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 years ago, arriving at my first hospice job with several years’ experience of a variety of medical specialties, some training in cancer medicine and a freshly minted postgraduate qualification, I probably saw myself as quite a catch. I know that I was buoyed up by the discovery that palliative care fitted all my hopes for a medical career: a mixture of teamwork with clinical detective work to find the origins of patients’ symptoms in order to offer the best possible palliation; of attention to the psychological needs and resilience of patients and their families; honesty and truth in the face of advancing disease; and recognition that each patient is a unique, whole person who is the key member of the team looking after them. Working with, rather than doing to: a complete paradigm shift. I had found my tribe.
The leader of this new hospice had been on call for the service without a break until my arrival in early August. Despite this he exuded enthusiasm and warmth, and was gently patient with my questions, my lack of palliative care experience, my youthful self-assurance. It was a wonder to see patients I already knew from the cancer centre, looking so much better than when they had recently been in my care there, now with pain well controlled but brains in full working order. I may have thought highly of myself, but I recognised that these people were far better served by the hospice than they had been by the mainstream cancer services. Perhaps my previous experiences were only a foundation for new knowledge; perhaps I was here not to perform, but to learn. Humility comes slowly to the young.
After my first month of daily rounds to review patients, adjusting their medication to optimise symptom control but minimise side-effects, watching the leader discuss mood and anxieties as well as sleep and bowel habit, attending team meetings that reviewed each patient’s physical, emotional, social and spiritual wellbeing, the leader decided that I was ready to do my own first weekend on call. He would be back-up, and would come in to the hospice each morning to answer any queries and review any particularly tricky challenges, but I would take the calls from the hospice nurses, from GPs and hospital wards, and try to address the problems that arose. I was thrilled.
Holly’s GP rang early on the Saturday afternoon. Holly was known to the city’s community palliative care nurses, whose office was in the hospice, so he hoped that I might know about her. She was in her late thirties, the mother of two teenagers, and she had advanced cancer of the cervix, now filling her pelvis and pressing on her bladder, bowels and nerves. The specialist nurses had helped the GP to manage her pain, and Holly was now able to get out of bed and sit on the outdoor landing of her flat to smoke and chat with her neighbours. When she developed paralysing nausea in the previous week, her symptoms were improved greatly by using the right drug to calm the sickness caused as her kidneys failed, as the thin ureter tubes that convey the urine from kidneys to bladder were strangled by her mass of cancer.
Today she had a new problem: no one in her flat had slept all night, because Holly wanted to walk around and chat to everyone. Having hardly walked more than a few steps for weeks, overnight she had suddenly become animated and active, unable to settle to sleep, and she had woken her children and her own mother by playing loud music and attempting to dance to it. The neighbours had been banging on the walls. At first light her mother had called the GP. He found Holly slightly euphoric, flushed and tired, yet still dancing around the flat, hanging onto the furniture.
‘She doesn’t seem to be in pain,’ the GP explained to me, ‘and although she’s