In the Midst of Life

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.