Читать книгу With the End in Mind: Dying, Death and Wisdom in an Age of Denial - Kathryn Mannix, Kathryn Mannix - Страница 16

The strength of the human spirit is astonishing. People all think that they have a limit, beyond which they cannot endure. Their capacity to adapt and to reset their limits has been a constant wonder to me over my decades in working with people living with some of the most challenging illnesses imaginable.

Eric was a Head Teacher. With capital letters. He was an organiser, a man who Got Things Done. He managed a large inner-city comprehensive school, and ‘his kids’ knew that he would support them through any challenge, whether by telephoning the deans of their university faculties or by attending their interviews under caution at police stations.

Being a head teacher demands a lot of one’s time. Over his career, Eric (and his family) had made this sacrifice, and he was looking forward to spending much more time with his children and grandchildren when he retired. Developing motor neurone disease was not part of his plan.

His illness presented itself slowly. He caught his toes from time to time while running on a treadmill, but when he fell off the treadmill completely, his GP found some odd reflexes in his legs and sent Eric to hospital to check he hadn’t damaged his back. The spinal surgeons said his back was fine, but he had three years or less to live. Those ‘odd reflexes’ and occasional trips were the first signs of a creeping paralysis of all his muscles as they gradually lost their instructions from the nerves that connect them to the spine and brain. This is MND.

Remember, Eric was a head teacher: he got things done. Naturally, he looked up his illness on the internet. The news, delivered on screen, in writing and with no pacing or pauses for thought, was horrifying. Eric decided that he would kill himself before he became a burden to his wife. He considered a variety of ways to do this. Should he fake an accident by driving into a motorway bridge support? Or could he use tablets? Perhaps a plastic bag? He got more information from the internet, and tried to imagine how and when he should act.

Faking an accident seemed his best plan, and he aimed to kill himself before the grandchildren could notice his illness. He hated the idea that they might consider him decrepit. If he accomplished his mission before the summer, then he judged that everyone would recover in time to take a special holiday at Christmas that he had booked, with gleeful anticipation, when he retired. Eric had a plan and a timeline. On a bright spring morning he set off in his car ‘to collect a parcel from the post office’, with the secret intention of killing himself. The next thing his wife knew was when he walked back into the house just a few minutes later and said, ‘I can’t manage the gearstick.’ Paralysis of his arms had begun, and his driving days were over. So much for Plan A.

Spring became summer, and Eric gradually lost the use of his arms and legs. He had an electric wheelchair that he used in the house and around the local streets. He played with his grandsons, who were thrilled with his wheelchair and covered it with Batmobile stickers. He was astonished that they were not at all daunted by his increasing immobility, and loved straightening his spectacles or helping him to blow his nose. Carers helped his wife to get him up and dressed in the mornings and back into bed at night; his daughter who lived nearby came with her sons after school each day to give her mother a chance to go shopping. Eric realised that committing suicide with tablets (Plan B) was likely to be impossible now that he was never alone.

So Eric, who had been a Head Teacher who Got Things Done, was now a man in a wheelchair who had things done to him. He had expected that he would hate this, that he would be a burden, and that he would rage against the indignity of immobility. But to his surprise, he found that he was still a man who could Get Things Done. The vegetable garden he had planned was tended by his wife and son, with Eric nearby as adviser (‘That’s not a weed, it’s a row of parsnips, you turnip!’), and they relished their outdoor time together. He designed a pot garden for herbs beside the kitchen door, and it was planted by his grandsons under his supervision. He played chess, read books, savoured a fine single malt.

Eric’s wife, Grace, was a great cook, and relishing his meals became Eric’s daily pleasure. By the summer, though, even this was a lengthy chore as the task of chewing and swallowing became more difficult. Along with eating problems, Eric had increasing difficulty with speech as his lips and tongue became weaker. He knew from his internet research that some people with his condition needed feeding tubes to keep them nourished. He decided that he would rather be dead than not eat ‘the way nature intended’, and wondered whether he could starve himself to death. This became Eric’s Plan C, although he didn’t yet have a start date.

At midsummer, Eric developed a new problem. In effect, he had delicious-dinner-related pneumonia, because his swallowing muscles no longer protected the top of his windpipe. Some of that lovingly prepared soft food had been silently sliding down into his lungs when he swallowed. He wondered about letting himself die of his chest infection, but because he was hot, breathless and uncomfortable he opted to have treatment. He was admitted to hospital for intravenous antibiotics.

I first met Eric that week. He wasn’t sure the palliative care team had anything to offer him. Weren’t we a bit useless? He explained his absolute opposition to a feeding tube. He explained his hope of an early death so that the family could recover and have a happy Christmas. He explained his belief that euthanasia would be a good treatment for him, and his frustration that it was forbidden by law. He explained his decision to stop eating as soon as he was sent home from hospital.

It was clear that this was a man who Got Things Done. If he decided to starve himself, he would succeed. So we discussed what help he might need to remain as comfortable and as in-charge as possible while he was dying. He said that he feared pressure ulcers on his skin (very sore and possibly smelly), and seeing his family in distress. And choking – he was pretty certain that his illness would end in an episode of choking. Taking his concerns one by one, we considered ways to address them.

Pressure ulcers are sores that break the skin open, usually where it is squeezed and stretched between a bone on the inside of the body and furniture or clothing on the outside. They can be very painful (think how much a single blister hurts in a tight shoe), and become more likely as a person loses the ability to shift their position on their mattress, and as they have less fat padding their skin. So Eric was right – I agreed that he was a sitting duck for pressure ulcers. This unfortunate pun was the first glimmer of humour in our relationship. His eyes twinkled and his lips twitched, and he gave a wheezy, weak laugh.

Potential ways to avoid pressure ulcers, I suggested, might be to keep him rotating on a rotisserie-type gadget not yet invented for humans, or to avoid malnutrition.

‘But,’ he countered, ‘if I avoid malnutrition, then I won’t be killing myself, will I?’ 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.