, who is not used to that sort of thing, nearly collapsed, but he controlled himself and helped the men get Leah on to a stretcher. In hospital, the bones were realigned, the flesh wound sutured and the leg plastered from thigh to toe. No one expected her to live.

But Leah did live. When I first saw her in hospital, she was virtually immobile because of the weight of the plaster. She was uncomfortable, certainly, but not in pain. She had a corner bed by the window. This was in June 2007. She sighed wistfully. ‘I hope this is not the end. Life is so beautiful, so interesting, so exciting. I don’t want it to end.’ In the year that followed, that was the only time, as far as I know, that she mentioned the possibility of death.

I reflected that, if she had not managed to haul herself across the floor to the telephone, she would undoubtedly have died during the night. Numbness, caused by shock and blood loss, would have engulfed her, and she would have drifted away before the morning light. I wondered what suffering lay ahead for her, what she could have spared herself within a night of fading consciousness. She knew her age; had she not anticipated death? But that is not the way our instincts work. Self-preservation is the first of the primary instincts, so Leah had made a superhuman effort to reach the telephone and seek medical help.

Leah’s husband, Alex, had been the artistic director for scores of major films between 1930 and 1975. He had worked all over the world with directors such as David Lean, Alexander Korda, Roman Polanski and Alfred Hitchcock. Leah had frequently accompanied him on location, and met many of the great film personalities of the period.

She told me that her biggest headache had been keeping Alex tidy and presentable, because he never cared a scrap about his appearance, and only wanted to wear old and comfortable clothes. ‘I knitted him a cardigan once, and after that he wouldn’t wear a jacket. The only things he wanted were these cardigans. I must have knitted dozens of them. They looked quite smart for a few days, but I don’t know what he did to them, because after a fortnight they looked dreadful – all out of shape, buttons pulled off, holes in the elbows – I could never understand how he managed it. The worst part was the carbon and charcoal from the sketches and drawings. If he wanted to smear something, or blend shades, he wouldn’t use a cloth like anyone else would. No, not him – he would grab the bottom of his cardigan and rub the drawing with that. No wonder his clothes were in such a state!’

She told me that they were asked to meet a new director. ‘We were told it was just an informal meeting one evening, so Alex went directly from work. I arrived from home and got there first. I saw at once that it was just about the smartest, most sophisticated cocktail party that film people can put on. Everyone was dressed to the nines, trying to outshine everyone else, the way they do, you know. It was all very pleasant. But when Alex arrived I nearly died of embarrassment. You’ve never seen such a sight – he looked worse than usual. One side of his cardigan was hanging down to his knees, the other side was up around his waist and it was covered in carbon and charcoal. There was a hole in his trousers. I can’t imagine how he had managed to tear his trousers; they weren’t like that when he went out in the morning. But he didn’t seem to have the slightest idea of how he looked compared to all the other smart people. He went around greeting everyone, charming, affable, friendly. People always liked him. You couldn’t help liking him.’

She sighed, and a dreamy look came into her eyes.

‘I’ve been a widow for thirty-two years, but I would never marry again. I’ve had a couple of offers; but no, not after a man like Alex.’

Another time she said, ‘When your husband dies, life changes utterly – everything changes. No one wants to be bothered with a widow. Invitations stop. Friends melt away. It’s when you begin to know who your true friends are. I had to start all over again, with a new life and new friends.’

But Leah was not just the wife of a successful artistic director. She was a remarkable woman in her own right and had scores of friends. I was not the only one who enjoyed visiting her in hospital. She sat up in bed, or on a chair, knitting for anyone who wanted anything knitted – indeed, I have a jacket and my husband has two jumpers from this period! I looked around at the other old ladies in the ward and she seemed to be the youngest of them all. She was sitting upright, her back unsupported, her eyes bright, her skin clear, her hair nicely arranged – one would have thought she was a sprightly eighty-year-old. It was a joy to visit her, mainly because she was so interested in everything you were doing, and her memory was phenomenal. Most old people have short-term memory loss. Not Leah. She wanted to know the outcome of something I had told her during the last visit, of which she had remembered every detail. I told her I was going on a cycling holiday with my grandson, and when I next saw her, her first words were, ‘How did it go? Did you have fun? You were in the Cotswolds, weren’t you?’

Everything interested her, and she remembered things I had forgotten myself. And as for Scrabble! It was humiliating. I played many games with her and she beat me every time. In fact, she didn’t simply win; she wiped the floor with me. My husband played a couple of games with her, but then announced that he wouldn’t play any more because he didn’t like Scrabble. Men are not very good losers …

Leah was a Jew, and the rest of her family was in Israel. She was obviously much loved because her daughter, who was seventy-eight, with a husband of eighty, and her grandchildren, in their forties and fifties, came to England regularly with their children, or phoned her every day from Israel. She was not one of those tragic figures, of whom I have seen so many, who are left entirely alone in their old age. Her family was very good to her, right until the end.

Leah spent three or four weeks in the orthopaedic unit of the main hospital. This is much longer than most people stay, but she could not remain indefinitely because the bed was needed for emergencies and she was transferred to what one would call a long-term geriatric hospital. My heart grieved for her when I heard where she was going, because I knew the hospital, and it did not have a good reputation locally. That was, I think, because the buildings had formerly been the old workhouse infirmary, and they had a bleak and forbidding aspect – ‘Abandon hope all ye who enter here.’ I approached the place with trepidation.

As I found my way to the ward, my attitude changed. A pleasant young nurse directed me to Leah’s bed and several others smiled at me as I passed. Leah was just finishing her lunch. I saw that her head was bent over and her shoulders were shaking. I thought she was crying. With great concern I touched her shoulder and said, ‘Whatever is the matter, Leah?’ She looked up and at once I saw that she was not crying, but laughing!

‘I was just thinking about yesterday’s lunch. Pass me those tissues, will you dear, and I’ll tell you what happened.’

She blew her nose and wiped her eyes.

‘The ambulance came to bring me here. Well, I was in the back with a young man and we got talking. He was South African, so I told him that I had been there with my husband when he was working on the film Gold with Roger Moore and Susannah York. And would you believe it, it turned out that his father was a stunt man in Gold. Well, we had so much to talk about, swapping stories, and he was telling me about his family and how his father came to be in Gold, that we didn’t notice time passing. This hospital is only about a mile up the hill from the main one, but about half an hour had gone by. We had travelled fifteen or twenty miles, and neither of us noticed.’

She had to have a little cough and wiped her eyes again before continuing.

‘Well, we got to the hospital and they lifted me out and carried me up to the ward. A nurse showed them the bed that was ready for me, and they tucked me in. Another couple of nurses made a fuss of me, checking to see I was comfortable, and then the nice young South African boy said goodbye.

‘It was nearly lunchtime, so they brought me lunch, which I ate, then they cleared it away, and I was just settling down for a little doze when a young lady doctor came over with a bundle of notes in her hand. She said she wanted to examine me, and pulled the screens around the bed.

‘Well, she examined me all over, eyes and throat, and heart and lungs and I don’t know what, then she looked at my leg and said, “This is a very long plaster for a fracture in the foot.”

‘“No, it was the tibia and fibula, a compound fracture.”

‘“It says here, the fourth metatarsal.”

‘“Well that’s wrong, it was the tibia and fibula.”

‘“I’ve got X-rays here, Mrs Wilson, and—”

‘“But I’m not Mrs Wilson!”

And then it all came out. No one knew quite how it had happened, but the ambulance men had been given the wrong instructions. The hospital was expecting a patient, and a bed was ready, so I was put into it, no questions asked.’

She had to cough again, she was laughing so much.

‘So I had to be transferred again. I didn’t get here until yesterday evening. I’ve been wondering about Mrs Wilson and what sort of a day she had. Mine was highly entertaining.’

In all the weary months that followed, Leah’s sense of humour never deserted her, and her interest in life never flagged.

From the beginning, Leah had been on continuous urinary drainage, because it would have been impossible for her to use a bedpan regularly. A catheter into the bladder for weeks on end can cause friction and general discomfort, but she did not complain. I presumed that she was having diuretics to keep the kidneys functioning efficiently, and also some kind of anti-bacterial drug to avoid infection.

I do not know what happened to her bowels. From experience I can say that bowel movements can be one of the biggest problems for geriatric nurses to have to deal with. Constipation usually sets in, and faeces become impacted, leading to nausea, headaches, lethargy, confusion and other nasty conditions for the unfortunate patient. Enemas help, but Leah could not have been turned on her side to receive an enema. Aperients often add to the abdominal pain, or can sometimes cause uncontrollable defecation into the bed, causing a nightmare of shame and humiliation for a sensitive person. How the nurses and carers handle this is one of the greatest challenges of good practice; a bad experience can leave a scar, slow to heal, on the mind of the unfortunate patient.

Weeks passed, and the leg did not heal. I don’t know how Leah endured the boredom of those long summer months, trussed up in a massive plaster that was impossible to move. Sometimes she complained of aching and stiffness in other parts of the body, so I massaged her other leg and her back and shoulders, which she said helped. Thank God for those new air beds, I thought, which continuously shift pressure from one part to another. In my nursing days massive pressure sores would have developed.

About six weeks after admission, Leah complained of a slight cough, which she could not shift. The next time I saw her she looked dreadful. It was an embolism in the lungs, I was told. She was on high doses of antibiotics and continuous oxygen and an intravenous drip for fluids. She could scarcely open her eyes or move a hand. Her breathing was laboured, yet she had the courtesy to mouth the words: ‘I can’t talk. Forgive me.’ I sat quietly massaging her upper chest for about an hour. ‘This is it,’ I thought, ‘she won’t survive this one.’

From the beginning, when the fracture first occurred, she had been on cardio-vascular drugs and other drugs to maintain circulatory function, as well as diuretics to stimulate the kidneys. When the embolus lodged itself in the lungs, massive doses of clot-busters were added, and all the other drugs were modified or intensified. Daily blood samples were taken for analysis until, she said, she felt like a pincushion.

Leah was on the ‘not for resuscitation’ list, which meant that, if she actually died, no attempt at resuscitation should be made. In my days of nursing, an embolus on the lungs would almost invariably have been fatal for an old person, and I felt reassured to see that notice at the end of her bed. I was glad to see that she would be left to die in peace.

I was not the only one to expect her death from an embolus. Her granddaughter, who was a practising nurse in Israel, came over to England and stayed in Leah’s flat, spending most of each day at the hospital with her grandmother. But the antibiotics, the oxygen, the clot-busters and the drip, combined with the cardio-vascular drugs, did their work. Leah was tougher than anyone had imagined and confounded us all. Two or three weeks later she was as perky as ever, sitting up in bed knitting or sewing, doing the Times crossword puzzle, watching Countdown, Mastermind and University Challenge on TV, getting most of the answers right, and beating me at Scrabble.

At some point during the summer months she developed an infection of the lungs. ‘It’s an MRSA bug,’ I thought, ‘this will be the end.’ But it was not the dreaded MRSA. It was a treatable infection, and another course of antibiotics drove it away. Leah was back on form – on form for her visitors, that is. None of us knew what she really endured as the weeks dragged on into months.

A long-stay geriatric hospital is not a place where any of us would like to end up. Leah was in a smallish ward of fifteen beds that were not too close to each other, but close enough for there to be no privacy. Most of her neighbours were confused in one way or another. Yet Leah never complained, not to me, at any rate. She did not become morose, in-turned or whiny – least of all did she succumb to self-pity. Her thoughts were always focused on those around her. ‘Look at that poor old soul over there. She cries all the time, poor soul.’ Or, ‘That woman over there came in last night. Her son came with her, a man of about fifty. He stayed all night, but he went after breakfast, had to go to work. It was good of him to stay for so long, don’t you think?’

The ward was chronically understaffed, and the nurses and care assistants were under great pressure, but they were cheerful and tried to maintain a happy atmosphere. Leah liked them, and knew all about their boyfriends, their children and their holidays. She was obviously popular. The worst thing for her was the boredom – ‘There’s nothing to do. The day is punctuated only by meal times, nothing else.’ Leah continued with her crosswords and books and knitting, which she adored, and I often took her a new commission to be knitted for someone else. Another friend, Suzy, had seen the same need, and also presented her with things to be knitted, until Leah had to draw a line – ‘Nothing more till after Christmas. I can’t cope.’

Leah’s reading would have been impressive for a woman half her age, but for someone of one hundred and two it was formidable. Moreover, she read without the use of spectacles. I saw her reading in hospital a history of Afghanistan in the twentieth century, upon which she commented knowledgeably; a biography of Charlotte Bronte, with a second for comparison; she read novels, biography, social history, poetry and occasionally a newspaper, but never a magazine. ‘I can’t waste my time on those things,’ she said.

She made the best of things with heroic goodwill, but it was not easy. ‘Nights are the worst,’ she said to me once. ‘I hardly sleep. Nights are very long.’

I am sure they were. To be awake, uncomfortable, and scarcely able to move for hours on end must have been a torment. I asked her about getting a nurse to shift her position.

‘There aren’t any nurses overnight,’ she said. ‘Well, not what I would call a nurse. There are all these different women who come from an agency. You never see the same one twice, and they are so slow. I don’t know what they are supposed to do. They amble around, or sit chatting, but you can’t ask them to do anything, because they won’t.’

I thought of my own months of night duty as a student nurse, when we were constantly on the move in a ward of thirty beds.

‘But what about the night sister?’ I said. ‘You could ask her to get the nurses to move you.’

‘I haven’t seen a night sister since I’ve been here,’ she said simply.

The ward was hot and claustrophobic, but the summer wore itself away and autumn brought with it cooler weather, which was a relief. Many times X-rays had been taken, but, to Leah’s disappointment, each time they showed that the leg had not healed and the huge plaster could not be removed. She would have to stick it out.

In November, after five months of discomfort and immobility, it was finally taken off and a knee-to-ankle plaster was fitted. She was overjoyed, and when the nurses brought her a Zimmer frame, she practised walking with the zeal of a young athlete training for the Olympics. Finally, she went to a rehabilitation centre where, to her delight, she had a room of her own. There was a high staff/patient ratio there, and she had a lot of physiotherapy. At last, the short plaster was removed, and life skills were introduced, such as walking up and down stairs, taking a bath and shower, using the kitchen, cooking a meal. She was determined to succeed, and within a fortnight, after six weary months in hospital, Leah was ready to go home.

Leah was treated entirely by the National Health Service, and from my observation as a visitor, I would say that she received good treatment throughout. The ambulance emergency treatment on the night of the break was impeccable, and the fact that she survived was little short of a miracle, and due entirely to her hospital care. Having been trained in the old school of nursing, when discipline was rigid, I was a bit shaken by the free-and-easy attitude of the nurses, but I think that is just my age – everything has loosened up in the last fifty years, and no one today would put up with the sort of nonsense that manacled us young nurses. There was, undoubtedly, a relaxed and cheerful atmosphere generated by the nurses. They sat on beds, chatted and laughed with the patients – things we would never have dared to do. I had the uneasy feeling, though, that no one seemed to be in charge, and I discussed this with Leah.

Leah agreed. ‘I’ve been in several different wards, both here and in the main hospital, and I could never have told you who was in charge.’

The main hospital was superior in every way to the long-stay geriatric hospital. But this has always been the situation. There is no point in looking back sentimentally and moaning, ‘It was better in my day.’ because it was not. The drama and excitement of surgery, acute medicine, emergency care, have always been the aspects of medicine that have attracted staff, and the career structure of the professions reflects this. An ambitious young doctor or nurse will rarely go into geriatrics if he or she wants to get on in the profession.

On the whole, I would say that things are probably better today than they were half a century ago. Staff shortage is no less acute, but at least Leah was in a ward with only fifteen other patients, and there was a reasonable distance between each bed. In my day, wards contained between thirty and forty beds, with about two foot of space between them.

Leah spent about four months in the geriatric hospital. In general, she was treated with kindness, courtesy and professionalism. The weariness and boredom of her situation she coped with in her own way, through mental activity and engaging with staff, who seemed to go out of their way to keep her spirits up. Quite simply, they were good to her.

 

2008

HOMECOMING

 

Leah was discharged in December under the care of her GP, a district nurse and a home help. She occupied a beautiful ground floor flat in a large Victorian house that was divided into twelve. She was the oldest resident and everyone knew and liked her. Something akin to a reception committee was waiting in the hall to greet her when the ambulance brought her home. She was thrilled, and not a little touched, by all the attention.

However, she was basically alone, and had to manage. Indeed, it was what she wanted, as she was fiercely, almost aggressively, independent. Her grandson begged her to come and live with them in Israel, but she refused. It was pointed out that she could afford to pay a carer to live in for a while. ‘I should hate it,’ she replied. ‘I have to learn to manage by myself.’ And slowly and surely she did. Every step with the Zimmer frame was tortuous, every turn to get something from a cupboard or the fridge was frightening to watch, but she wouldn’t let anyone do it for her – ‘I’ve got to do it myself,’ she said. The neighbours, Suzy and Sandy, and her cousin, Carmela, did the shopping for her, and brought in cooked meals.

Predictably, the home help didn’t come up to scratch. ‘She just flicks a duster around the place, doesn’t do anything properly, but I suppose I will have to put up with her until.’ I can do it myself And once, ‘I was disgusted! I gave her my sheets to iron. I had washed them’ – and she had, God only knows how – ‘and she only had to iron them, and put them on the bed. When I went to bed that night, would you believe it, I found that she had only ironed the top and bottom of a folded sheet, and not opened it out to iron the middle. I have never been so disgusted in all my life! I had to get up at 11 o’clock, take the sheets off the bed and iron them myself. I will never give her sheets to iron again – never.’ The thought of Leah stripping a bed, manipulating an iron and ironing board whilst clinging to a Zimmer frame, then making the bed in the middle of the night, sent a shiver down my spine. But I kept very quiet on that one. I have never ironed a sheet, to my recollection. My attitude is – if you can’t give a thing a shake and put it on the bed it’s not worth keeping! But I could hardly say that, could I? I didn’t want to end up in her ‘disgusted’ book.

Her social life intensified. She couldn’t get out, so people came to her. She revived her former bridge parties, and played with ferocious zeal, I was told. Bridge is a very difficult game, requiring a quick mind and memory skills. I resigned myself to being wiped off the Scrabble board, although she had the kindness to tell me my game was improving. I found, to my surprise, that I was concentrating fiercely, working out all sorts of sly strategies to outmanoeuvre her, but I never did, she was too quick for me. Then I realised, not at all to my credit, that I was getting irritated, and was determined to beat her. But the craftier I became, the more did she, and she was always one step ahead. Incidentally, she also kept the score, adding it up in her head as we went along. I tried score keeping once and got into such a muddle that she took the task from me without a word.

Steve and Sandy were very good to her, coming in each day to see if she was all right and if she needed anything. They had a baby who was between a year and eighteen months old at that time, and they brought him in to visit her every evening when he’d been bathed and was in his pyjamas ready for bed. Some toys were kept in Leah’s flat so that he could play. The two seemed to love their time together, and I have seen that little boy in the hallway, crawling towards her flat and lifting his hands up towards the door. Even after she had gone, he continued to do this for several months.

In February, Leah had her 103 rd birthday. The whole family, including great-grandchildren, came over from Israel. The flat was so full of flowers you could hardly move.

Leah was determined to do more things for herself. She started by walking one hundred yards down the road and back, unaided. The next thing we knew she had been to Tesco, which was a quarter of a mile away. ‘I like to choose my own things. I don’t like people shopping for me – they always get it wrong,’ she said. In early March she said, ‘I’ve been up to the Town Hall today to get my bus pass. I will need it when the weather gets better.’

Then the ceiling fell in the bathroom. It sounded like an explosion. No one was hurt, but it broke the wash-hand basin into two pieces and cracked the lavatory pan. It would have been a shock to anyone, but Leah took it in her stride, and in the end my sympathies lay with the builders and the insurance men; the stick she gave them about repairs!

Her life force was incredible. She was absolutely determined to cope, and seemed to accept every difficulty as a challenge to be overcome – nothing was going to beat her. Nobody knew the mental and physical effort this cost her, no one saw the tears of frustration as muscular weakness took its toll, or the relief as she sank into bed at night. No one saw the effort it cost her to get up in the morning. She once said, ‘When I wake up, I can hardly move, my limbs feel so heavy and I ache all over. But I have to make the effort. Sometimes it takes me half an hour to get out of bed. Can you believe it? Half an hour just to get up!’ Then she would have a bath, which loosened her up, and, dressed, did her hair, creamed her face, and manoeuvred her Zimmer frame around several awkward corners to go to the kitchen for breakfast. It took her three hours. Many people twenty years younger would simply have stayed in bed and expected someone else to look after them. Not Leah – she would look after herself, thank you. Renewed pleas from her family to go to Israel were all rejected.

It must have been early June when Sandy from next door had cooked a meal for Leah and she said, ‘I don’t really feel like eating.’

‘Try it, dear, it’s nice.’

‘Yes, of course I will. It looks lovely. You’re very kind.’ But Leah couldn’t eat it.

Quite quickly after that, Leah suffered from nausea and vomiting, and became constipated. ‘If only I could open my bowels I would be all right,’ she said. ‘What I need is an enema and a good clear out.’

I was sitting beside her. She didn’t look herself. I asked her if she would like a game of Scrabble. ‘I don’t think I could concentrate,’ she said. She moved a little and winced. ‘I can’t seem to get comfortable. This pain jabs at me, here and here.’ She pointed to her stomach. I felt the area. It was a mass of hard lumps.

The district nurse came to give her an enema. I met her in the hallway as she was leaving.

‘I am going to get her doctor to come and see her as soon as possible,’ she said.

‘Are you thinking what I’m thinking?’

‘I don’t know what you are thinking.’

‘I think she has cancer of the stomach and abdominal organs.’

‘I am sure she has,’ replied the nurse.

The doctor came a couple of days later, and arranged for a hospital scan, which showed a massive cancerous growth in the abdomen.

Leah spent a few days in hospital at the time of the scan, then came home, then went back to hospital for more tests, then was sent home again. She was not eating, or at best she was taking only a tiny bit of food, and she lost weight rapidly. She began to look very ill. Her grandson came over from Israel and stayed with her for a week. He put pressure on her to go into a nursing home. ‘I will not return to Israel and leave you alone like this,’ he said, ‘and if I don’t go back I will probably lose my job.’

He searched widely, and found a home he thought she would like. She moved in.

I visited her there. It was a lovely day in June, and she was sitting in the garden in the sunshine – Leah always loved the sun. She seemed more relaxed, and therefore a little improved. This is often the way. The hospital or nursing home offers a feeling of security and freedom from the constant tension of struggling to cope with a battle one is going to lose. She was deeply engrossed in a crossword and saw my shadow on the grass before she saw me.

She looked up with a lovely smile. ‘You can’t stay beyond three o’clock,’ she announced. ‘It’s the finals of Countdown on television. I’ve been following it all through and must see these finalists.’ Her passion for word games and mental gymnastics was undiminished. She told me that she liked the new place, though she couldn’t eat the food, which she blamed on the cook, not on her digestive system. She felt she ought to stay there, because it was a worry to her family if she was alone at home, though she missed her home terribly.

I suggested again that she could have a live-in carer. Before the sentence was finished she butted in. ‘Never. I should hate having someone around me all the time.’ Most of us would think like that.

She told me that the previous day she had been taken to the anti-coagulant clinic at the hospital. Whilst I was with her, a carer came and said that the results had come through, and that she must have an increased dose of Warfarin. She handed Leah about six or eight tablets to swallow along with a glass of water. Leah sighed. ‘These pills! I’m sure it’s all these pills that are making me feel so sick.’ But she swallowed them nonetheless.

Suddenly she looked at her watch. ‘I’ve got to go. It’s time for Countdown.’ I tried to assist her indoors, but she resisted help, and in the end I gave up. I left her, paper and pencil in hand, eyes eager, sitting in front of the television, waiting for the first jumble of letters. On my way out I met another of her friends. ‘I’m just going to see Leah,’ she said brightly. I wondered what sort of dusty reception she would get!

I was bothered by the higher dose of Warfarin, and made a point of seeing the matron to discuss this before leaving. She was very guarded at first, as though I was accusing her or the nursing home of some impropriety.

‘It has nothing to do with me. We can only do as we are instructed. You will have to talk to the doctor.’

‘I’m not trying to cause trouble, honestly. I am merely puzzled.’ We swapped details on our training and experience. She was a woman in her fifties and was obviously dedicated to the care of the elderly. When I mentioned that I had been sister-in-charge of a cancer ward, she realised we were probably having similar thoughts.

‘If you look at her medical record you will see that since January the dosage has been going up after every visit to the Warfarin clinic,’ she said.

‘On what assessment?’

‘On the blood sample analysis.’

‘But she’s a hundred and three! What do they expect?’

‘I’m not sure that age comes into it.’

‘Apart from Warfarin, what other drugs does she have?’

‘Statins, cardio-vascular drugs and stimulants, anti-coagulants and diuretics, as well as regular analgesics.’

‘But that’s crazy. She has advanced cancer. It is better to die of heart failure than cancer.’

‘I know that. You know that. The doctors know it. But we cannot discontinue the drugs.’

‘Why? I don’t understand.’

‘At the moment she is alive, alert and enjoying life.’

I thought of Leah watching Countdown, beating the contestants at their own game.

‘You are right,’ I said thoughtfully, ‘she does enjoy life.’

‘If we stop the drugs someone might say that we were deliberately hastening her death.’

‘But is that likely? Would anyone say such a thing?’

‘It is quite possible.’

‘Have you discussed it with the relatives?’

Yes, and they said they will leave the decision to us.’

‘Have you discussed it with Leah?’

‘No.’

‘Does she know she has cancer?’

‘No.’

‘No? Why will no one talk about death? That’s at the root of the trouble.’

‘I know. But I have to safeguard the good name of the nursing home. I can’t discuss philosophical issues.’

At that moment a young man in a T-shirt and open-toed sandals breezed into the office.

‘Philosophy? Sounds a bit heavy! Is that how you spend your afternoons?’ He laughed good-naturedly.

‘We were talking about Leah, Doctor,’ said the matron.

‘Leah? She’s fine, going on nicely.’

Encouraged by his obvious good nature I said, ‘I was wondering why she is still on cardio-vascular drugs and diuretics.’

His smile vanished. ‘What’s the trouble? Have you any complaints?’ he said abruptly.

‘No, not at all. Quite the opposite, in fact.’

‘Are you a relative?’ he demanded.

‘No, a friend.’

‘I cannot discuss a patient with friends,’ he said curtly, and walked out.

I must have looked really put out, because Matron said, ‘You shouldn’t have said that. For all he knows you might be a journalist looking for a story about hospitals or care homes. The newspapers could probably do with something like that to boost circulation.’

‘I hadn’t thought of that,’ I said quietly.

The strength of the media, with their seemingly insatiable desire to criticise the National Health Service, came home to me.

‘I see what you mean. It would require more courage than the average doctor possesses to say “no more”. He would probably have to face an internal enquiry to justify his position.’

‘Exactly. And in the meantime, Leah is as well as can be expected.’

‘Yes, she is. In fact, she’s better than I expected, for which you are to be thanked.’

We shook hands and I left, but before leaving the building I poked my head around Leah’s door. She was deeply engrossed in Countdown, eagerly writing things down, crossing them out, looking up and thinking, then scribbling again with evident satisfaction. The friend who had arrived at three o’clock was nowhere to be seen. Presumably she had been sent packing by this doughty, irrepressible old lady.

 

*

 

Cycling encourages meditation. There is something about the gentle, rhythmic movement, the fresh air, the curve of the road, the passing hedgerows, that promotes thought. As I cycled home from the nursing home, I reflected that I had undoubtedly been in the wrong. Three times in the past twelve months I had thought that Leah would die, and in the back of my mind I had suspected that it would probably be the best thing for her. She would die quickly and peacefully, without suffering. When I had seen her in the hospital after the embolism I had really thought she would not survive the night. But she did survive – triumphantly. She had lived to enjoy six months at home, gaining strength, improving her walking ability, seeing her family and friends … in short, living life as fully as a lady of her age could expect. None of this would have been possible had it not been for modern medicine. The intervention of cancer was not really surprising. We all have potential cancer cells inside us, and a shock to the body, such as Leah’s broken leg, would be enough to trigger a growth. It is quite possible, as medicine advances, and death is pushed further and further into retreat, that many of us may die of some form of cancer. And yet … and yet … it nagged in my mind … isn’t it better to die of heart and circulatory failure, before you have to die of cancer? In the end, we are all in the hands of God, and nothing we do will alter our fate.

I had gained a good impression of the nursing home. The matron was the only trained nurse on the staff, but she set a good example and the assistants and carers whom I met all seemed pleasant men and women, who looked after the residents with cheerful goodwill. I saw a lot of smiling faces the day I was there. Leah’s room was spacious and airy, with two windows facing south and west, both overlooking the gardens, and she had a large bathroom leading off the main room. I felt she would be comfortable and happy there in the last weeks and months of her life.

However, an incident occurred that shattered the calm. Leah was barely digesting food, felt nauseous much of the time, and sometimes she was sick. Both constipation and diarrhoea plagued her. Most of these nasty emissions she could control, but not always. One night, shortly after I had seen her, she tried to get to the bathroom, but what with the struggle to get out of bed and manoeuvre her Zimmer frame, she could not quite make it, and vomited all over the bathroom floor.

Leah called for a member of the night staff, to whom she explained what had happened, apologised, and asked if the woman would clear it up. The woman looked at the mess, looked at Leah, said, ‘Clear it up yourself,’ and walked out.

Leah told me that she had struggled into the bathroom again, and managed, though she was fearful of falling, to detach the showerhead and spray water all over the vomit. Then she got hold of towels and spread them over the watery mess to soak it up. Finally, she returned to bed and got some sleep.

But that did it for Leah. In the morning she demanded to see the matron, told her what had happened, and said she was leaving that day. Poor matron was profuse in her apologies. She said that the woman came from an agency and would never be employed there again. But nothing would change Leah’s mind. ‘Because of that woman I am leaving this morning,’ she said. A taxi came, and by ten o’clock she had left the nursing home, although she was in no way fit to do so.

Matron was deeply ashamed and embarrassed. None of her staff were trained nurses, and ninety per cent of them came from agencies. Only ten per cent were employed full or part time because of the impossibility of getting rid of anyone who was unsatisfactory. If an agency care assistant did not work properly, the matron could say that she would not have the person back. The care assistants were always being shifted around, and some were trained, some not; some experienced, others not; some were very good, others poor or bad. It was always a lottery who was sent by the agency, and night duty was the hardest to cover satisfactorily.

Poor Leah arrived home, and no one was expecting her. She was seriously ill, and had to climb the front steps to the house, open the front door, which is heavy, cross the hallway, and open the door to her flat, which had been double-locked and is even heavier due to fire regulations. She was cold, and the heating had been switched off. She had to go to the cupboard and pull down the main switch, which is stiff. I just cannot imagine how she managed to do all this in her condition, but she did. Later that day a driver brought a case with her things in it, and left it in the hallway. That was the first clue that anyone in the house had of her return.

Steve went round to her flat and found her in a state of utter exhaustion, collapsed in her armchair. He telephoned the family in Israel to inform them. The doctor and community nurses had been informed by the matron, but visits could not be started straight away and Leah had to wait several days for a district nurse, carer, or home help. Sandy cooked meals for her, but she could not eat.

Once again, though, Leah perked up. Perhaps being at home, which is where she had always wanted to be, stimulated her. Added to this was the knowledge that she had to cope, because she adamantly refused to return to the nursing home, and there was no alternative. So each morning she got up, bathed, dressed, and received her friends, with whom she talked intelligently and with humour. She played with Steve and Sandy’s baby, did her crossword puzzles and word games, and generally spread around her a love of life that was infectious.

Yet all the time she was growing weaker and losing weight. The weight loss accentuated the growth in her abdomen, and now she looked as if she were seven or eight months pregnant. Her pain was increasing, and the prescribed analgesics no longer relieved it. One night it became so unbearable that she rang her GP, who arranged for hospital admission immediately.

I visited her in hospital towards the end of July. When I walked in, I thought she was unconscious, but no, she smiled and took my hand.

‘They’ve given me something to relieve the pain,’ she said. ‘It feels easier. I wish they would give me an enema. I feel I need a good clear out.’ Her faith in enemas was touching. Had she still not been told, or had she, perhaps, guessed the truth?

Apparently not, because her next remark was, ‘I’m wondering if I’ve got shingles. It can be very painful you know, my cousin had it.’

She drifted off into sleep again and I sat stroking her hand. Then someone came round with a drinks trolley, and she had a little water. A nurse emerged with the evening drugs, but she passed Leah’s bed. ‘I’ve told them I’m not having any more pills,’ Leah said, ‘nothing.’ There was a pause, then, ‘I’m sure it was the pills that made me so sick. But no more, I’ve told them. And I don’t feel as sick, now. I feel better without them.’

Did she know that it was the pills keeping her heart and circulation going that had sustained life in her through the months since the accident? She was a highly intelligent woman, and it seems unlikely that she did not know. Perhaps she had discussed it with her granddaughter, the Israeli trained nurse.

Yet I had never discussed it with her, or the present fact of progressive cancer, or the inevitability of death. Mutual friends told me that she had never mentioned death to them, either, which is surprising because most old people – well short of one hundred and three – will say things like ‘I’ll be glad when it’s all over,’ or ‘I’ve had a good life. I’m tired now, and want it to end.’ My grandfather talked of the Angel of Death; others speak of going to meet their loved ones. The only time Leah had mentioned death was fourteen months earlier, when she had looked out of the hospital window at the blue sky and said, so wistfully, ‘I hope this is not the end. Life is so beautiful, so exciting, so interesting. I don’t want it to end.’

Her passion for life had sustained and driven her through all the months of coping alone. Yet now I felt her life force was waning. She could struggle no more, and she knew it. Was that why she had announced she would have no more pills? Had she known all along that it was the pills that had kept her going and that rejecting them would mean the end? Was this Leah’s way of closing the door?

A nurse came up to the bed and gave her an injection.

‘Is that morphine?’ I whispered. Our eyes met.

‘Yes,’ she said briefly.

‘I’m glad,’ I said softly. The nursed smiled and moved away.

It was high summer – long bright evenings with no wind. But the sun sinks eventually, though it seems it never could, and when I left Leah that evening I felt her light was going out, and that I would not see her again.

Leah died on 8th August, 2008. Her family were with her.

Cancer can sometimes lead to a hard and difficult death. It was so for Leah, and her daughter and granddaughters told me of this. They couldn’t understand how her body managed to sustain life for so long. I think I can. Her love of life had been her strength and driving force. She had led a privileged life, with a happy childhood and a happy marriage – who could ask for more? She had also enjoyed good health until the age of a hundred and two when she broke her leg. Three times – the break itself, the embolism, the hospital infection – she had nearly died, and each time it would have been a relatively quick and easy death. But three times modern medicine had pulled her through and kept her alive until cancer intervened. I wondered how Leah would have reacted if she had been able to see ahead.

If the Angel of Death had shown Leah the manner in which she would die, I am quite sure she would, like most of us, have said, ‘Oh no – not that. Isn’t there an easier way? Anything would be preferable.’ But if the Angel of Life had stepped in at that moment, and shown her fourteen months of increasing difficulty, but also of friendship and family love, I am quite sure she would have said to Death, ‘If yours is the price I must pay, so be it,’ and she would have turned and taken Life by the hand.

 

EUTHANASIA

 

It is surprising how many people are quite unable to talk about death, yet are happy to talk about euthanasia, and they do so with the assured confidence of one who knows all the answers. Consider the following conversation I had with a neighbour in 2008. He started:

‘I’ve got to go and see my mother in the local care home.’

‘I didn’t know she was there.’

‘Yes. She fell and broke her pelvis last year. She’s eighty-six. She’ll never walk again.’

‘That’s very sad, at that age.’

‘It was dreadful in the summer. That hospital’s a disgrace, you know. It ought to be closed down. She developed MRSA. We nearly lost her.’ He sighed. ‘They managed to pull her through, but her mind was gone; she doesn’t know where she is or who we are.’

‘It would have been better if she had died of MRSA, then?’

‘Oh no. I’m a great believer in euthanasia.’

‘But what’s the difference?’

‘She was suffering. It shouldn’t be allowed. But if they gave her an injection, a little prick, she wouldn’t know anything about it.’

‘She’s probably suffering now, in the care home.’

‘Yes, and it shouldn’t be allowed. Euthanasia’s the answer. I’m a firm believer in it. You want to read up about it on the web.’

I wrote this conversation down verbatim immediately, so that I would not forget it. He was obviously shocked when I suggested that she could have died of MRSA, but then immediately said that she should be ‘euthanised’.

In May of this year, I asked my neighbour’s permission for this story to be published, and I asked him about his mother’s present condition.

He said: ‘She is in a dementia care home. It costs us £500 a week. She is doubly incontinent, she can’t really walk, she has no real mental understanding. Does she have any quality of life? No.’

I asked him, ‘Is your opinion about euthanasia the same?’

He was very clear in his reply. ‘Oh yes, definitely. And my father had the same belief.’

‘And would you still say that she should have died three years ago when she broke her hip, which was the beginning of the end?’

He was thoughtful for a very long time, and then said, ‘Yes. Euthanasia is the best, but as it’s not legally possible, I think she should have been allowed to die of the MRSA infection.’

Later in the conversation he repeated his opinion about the hospital being a disgrace because of MRSA. This attitude is heard all too often. When I was a young nurse, old people in hospital frequently developed pneumonia and died. In the 1950s massive doses of antibiotics started to be given to kill pneumococcal organisms and every other infection. But micro-organisms are the basic life form, and, when attacked, they adapt and mutate in order to survive. This is the Darwinian law of life. So these simple cells have developed a resistance to antibiotics, and no hospital can be blamed. There have always been infections in hospitals, and always will be. These ‘super-bugs’ are no more than a variant of ‘the old man’s friend’.

The remark that suffering shouldn’t be allowed is widely held, and many would agree with him. Yet suffering is a part of life, just as happiness is, and it is certainly not a justification for ending life. Suffering stalks the wards of all hospitals, but it is not senseless; if it was, all life would be senseless, and it is not. Indeed, suffering is a mystery that we cannot fathom, and never will be able to. The mystics embrace suffering, as one of the steps towards perfection.

I remember a lady whom I nursed when I was at the Elizabeth Garrett Anderson Hospital. I will never forget her, or what she said. She was a nun from a prestigious Roman Catholic teaching order, with schools in France, Belgium and England. She was a Latin and Greek scholar, and was deeply respected not only for her intellect but also for her teaching skills and her administrative abilities.

She was only forty years old, but her body was inflamed and distorted by rheumatoid arthritis. Her joints were virtually locked, like those of a wooden doll, and any movement was agony for her. We made matters worse by administering quite the wrong treatment. At the time it was thought that aspirin helped arthritis. Perhaps it did, sometimes, but this lady was allergic to aspirin, and she developed a duodenal ulcer. Nothing was known about allergies in those days, and it was thought that milk was the best treatment for a duodenal ulcer, so she was put on a milk diet, which meant about six pints of milk a day. This caused an irritable bowel and constant diarrhoea, but still we persisted with milk and aspirin, not knowing that both were causing the violent reaction. At no time of the day or night was this poor lady without pain. She could not move because of the arthritis, and her inflamed gut allowed her no rest. She could barely sleep. We had to turn her hourly, sometimes more frequently, to clear the frothy faecal fluid and blood that poured from her. Moving her was agony for the arthritic-locked joints, but she never complained, nor even let out a moan of pain – yet we could see the suffering in her eyes.

One day she said to me, ‘I used to think that I was doing God’s will in my religious vocation. I used to think that by teaching the girls, and instilling a love of classical learning, and the knowledge of Holy Scripture, that I was serving God. But now I know that I was wrong. God does not need my intellect, my learning, or my teaching. All that God requires of me is that I should lie here and suffer.’

This lady had entered the hell of physical suffering and, in its depth, found spiritual peace.

The prospect of state-sanctioned euthanasia sends a chill of despair down the spine of most medical people. Medicine is a vocation, not a job. It is a calling, comparatively rare, to care for and, if possible, to heal the sick. To promote death is contrary to the Hippocratic oath and inimical to the heart of medicine. If euthanasia became law, medicine, as we understand it, would come to an end.

The vast majority of people are simple, trusting souls who lead decent lives, go to work, raise their families, meet their friends, and, when they get sick, they go to their doctor in the hope that he or she will be able to make them better. If there was the smallest chink of suspicion, especially in the minds of the helpless or the chronically sick, that they could be ‘put down’, the trust would be destroyed. ‘Put down’ is emotive language, usually best avoided, but it is the language of ordinary people, it is the way most of us think and feel about these things.

I am a Christian; with every breath of my body, every beat of my heart, I trust and love God. Christian teaching guides my thoughts and my life. But when it comes to euthanasia, I flounder in a sea of uncertainty. It is horrifying, and contrary to the ten commandments, to think of killing the weak and helpless. Yet I also believe in evolution, and it may be that the necessity to decide the time of death for ourselves and others is part of God’s purpose for the evolutionary development of mankind towards responsible maturity, to which we will have to adapt mentally, spiritually and emotionally. Yet still it shivers me, and I don’t know the answer.

State-sanctioned euthanasia would open the floodgates for the entry of unimaginable wickedness. Not everyone is well motivated, not all families are loving, not all people wish their neighbours well. Doctors are not all wise and good, and it is quite possible to become addicted to killing, as the career of Dr Harold Shipman has shown us. The Devil is alive and well in the twenty-first century, and will no doubt exploit the opportunities for evil.

Yet a paradigm shift in the evolution of man has occurred in the last seventy years, which has altered birth, life and death, totally and irreversibly. Scientists can now confidently say that human life could be extended to two hundred or three hundred years, and some even say a thousand! Having seen, in my own lifetime, the miracles (that is not too strong a word) that medicine can achieve in saving and extending lives, I do not doubt that this will be possible. But given the difficulties this could imply -  questions of quality of life, overpopulation, human and natural resources - a cut-off point will have to come somewhere. If it does not come from natural death, or individual decision to die, it will have to be imposed. This is euthanasia.

The personal decision to die at the right time, and in the right way, is the ideal promoted by those who would legislate for voluntary euthanasia. But will it really end there? If medicated life can be extended, decade after decade, with no end in sight, surely someone will have to make the decision to end it?

To ‘turn off the machine’ is the expression most people use to mean ending life by turning off life-support equipment, such as a ventilator or a kidney machine. But, although the ethics are exhaustively debated, and a legal decision is required before it can be done, it involves relatively few people and occurs only in special circumstances. Yet the issue is more complex. As with everything in life, it is the little things that shape our destiny. Millions of people daily take drugs that keep death at arms’ length for a few more weeks, or months, or years. Should that switch be turned off? In other words should we, who are dependent on drugs, cease to take them and allow death to come? And if so, when? This does not require the decision of a judge or magistrate. It is a personal choice.

I have heard several ageing people, who enjoy robust good health thanks to cardio-vascular drugs and other life-maintainers, tell me quite cheerfully that when the time comes they will want to ‘take something to end it all’. When I point out that it would be far easier to stop taking life-maintaining drugs, or have the pacemaker disconnected, their smile vanishes. The muttered response is usually something like, ‘But I couldn’t do that’ and the person looks profoundly unhappy, and sometimes even shudders. The reaction is muddled thinking, certainly, but understandable. Which of us does not cling to life? When dying seems years away, we can be objective, even blasè, about it; but when it is to be next year, next month, next week - oh no! - and we reach for the pills that will prolong our time on earth.

Yet I am convinced that within a short time – a generation, perhaps, or two at the most – we will all have to take responsibility for our own deaths, and we will have to get used to it.

But what of those who cannot take the responsibility, or cannot articulate it? Most people would say that the doctors must decide. Under common law today, and perhaps more subtly, social pressure, doctors have to be very careful of withdrawing life-maintaining drugs. It is not strictly speaking euthanasia, but it is close.

The people who run Dignity in Dying (formerly the Voluntary Euthanasia Society) fear being kept alive unwillingly more than they fear death, which is understandable. However, to me at any rate, their mantra of dying with dignity is less easy to understand. Dying is a biological process, and there is no dignity to it, as anyone who is familiar with death will tell you. But the departure of the soul from the body is spiritual, which is altogether different. Even people who do not believe in God, or the human soul, will tell you that at the moment of death something mysterious, even awe-inspiring, occurs which they cannot explain or understand.

‘To die in peace’ is the biblical expression, which I prefer. To be allowed the space, the time, and the silence in which to know that I am going to die, to contemplate death and to come to terms with the inevitable, and above all to become friends with and welcome the Angel of Death, is what I pray for. All dignity will go as control of bodily functions goes, and I will become totally dependent on others, but if peace remains, that, for me, would be the perfect end.

Yet I am realist enough to know that such an idyll is unlikely. A hospitalised death amongst a crowd of other old ladies is what I can expect, and must accept. There will be no peace, and this, too, must be accepted. I anticipate rejection, because the old and ill are not a pretty sight, and few people want to enter these places. Few people want to draw close to death, so I must accept that I will probably die alone. It is widely assumed that the dying will be in pain, and the kindest thing is to drug them, so I accept that I may be drugged stupid, and my role will be simply to submit.

This is not an inspiring end, but it is already the norm, and few of us will escape it. We can cry aloud: ‘Do not go gentle into that good night … Rage, rage against the dying of the light.’[7] We can huff and puff about our dignity and our rights, but it will avail nothing. Death, the great leveller, makes fools of us all. The Grace of Humility, and her sister Acceptance, will be a better and surer guide on the hard and stony path that lies ahead.

But what have we to complain about? Practically everyone of my generation leads a life enhanced by, or even dependent upon, medicine. We have grabbed greedily the extra years and called them our ‘right’. So perhaps we should simply accept that a hospitalised death is the price that must be paid.

Euthanasia is not the same as suicide, which is no longer a criminal offence. On 9 July, 2009, Sir Edward and Lady Downes died in the Swiss clinic, Dignitas. Lady Downes was seventy-four, riddled with cancer, and had been told she had only a few weeks to live. Sir Edward was eighty-five. He was comparatively healthy, but his hearing and eyesight were going, and he was finding it increasingly difficult to cope with the infirmities of old age.

Sir Edward had been a very distinguished opera conductor. I knew his name fifty years ago when I was a young girl haunting Covent Garden Opera House, queuing for hours for a cheap ticket. Edward Downes was a repetiteur in those days, occasionally taking the baton when someone fell sick. Later, he earned international acclaim. I was stunned to read of his death, and of the way it had occurred.

This clinic, Dignitas, gives me the creeps. What sorts of people administer it? I shut my mind to such thoughts. But when it came to contemplating the death of Sir Edward, it seemed to me entirely logical. He had married the ballerina Joan Weston in 1955 and theirs was a true love match, lasting for fifty-four years. The thought of life without her must have been intolerable to him. Had her illness come ten years earlier, when he was still conducting, he might have seen things differently. But at eighty-five, with his life’s work over, due to failing sight and hearing, and beset with the usual problems of old age, and above all, the loss of his wife, he wanted to go with her.

In the olden days – as my grandchildren would say – a man like Sir Edward would probably not have survived for long after the death of his wife. Grief-laden, lost and disorientated, unable to cope, perhaps not eating, not taking care of himself, he would have wandered aimlessly around and ultimately ‘taken to his bed’, from which he would neither have had the strength nor the will to rise. No one would have been surprised. It would have been a welcome and merciful end to a long, happy, and fulfilled life.

But we are not living in the olden days. We are living in the twenty-first century, when it is not lawful for an old man to die of old age. A team of doctors and nurses and social workers would have been on to him, assessing and monitoring every function of his mind and body. Dozens of things would have been found to be ‘wrong’ with him, for which drugs could be prescribed. Had he attempted to refuse treatment, psychiatrists would have been called in to assess his mental capacity. It could have gone on for years. Sir Edward was having none of it. He wanted to go with his wife, and he chose to do so in the only way that he felt he could.

Less than a month after the deaths of Sir Edward and Lady Downes the Law Lords required the Director of Public Prosecutions (DPP) to clarify the law on assisted dying. Hitherto, to aid, abet or assist anyone to commit suicide had been a criminal offence with a maximum penalty of fourteen years in prison. However, no one in the UK has ever been prosecuted for doing so.

In February 2010 the DPP confirmed that someone who was ‘wholly motivated by compassion’ should not be charged with a crime. This is one of six factors for prosecutors to consider as they decide on the merits of each case. Assisting suicide is still a criminal offence, but the new guidance means that it may not be regarded as being in the public interest to prosecute.

We are on the cusp of a seismic legal change concerning the condition of human life at its close. Events are moving so fast that, at the time of publication, this section of my writing may already be out of date.

A Commission on Assisted Dying was set up in 2010 and is expected to continue until the end of 2011. After that it may well be that new legislation comes into place.

 

2010

HELGA

 

Is there anything more enduring than an old friendship? Beautiful, elegant … Helga will always be associated in my mind with Paris in the mid-1950s, where we both worked as au pairs. She was about twenty-eight, and I seven years younger. She was German, from Munich, where her father was an opera singer at the State Opera. The Nazi Party, the war, and the virtual destruction of Germany had overshadowed all her early life; she had known nothing else. Her mother had died, and, after the war, Helga and her sister were homeless - I never knew exactly why, because her father was still alive. She hinted that her father was a very difficult man, a musician and singer, wrapped up in his art, expecting and revelling in the adulation of his fans (mostly women), and quite incapable of looking after two teenage girls. The two sisters walked hundreds of miles to an aunt who lived in or near Hamburg. They ate whatever they could find, and slept where they could. She told me that the American soldiers stationed in Germany were always very good to them, and it was through contact with them that she learned to speak English, which she spoke all her life with a delightful touch of an American accent.

When the girls got to Hamburg, they found it to be in complete ruin. They had heard that the city had been badly damaged, but their imagination had not prepared them for the reality. Chaos reigned, and of the suburb in which their aunt’s home had been, nothing was left. Their aunt was presumed dead. How the sisters lived, I just do not know, because she said nothing of the years between 1946 and ’56. At some stage she must have learned shorthand and typing, and worked as an English/German secretary, and then decided to come to Paris to learn French and become a trilingual secretary, which was better paid. This was where we met.

Helga was so beautiful, that particular type of German beauty, rather like that of Marlene Dietrich, with lovely blond hair, finely chiselled features, and a slightly superior look that irritated some people but intrigued others. She was tall and slender with such stunning looks she attracted many men. She had had very little formal education because of the war, but she was so intelligent, and so artistic, that it did not matter. She had received no musical education, but seemed to know all about music. She had no training in the fine arts, yet knowledge of painting and sculpture seemed to come naturally to her. She had had no guidance in the appreciation of architecture, but nothing missed her eye. She had something informed and insightful to say about everything and taught me, her younger friend, so much, not just about the arts in the abstract, but about the humanity behind the creation.

We lived in central Paris, I with the family I worked for, and she, independently, in a tiny attic room at the top of an apartment block that was always hot in summer and cold in winter. Could I ever forget it? The concierge who opened the door, grumbling at having been disturbed, the lift to the fourth floor, which looked as though it had been constructed in the days of Napoleon Bonaparte – perhaps it had! Then two or three flights of stairs, each one steeper and narrower than the last, to the ill-fitting door of Helga’s fortress where she slept, lived, studied and entertained her friends. Everything was always in perfect order, in a space about nine feet square. With a camper burner on a tiny cabinet, and one saucepan, she produced delicious meals and delicacies.

We both studied at L’Alliance Fmnçaise and met a lot of international language students, but in the evenings we went out with her artist friends, earnest, excitable young men trying to put the world to rights after the war. They brought their canvases to her, seeking her opinion and advice, which she always gave after a careful study of the painting. Obviously, they respected her opinions, because they came back with more. Although not much older than they were, she could always be relied upon to comfort and console and, though she had very little money, to provide food, paint, a canvas, a book or a record. Throughout her life she had a wonderful kindness, which drew people towards her.

Helga probably had short-term affairs with some of these artists; she was young and vibrant. I would never have enquired – it was entirely her business – but I doubt if she was ever wantonly promiscuous, she was just not the type. Admirers surrounded her all her life, but she never married.

The Paris days came to an end. I returned to England to do midwifery, and she returned to her homeland to work in Baden-Baden as a trilingual secretary and interpreter. She remained there for the rest of her life. It was there, when she was about thirty-five, that she met a man whom she truly loved. He was a German pilot named Hans, who had been severely wounded in the abdomen during the fighting. She nursed him for two years and gave him the love he needed. They could not marry, because he already had a wife who did not want the trouble of nursing a sick man. After his death, she said she cried for two years, and for thirty years she took flowers each Sunday to his grave. I was with her on one occasion (she was probably around seventy at the time) and I remember a very beautiful graveyard on a hillside, quiet in the sunshine, with vineyards spreading to the south. She said, ‘It makes me happy that he is here, in this beautiful place.’

Helga was getting on for fifty when she and Eugen met. He was only thirty, so there was a big age gap. They were lovers, but she would not marry him. ‘I do not want him to be burdened with an old woman,’ she said. They did not even live together. ‘I do not want him to become too dependent on me. He is too young. It would not be fair. He must be absolutely free.’ I met Eugen several times and although, sadly, we did not share the same language, I could see that he adored Helga, and was a constant support and companion to her. Throughout her long life, Helga retained that feminine beauty and fascination that is more than sex appeal.

Helga was around seventy when she developed cancer of the breast. A mastectomy and chemotherapy were effective, but she was very much weaker and during the next ten years suffered many falls, both in the street and in her home. She told me about these, saying, ‘I am afraid to go out in case I fall again. I have no confidence.’ I last saw her in 2005 in Baden-Baden, and she fell and broke her shoulder. She was in great pain, but her concern was for my husband and me, that she had spoiled our holiday! I remarked with wonder at her stoicism; she smiled. ‘That is my way; I do not want to burden others with my pain. I just put up with it.’

A break of the shoulder can be very serious, because healing of such a complex joint is difficult. It is also very painful. She told me that, after this accident, Eugen left his own apartment and stayed with her, day and night, looking after her. The shoulder took seven months to heal, and she told me that the experience really deepened the love between them. She also said that she hoped that Eugen would find a younger woman with whom he could share a more meaningful life than ‘looking after a broken old woman like me’.

Helga had read my books, and one day asked me on the telephone if I was writing anything new. I told her I was writing about death. She chuckled. ‘Ah yes, death, we think more about it as we grow older, don’t we?’ Then she told me she hoped for death all the time, because life had become so burdensome.

A little while later I received a letter dated 14th March, 2009, which contained the following sentences:

 

Two years ago I tried to contact death-help organisations in Holland and Switzerland. But of course, I am uncertain if I will choose this way because of Eugen. I do not want to shock him.

The letter speaks of other things, then goes on:

 

My last remaining energy is now searching for the way for eternal release. In my opinion it is inhuman to extend lives in hospital that are not serviceable any more. I hope you understand me, in spite of religious doubts. Did I tell you about my black-out in my bathroom at the beginning of December, when I lay almost six hours helpless on the cold marble floor? The next day Eugen found me and drove me to hospital. They started to X-ray me all over and, surprisingly, nothing was broken, in spite of my osteoporosis, but they discovered metastases in my body (I had had two cancer operations in earlier years). I told them that I would not agree to any more operations, and therefore do not care for more details. The chief doctor touched me on both shoulders, and then said kindly, ‘According to your wish you are herewith released from hospital.’

A friend in Baden-Baden now explained to me the way to get into contact with the Swiss organisation, where she is already admitted in her wish to die. It seems very complicated, but makeable.

A funny point: she has postponed two times her final ‘ceremony’ which she payed for beforehand and now moves into a first-class clinic in Baden-Baden. Who knows if Helga will not end up with a similar solution? I don’t think so, but I find the story quite amusing.

I wrote to her, but do not have a copy of my letter. A reply came on 18th June:

 

My dear Jennifer

I can hardly believe that your letter dates from May 11th, but time seems to pass more and more quickly to a very tired old woman. Probably because she needs so much time for each daily task or good intentions (telephoning old friends etc.) So I spent several hours on the outline of this letter, my English having diminished like my mind!

Many many thanks for your letter, so beautifully handwritten. It has touched me because of your understanding reaction upon my intentions, And of course I was especially impressed by your announcement that you are preparing a new book with respect to peaceful and human release. In fact there are too many artificial prolongations, which I observed not only during my own stays in hospitals but also during long lasting cares of old friends. Not to forget my fiance, who suffered a lot due to the consequences of his war-injuries (belly shoots). We had just installed our small appartment in Baden-Baden, when he started to spend most of the time in hospitals. During the last weeks of his life I remained every night with him in a Karlsruhe-hospital, taking an early train to my office in Baden-Baden. During these nights I observed how much he suffered. One morning I decided not to drive to my office but wait for the doctor in chief. I prayed to release him and glanced into understanding eyes - he became [gave] an injection I suppose of morphium. I stayed next to him all day long. At about noon-time my dear Hans took my hands reposed on his pillow and kissed them. ‘Es ist alles so schon mit dir’ (everything is so good with you) were his last words. Then he fell asleep, still breathing for several hours, before his final release.

Where are such physicians nowadays? In earlier times, where many people died at home, the ‘house-doctor’ released his patients from more suffering in due time.

Right you are, dear Jennifer, at the moment my ‘Suisse-endeavour’ seems unachievable. This organisation is confronted with different sorts of troubles parts of the due to plotting actions. So I have to look out for another way of release, at least what my house-wife obligations are concerned, also to release Eugen, who is still sacrificing so much time and money for me. He is 18 years jounger than me and must prepare his new life with his new girl-friend, 20 years jounger than I am. This is the better solution for his future. I have the impression that they will become an ideal couple, as soon as she achieves her pension-time in summer of next year. So I have started to visit old-people’s homes in Baden-B., but the achievable ones are still too expensive for me, and once again Eugen offered his financial help. But then I wood soon end up in hospitals again, because of the condition of my body. Recently they have discovered new metastasis, but after two cancer-operations I certainly would not agree to support a third one in my age of 82. Eugen repeats toujour that I should stay in his appartment, and that he would always take care of me as much as possible in his new situatian of life. But I realise more and more that my mind is in permanent reduction as far as the sense of registration is concerned, I am still quite good in reaction and even in organising the necessities of household etc. But I am more and more troubled by my permanent trouble: Whom did I meet or talk to on the telephone to-day or yesterday what did we talk about, what did I see on the TV last night? I never swith arround, as many of my friends do. I choose beforehand out of the programm and then listen to these broadcasts with interest. But nevertheless!

The biggest trouble became my frightful emotions when I am allone. I remember now that it was the same with my father when he had about my age. My much jounger stepmother took attentively care of him, in spite of a younger friend and lover. When she married our father she was not so thoughtful and patient. She did not support any longer the step-daughters, only 6 and 8 years younger than herself. My sister and I left the house and so began the adventure of our life and professional possibilities.

Sorry for the length of my biography. To my excuse: The title of your book inspired me, and also your remark ‘Life is sweet – and death always fearful’. I cannot agree to this formulation. On my opinion life in age becomes more and more fearful and painful, and death is – at least for me – a hopeful aspect. One could endlessly discuss about different opinions, but you, my dear old friend, have the courage to resume them in book-form. Congratulations to your human engagement!

Finally many many thanks for the new CD’s of your last book-success. I have not yet found the calme hours to listen to them, because of many tiresome household happenings and visits from good old friends. The next ones – comming from Bruxelles – will arrive at the end of the month, staying for one week. I have found a rather cheep lodging place for them, which is not so unreliable as yours turned out to be. But as soon as I will find the time for quiet listening, I’ll send you my ‘echo’ by telephone or by letter. I admire your numerous physical and spiritual engagements, dear Jennifer. As to myself, the burn-out condition dominates, nevertheless I have succeeded in writing this much too long letter!

Much love to both of you

Helga

P.S. The main trouble is probably that I have no self-confidence anymore.

During the summer months we had telephone conversations. On 14th December, 2009, she wrote the following letter:

 

My dear old friends

I take leave of you with just a few words: I finally succeeded in becoming [getting] the ‘green light’ from Switzerland. It was probably the last moment, as they only accept people still being decisive, which means self-responsible, and my mind has been drifting away rapidly during the last months. I can still react and organise, but the sense of registration has collapsed. In addition I became more and more frightful – just as my father did in my age – so I cannot plan any own ways on the street any more.

I am so glad that Eugen has meanwhile found a friend, younger than he is (he approaches to the seventies) with whom a positive future seems possible. She has a house in the same village where he neglected his very attractive apartment since 2004 because of all my accidents etc. I found several younger friends interested in my house-wares and book collections (of course I did not want to irritate them by my true intentions, so I pretended to move to old Swiss friends of mine) hoping that my wonderful friend Eugen will not be overcharged with the evacuation of my apartment.

‘Take my warm-heartiest wishes, my dear, unforgettable friends Jennifer and Philip, for a long continuance of your wonderful partnership, and all your spiritual impulses!

Helga

I received the letter on 17th December and at once rang her telephone number. It was unobtainable, and has remained so ever since.

It is impossible to exaggerate the state of shock I was in after receipt of this letter. Uncertainty about what had happened tormented me and in any mental or emotional crisis I need spiritual help and guidance, so I rang the Reverend Mother of the convent with which I am connected, and told her the terrible story. The vocation of the Sisters is prayer and meditation, and, without such con-templatives I believe the affairs of man would long ago have sunk into chaos. The Reverend Mother told me that the Sisters would pray for Helga and the medical dilemmas that we have to face. Nuns are not just about prayer; they are usually very practical. She said, ‘You must find out what happened to Helga in her last days and hours. Can’t you get hold of the address, or better still the telephone number, of this place in Switzerland and find out?’

Thankful that Helga would be safe in their prayers, I immediately obtained the telephone number of Dignitas in Zürich. Fortunately, there were no electronic voices to contend with. A man who spoke very good English answered. I gave him the name Helga Wieter, and mentioned her intentions and her last letter. I said, ‘That letter was written on the 14th; today is the 17th. Is she expected to come to you? Is she with you? Please tell me. Is she alive or dead?’

The man would tell me nothing. He said, ‘It is confidential; I cannot tell you; it is against the law.’ He repeated this phrase, ‘against the law’, several times. I persisted, saying, ‘She would have come alone; I know she would. Her friends must know what has happened to her.’ He said, ‘I cannot tell you. We have people ringing us to enquire about a husband or wife, but we cannot tell them anything; it is against the law. We even have the police contact us in their enquiries trying to find a missing person, but we cannot disclose information. It would be illegal to do so.’

Still I persisted, saying, ‘Why illegal? That makes no sense. Illegal to whom?’

He told me, ‘We are an association of forty thousand members worldwide. Our members expect and receive confidentiality from us. Any association with a private membership is the same. I cannot help you; it would be illegal.’

I could get nowhere with him. I was left in a burning rage - so it is perfectly legal to give someone a dose of barbiturate knowing that it will kill them, but not lawful to reveal who it has been given to? What sort of law operates in Switzerland? Registration of births and deaths is surely a statutory obligation in any civilised country, and these are public records. At the very least, a funeral cannot be conducted in secrecy, and no one informed.

I have long had severe reservations about Dignitas though I could never clearly say why; its philosophy seems so logical and, in a way, humane. And yet my experience regarding Helga’s death leaves me very uneasy.

All over Christmas I grieved for Helga, and wondered what had happened. Not knowing is probably the hardest thing to cope with. The winter was extreme - a sheet of ice gripped the whole of Northern Europe - and I thought of a frail old lady leaving her home and travelling by train, alone, to Zürich. Did she ever get there? Did she slip on the ice and break another bone, and if so who picked her up? Perhaps she arrived in Zürich and simply got lost in bewilderment in a strange city. I imagined her misery, not knowing where she was, in freezing weather, wandering helplessly around. But perhaps she did arrive at the Dignitas premises, and two doctors examined her and assessed that she was not mentally competent to make a decision for herself. What then? Would she have been sent away, and who would have taken the responsibility of bringing her home? It doesn’t bear thinking about, does it?

Christmas is not a good time to have your mind burdened with such thoughts, nor is it a good time for communication. I tried several times to contact Helga by telephone, but the line was always unobtainable. I resolved to do my best to contact Eugen.

We have a friend, Carole, who speaks German. She agreed to write to Eugen on my behalf, telling him all that I knew, and sending him a copy of her last letter to me. I am sure he had no idea of her intentions. We agreed not to post the letter in the middle of Christmas and New Year festivities, but to send it in early January, three weeks after Helga’s letter of 14 December. I did not know Eugen’s surname, nor his address, so the letter had to be sent to Helga’s apartment, with no more than his Christian name on the envelope in the hope that he would find it. I also wrote to the director of the company for which she had worked for twenty-eight years. Though Helga had retired long since, I felt there might be someone who still knew her. Then I waited.

I waited, but no reply came.

After our Paris days, Helga and I seldom met, but our friendship continued through our letters. We both enjoyed sharing news and views, ideas and reflections. Grieving usually involves going back over the past. I could not visit the place where Helga had died, so I found pleasure and relief in writing several letters to her, as we had done over the years, although I knew there could be no reply. Here are some of the thoughts contained in these letters:

 

Dearest Helga,

In your earlier letter you say, ‘I hope you understand, in spite of religious doubts.’ Of course I understand, dear brave Helga, struggling with burdens you no longer have the strength to bear, knowing that things can only get worse. But: ‘in spite of religious doubts’? There I am not so sure. I have doubts aplenty, but they are not based on religion, because there is no religious teaching on the subject. As far as I am aware, none of the world religions – Christian, Muslim, Hindu, Jewish – or any philosophical teachers of any era can help us. What did Socrates or Aristotle have to say? Or Jesus Christ or Mohammed? Nothing. They had plenty to say about death, but not about man’s ability to prevent death. We are entering a new phase of history and we cannot look to the past for guidance. Religious teaching has to adapt and find a new way. No, Helga, I do not have doubts because I am a Christian. And if anyone starts telling me they ‘know the mind of God’, I think I will scream!

You also said, ‘In my opinion life in age becomes more and more fearful and painful and death is, for me at least, a hopeful aspect.’ These are beautiful and inspiring words, especially as you have always said you do not consider yourself to be a true believer like Eugen (a Catholic) or me (an Anglican). I am sure that your attitude that death is a hopeful prospect is echoed by millions of people worldwide.

Of course, ten or twelve years ago, when you were around seventy, you could have died of cancer. When we were young girls, no one would have been surprised; after all, threescore years and ten was the span of life for mankind. But medicine saved you and you had ten more years of active and happy life. But now you say, ‘Life in age becomes more and more fearful and painful,’ and this leads to suicide. I hope and pray that all went smoothly for you on your last journey, and that none of my worst imaginings came to pass. I wish you had had someone to accompany you, just to make your journey easier … but…

Dear, lovely Helga, you have always been an inspiration to me, and I lament your passing and grieve for your suffering, and hold you in my prayers with love and memories of youthful happiness.

Rest now in peace eternal. Jennifer

Helga was a very considerate and thoughtful person. She wanted to die and she was determined not to trouble anyone. These desires are entirely understandable, and I have heard many people say something similar. Yet, in acting as she did, she has probably caused more turmoil than she could ever have anticipated. For those left behind, the knowledge of suicide is harder than any other death to get over. Shock, grief, guilt and bewilderment are all mixed up in the mind. An endless cycle of self-reproach is common – ‘What could I have done? Where did I fail?’ Even I, hundreds of miles away, feel this. What must it be like for Eugen? Helga told me that she wanted him to have a new life with a new partner, but, in fact, she may have inflicted a wound that could trouble him for the rest of his days.

Helga’s fault was secrecy, but even that is understandable. No one talks about death, and she felt unable to discuss her fears and intentions with Eugen who, she had convinced herself, would be shocked and try to stop her. It is easy to imagine that she could not bring herself to raise the subject, even though, dozens of times, she may have wanted to. She was trapped in the taboo, which is as strong in Germany as it is in England. So she took her last steps alone.

 

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