came. Peter said all the prayers with him. He never looked afraid. He told me goodbye was the wrong word, that this was au revoir. Until we see each other again …’ Her eyes were brimming, and she blinked her tears onto her cheeks, ignoring them as they ran into her wrinkles.
‘So let’s talk about your illness,’ said our leader. ‘First of all, let’s talk about pain. Has this been a very painful illness so far?’
She shakes her head. He takes up her medication chart, and points out to her that she is taking no regular painkillers, only occasional doses of a drug for colicky pain in her abdomen.
‘If it hasn’t been painful so far, I don’t expect it to suddenly change character and become painful in the future. But if it does, you can be sure we will help you to keep any pain bearable. Can you trust us to do that?’
‘Yes. I trust you.’
He continues, ‘It’s a funny thing that, in many different illnesses that cause people to become weaker, their experience towards the end of life is very similar. I have seen this many times. Shall I tell you what we see? If you want me to stop at any point, you just tell me and I will stop.’
She nods, holding his gaze.
‘Well, the first thing we notice is that people are more tired. Their illness saps their energy. I think you are already noticing that?’
Another nod. She takes his hand again.
‘As time goes by, people become more tired, more weary. They need to sleep more, to boost their energy levels. Have you noticed that if you have a sleep during the day, you feel less weary for a while when you wake up?’
Her posture is changing. She is sitting up straighter. Her eyes are locked on his face. She nods.
‘Well, that tells us that you are following the usual pattern. What we expect to happen from now on is that you will just be progressively more tired, and you will need longer sleeps, and spend less time awake.’
Job done, I think. She can expect to be sleepy. Let’s go … But our leader continues talking.
‘As time goes by,’ he says, ‘we find that people begin to spend more time sleeping, and some of that time they are even more deeply asleep, they slip into a coma. I mean that they are unconscious. Do you understand? Shall I say it in French?’
‘Non, I understand. Unconscious, coma, oui.’ She shakes his hand in hers to affirm her understanding.
‘So if people are too deeply unconscious to take their medications for part of the day, we will find a different way to give those drugs, to make sure they remain in comfort. Consoler toujours. Yes?’
He must be about to stop now, I think. I am surprised that he has told her so much. But he continues, his gaze locked onto hers.
‘We see people spending more time asleep, and less time awake. Sometimes when they appear to be only asleep, they are actually unconscious, yet when they wake up they tell us they had a good sleep. It seems we don’t notice that we become unconscious. And so, at the very end of life, a person is simply unconscious all of the time. And then their breathing starts to change. Sometimes deep and slow, sometimes shallow and faster, and then, very gently, the breathing slows down, and very gently stops. No sudden rush of pain at the end. No feeling of fading away. No panic. Just very, very peaceful …’
She is leaning towards him. She picks up his hand and draws it to her lips, and very gently kisses it with great reverence.
‘The important thing to notice is that it’s not the same as falling asleep,’ he says. ‘In fact, if you are well enough to feel you need a nap, then you are well enough to wake up again afterwards. Becoming unconscious doesn’t feel like falling asleep. You won’t even notice it happening.’
He stops and looks at her. She looks at him. I stare at both of them. I think my mouth might be open, and I may even be leaking from my eyes. There is a long silence. Her shoulders relax and she settles against her pillows. She closes her eyes and gives a deep, long sigh, then raises his hand, held in both of hers, shakes it like shaking dice, and gazes at him as she says, simply, ‘Thank you.’ She closes her eyes. We are, it seems, dismissed.
The nurse, our leader and I walk to the office. Our leader says to me, ‘That is probably the most helpful gift we can ever give to our patients. Few have seen a death. Most imagine dying to be agonising and undignified. We can help them to know that we do not see that, and that they need not fear that their families will see something terrible. I never get used to having that conversation, even though it always ends by a patient knowing more yet being less afraid.’
Then, kindly overlooking my crumpled tissue, he suggests, ‘Shall we have a cup of tea?’
I escape to brew the tea and wipe my tears. I begin to reflect on what I have just seen and heard. I know that he has just described, with enormous skill, exactly what we see as people die, yet I had never considered the pattern before. I am amazed that it is possible to share this amount of information with a patient. I review all my ill-conceived beliefs about what people can bear: beliefs that had just scrolled through my startled and increasingly incredulous consciousness throughout that conversation; beliefs that would have prevented me from having the courage to tell Sabine the whole truth. I feel suddenly excited. Is it really within my gift to offer that peace of mind to people at the ends of their lives?
This book is about my learning to observe the details of that very pattern our leader explained to Sabine all those years ago. In the next thirty years of clinical practice, I found it to be true and accurate. I have used it, now adapted to my own words and phrases, to comfort many hundreds, perhaps even thousands, of patients in the same way that it brought such comfort to Sabine. And now I am writing it down, telling the stories that illustrate that journey of shrinking horizons and final moments, in the hope that the knowledge that was common to all when death took place at home can again be a guide and comfort to people contemplating death. Because in the end, this story is about all of us.
The pattern of decline towards death varies in its trajectory, yet for an individual it follows a relatively even flow, and energy declines initially only year to year, later month to month, and eventually week by week. Towards the very end of life energy levels are less day by day, and this is usually a signal that time is very short. Time to gather. Time to say any important things not yet said.
But sometimes there is an unexpected last rise before the final fall, a kind of swansong. Often this is unexplained, but occasionally there is a clear cause, and sometimes the energy rush is a mixed blessing.
Holly has been dead for thirty years. Yet this morning she is steadily dragging herself out of the recesses of my memory and onto my page. She woke me early; or perhaps it was waking on this misty autumn morning that brought her last day to mind. She twisted and twirled her way into the focus of my consciousness: initially just images like an old silent-movie reel showing disjointed snatches of her pale smile, her pinched nose, her fluttering hand movements. And then her laugh arrived, with the crows outside my window: her barking, rasping laugh, honed by the bitter winds along the industry-riven river, by teenage smoking and premature lung disease. Finally, she drew me from my warm bed and sat me down to tell her story, while mist was still bathing the gardens beneath an autumn dawn.
Thirty
