In the Midst of Life

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.’
    Allthis 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. ButJohn 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