In the Midst of Life

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”.’