In the Midst of Life (36 page)

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:

1. Ambulance clinicians from all services work within the Ambulance Service JRCALC Guidelines 2006 (Joint Royal Colleges Ambulance Liaison Committee).
   
2. Ambulance clinicians’ role traditionally has been to:
   
   • Preserve life
     
   • Prevent deterioration
     
   • Promote recovery.
     
3. 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.
   
4. The only way that very ill patients are able to get to hospital will be when someone asks for an ambulance to attend.
   
5. 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

1. A formal Do Not Attempt Resuscitation (DNAR) order is in place, in writing, and given to the crew.
   
2. 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.
   
3. 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.
   
4. 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:

1. The ambulance crew will come running into the house laden with response bag, AED (automatic external defibrillator), an airway bag and drug kit.
   
2. The crew will take the stairs two at a time and rush over to the patient who has collapsed in bed.
   
3. 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.
   
4. 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.
   
5. Next, they will place defibrillator pads on the patient’s exposed chest and commence cardio-pulmonary resuscitation using JRCALC guidelines.
   
6. The crew will intubate the patient with an endotracheal tube, or in some circumstances, a laryngeal mask airway.
   
7. They will gain intravenous access, either using a jugular or peripheral vein; then administer intravenous drugs.
   
8. The
   crew will use the AED to deliver defibrillator shocks if necessary.
   
9. 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.
   
10. 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.
    
11. 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:

1. The Ambulance Service needs to be incorporated into the Integrated Care Approach for all end of life care patients.
   
2. By having the information recorded in the Ambulance Control Centres, the crew would be forewarned.
   
3. Having access to a written DNAR/Advance Directive/ Living Will immediately on arrival will prevent inappropriate clinical intervention being performed.
   
4. 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.

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.