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.