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Movement of eyebrows suggests he has categorised me as ‘stupid as well as useless’.

      ‘Anyway,’ he continued, ‘if I eat, I’ll choke.’

      ‘So let’s think about choking,’ I say. ‘What do you mean by choking, exactly?’

      The eyebrows are starting to look a bit cross, but he explains with great patience, as though I am a particularly dim pupil, that he means choking – when something gets stuck in your throat, and blocks it, and you can’t get it out, and you can’t breathe, and you die horribly in front of the very people you have dedicated your life to protecting … Tears suddenly spill down his cheeks.

      And there it was, the very nub of Eric’s distress: not choking, in fact, but failure to fulfil his mission to protect. He protected the children of so many other families throughout his career, yet now he feels unable to protect his own. He can’t even induce his own death to safeguard their peace of mind.

      ‘And it will be awful for them, and you can’t bear to do that to them?’ I suggest, dabbing his tears and wiping a drip at the tip of his nose. He nods and holds my gaze with his. ‘And how have they responded to choking episodes so far?’ I ask. He considers, and tells me that he hasn’t had any – yet.

      ‘Why do you think that is?’ I say. ‘Just good luck? Soft food? Or what?’

      ‘Well, I’m still waiting for that to start,’ he says. ‘Or rather, I want to die before it starts.’

      ‘So if I were to tell you that people with MND do not choke as a terminal event,’ I say, ‘what would you make of that?’

      ‘I’d ask you for your evidence. Prove it!’

      I have evidence. There is a palliative care survey of several hundred MND patients, followed up until they died, and precisely none of them died by choking. ‘That’s not to say that they didn’t have occasional episodes when they struggled to clear the phlegm in their throats – and it’s hard to clear your throat when your cough is very weak, isn’t it?’ He nods. ‘But nobody died choking, and nobody’s family had to watch them choke to death. Dying is gentler than that. Shall I describe what they are likely to see?’

      Concentrating carefully, he allows me to tell him what we see as people die. ‘That’s amazing,’ he muses slowly. ‘That’s just amazing. So it’s safe for me to swallow?’

      ‘Well, actually no, it’s not safe,’ I remind him. ‘Because some of the food goes down the wrong way, and that will damage your lungs. But if you don’t mind the lung damage, and you want the pleasure of eating, then I’d say you have a choice.’

      He is still listening intently; we are now collaborating, where initially I felt we had been debating.

      ‘And I would say you have more choice than that, too. If you want to avoid pressure ulcers, you could have that feeding tube put through your skin straight into your stomach, to have liquidised meals without the bother of trying to chew and swallow every calorie. And if you decide to stop using it later on, that is your right.’

      Eric, the man who Gets Things Done, has some thinking to do. I leave him to ponder. The following week, I hear that he is to have a feeding (‘PEG’) tube inserted, and will be going home once Grace has learned how to give the feeds. And there our acquaintance might have ended, had it not been for Christmas.

      At home, he used the feeding tube for all his nutrition, but swallowed very small amounts of delicious food created by Grace, just for the pleasure of eating. He often had a coughing spasm after swallowing, but considered this a price worth paying. When he developed another chest infection, he declined to go to hospital but agreed to come to the hospice, where once again he was given the choice of whether to have the chest infection treated, and once again he opted for antibiotics.

      His mood was low. He told one of the nurses that he felt that he was a burden to Grace, and that he wished he could die. Despite this, he wanted to live until Christmas. This was a surprising contradiction, and the nurse explored it. Eric thought that there was now insufficient time for his family to recover from his death before Christmas, even if he died in the next few days. Accepting antibiotics was part of his new plan to control the timing of his death. All his plans to shorten his life had failed, so now he was trying to prolong it instead.

      The nurse asked about the Christmas deadline, and the full extent of Eric’s love of family time at Christmas poured out: the gathering, the gifts, the rituals about particular decorations on the tree, the songs, the family stories with new embellishments each year. It was a time when they were thankful for each other, for their family life. Eric wanted that Christmas experience, for himself and for all of them, just one last time.

      On the ward round the nurse repeated this conversation, and the team pondered the dilemma. Eric was unlikely to live beyond mid-November: the muscles in his chest were becoming weaker, his breathing at night-time was beginning to fail, and he had decided that he would not use a ventilator to assist his breathing. He was running out of options. If only Christmas were closer …

      When we proposed moving Christmas, Eric grinned. ‘There will have to be a tree …’ he said.

      It was a joy to see that tree, the table set with linen, china and glasses, the stockings along the hospice window ledge. On a windy autumn evening the family arrived in Christmas jumpers and fancy clothes, carrying gifts and musical instruments. Their host greeted them at the front door of the building in his bed, pushed by two nurses wearing Santa hats, who delivered him, along with his oxygen cylinder and tubing, into the training room the catering team had set up like a five-star restaurant. Off-duty staff in formal dress waited on the family; turkey and trimmings were served; Eric’s oxygen was turned off briefly so the pudding could make a glorious, flaming entrance. After dinner, those of us on duty could hear guitars, Christmas carols and lots of laughter coming from the party.

      Two days later, Eric sent for me. He told me that he wanted to stop his antibiotics. ‘I’m ready to die,’ he said, ‘and this is my chance. I’m glad I didn’t kill myself earlier. It would have been too soon, I would have missed so much. I had no idea that I would be able to tolerate living such a changed life.’

      He closed his eyes. Thinking that he was tired, I got up to leave. He commanded me to sit down and listen. ‘This is important,’ he said. ‘People need to understand this. You need to understand this. I wanted to die before something happened that I couldn’t bear. But I didn’t die, and the thing I dreaded happened. But I found that I could bear it. I wanted euthanasia, and no one could do it. But if they had, then when would I have asked for it? Chances are I would have asked too soon, and I would have missed Christmas. So I’m glad you couldn’t do it. I’ve changed my mind, and I wanted to tell you. I was angry with you because you’re part of the System that says no to assisting with dying. But you weren’t saying no to dying, you were saying yes to living. I get that now. I’m a teacher, and you need to tell other people this for me, because I won’t be here to tell them.’

      And then I was dismissed from the head teacher’s presence.

      In fact Eric’s pneumonia was improving, but he was becoming very weak. The day after this conversation, he was too sleepy to talk. A day later, he was unconscious. Surrounded by his family, and with a Christmas tree in the corner of his room, he died gently and without any hint of choking, after that last wonderful Christmas.

Never Let Me Go

      Denial is an effective psychological mechanism for dealing with distressing situations. By choosing not to believe the bad or dreaded thing is happening, a person can avoid distress completely. Difficulties may arise as it becomes harder and harder for them to ignore evidence that something is seriously wrong: if they have not accepted any bad news at all, then nor have they made any emotional adjustment for it. If their denial breaks down suddenly, they may become completely overwhelmed by the realisation of how bad things really are.

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