**" All that is good in human nature is here " : life and death in an NHS hospice.
Is there a good way to approach the end of life ?
Rachel Clarke, a palliative care doctor, believes there is … and that we can all learn from her patients.**
She’s called Gemma.
She’s three years old. She fell into a canal,” said a senior nurse. “By the time her parents managed to get her out, apparently she’d already stopped breathing.” “Paramedics three minutes away,” called another nurse, holding the scarlet phone on which emergencies were called through. With a grace and efficiency akin to choreography, a team of professionals who moments beforehand had been as disparate as atoms, dispersed across the hospital, were poised around an empty resuscitation bed, waiting as one to swing into action.
The consultant quietly confirmed each team member’s role. The anaesthetist, responsible for airway. The scribe, who would note down, in meticulous detail, the timings, the drugs, the doses, every iota of care which, if we were lucky, might snatch life back from lifelessness. Doctor one, doctor two – the roles and responsibilities went on. Then, a moment of silence before the paramedics’ brute force pushed a trolley through the swing doors and there, tiny, limp and pale, lay a toddler, unmoving beneath the harsh fluorescent lights.
It was impossible to hear the paramedics’ handover above the screams of Gemma’s mother. “Save her!” she pleaded, over and over. “Please, please, save her!” Gently, a nurse discussed with her whether she wished to stay or leave the bay for a moment. The crash team worked on, its focus absolute. In moments, the child had been intubated. Tubes and electrodes sprouted everywhere. Tiny, toddler-sized chest compressions continued, interrupted every two minutes to check for the resumption of a heartbeat.
Too inexperienced to help, I hovered on the periphery, trying not to wear my shock visibly. I had never before seen a child this unwell. Unless the crash team managed to restart the heart, I was watching, in effect, a dead little girl. I thought of my own toddler, safe at nursery, and of the magnitude of the horror with which Gemma’s mother, sequestered in a relatives’ room, must now be seized.
On and on the crash team worked. Compressions, adrenalin, electric shocks, compressions. A miniature mannequin, manhandled with conviction. The collective will in the bay for this child to live, to survive, was so strong as to be almost palpable. A forcefield of longing around the bed. Its silent incantation: come on, come on, come on, come on.
Fifteen, 20 minutes must have passed. The resuscitation attempt was going nowhere. In an adult, the risk of brain damage is high, but Gemma’s youth gave her body resilience. I bit my lip to keep tears at bay. And then, impossibly, before our disbelieving eyes, the chaotic scrawl of the ECG trace was jolted by the latest shock into something that coalesced into a normal rhythm. Gemma’s stunned, battered, fibrillating heart had somehow started to beat again. This body’s submersion in brackish water, these lungs fully flooded with rank green canal – despite it all, this little heart had maintained its capacity for life. A resurrection had occurred. Right there, on crumpled NHS cotton, a girl had been brought back from the dead. I wanted to cheer from the rooftops.
Not for one second did the team’s concentration dip. The luxury of jubilation was forbidden while her life, her brain, still hung in the balance. ROSC – return of spontaneous circulation – is only the first step from an arrest back to health, and Gemma was whisked straight to the paediatric intensive care unit.
The smiles after she departed could not have been any broader. Consultant hugged staff nurse hugged student, in a rare moment of shared elation. But what stayed with me, as I walked out of A&E that night, was not this eruption of joy but the preceding ruthless dispassion. That total focus while I, on the sidelines, had fought not to quiver and cry. The crash team, simultaneously human and robotic, crunching through the protocols that maximised a child’s chances of life. I wanted to eradicate my human weakness and become, like these doctors, part machine.
The man widely regarded as the father of modern medicine, the Canadian professor William Osler (1849‑1919), famously recognised the unique importance of stories in medicine. Osler insisted that medical students should learn from seeing and, crucially, from talking to their patients. Memorably, he said: “Just listen to your patient, he is telling you the diagnosis.”
Those words are as true today as they were back then. Storytelling is the bedrock of good medical practice.
The author Philip Pullman goes one step further, stating that: “After nourishment, shelter and companionship, stories are the thing we need most in the world.” In boldly insisting on stories as imperative for human survival he imbues them with a transformative force in medicine. It is undeniable that the meanings we construct around our afflictions and diseases, the stories we tell ourselves about what is wrong, and where we are heading, can overturn our experience of illness.
You might imagine that storytelling is the last thing on a doctor’s mind. We are all far too busy doing our jobs, often with time running out. But Pullman’s words are nowhere more apt than in a hospital, where what heals is not confined to a doctor’s drugs or scalpel blades. It is the quieter, smaller things too – being held, heard and shown you matter – that make patients feel cherished, and hospitals humane.
The NHS hospice where I work today is strikingly beautiful. Natural light streams in from skylights and floor-to-ceiling French windows, allowing patients to look out on gardens, trees and the birds just outside. There are whirlpool baths, massage, art and music therapy, ice-cream and homemade smoothies on tap. We hold weddings here, set up date nights, sneak in pets, break the rules. There is even a drinks trolley, wheeled from room to room twice a day, amply stocked with fine wines and cans. Because what better way, for those who fancy a drink, of remembering normal life back home?
Bird food and beer might not seem revolutionary, but when I arrived here, seven years after starting life as a doctor, they signalled something thrillingly radical. For all the care contained within hospital walls, it would be hard to design a more dehumanising space than your typical busy teaching hospital.
Even after resolving to specialise in palliative medicine, the decision was less a conviction than a leap of faith. Indeed, during my early days in the hospice I felt like a brand-new doctor all over again, learning an alternative medical paradigm, one with people, not diseases, at its heart.
Simon was a man in extremis. He had a cancer of his thyroid that was threatening to suffocate him. Already requiring oxygen, this morning his breathing had taken a turn for the worse and now, we had been told, he was fighting for air.
A former policeman in his 60s, Simon had retired a few months earlier. He was looking forward to having time to while away in the fresh air, walking and jogging. Shortly afterwards, he had noticed a lump in his neck, painless, innocuous and perhaps, he had assumed, related to a recent head cold. But the lump, unlike the cold, persisted and, more unnervingly, continued to grow. Still more curious than concerned, he visited his GP.
The speed of his referral to hospital impressed him, innocent of the fact that he was on a two-week cancer pathway, its celerity commensurate with his doctor’s worst fears. There was to be no well-earned peace in the countryside for Simon. The scan became a biopsy, and the biopsy a consultant, murmuring cryptically about inoperability, as Simon sat stricken, pinned to his seat, hearing nothing of substance after “cancer”.
I heard him before I set eyes on him. Specifically, I heard the sound of air being sucked into his lungs through an airway severely compressed by tumour. Stridor – the harsh rasp of air with each intake of breath, audible only when the trachea is critically narrowed. Once heard, never forgotten.
When I entered his room, Simon was sitting bolt upright, eyes darting frantically, his shirt ripped off and both hands gripping the bed like his life depended on it. From deep inside his body, from the depths of his spinal cord, he trembled with fear. Beside him stood a woman in her 30s, distraught and dishevelled, saying: “It’s OK, Dad. Look. Look, the doctor’s here. Everything’s going to be OK now.”
Simon stared up at me, beads of sweat on his brow, gulping for air. There was no way he could sustain this work of breathing. At the same time, I observed, the oxygen required was sufficiently low to be delivered not through a mask, but through small tubes in the nose. Although petrified, and with good reason, he was not – yet – in respiratory failure.
In an A&E department, Simon would have been gowned, cannulated and hooked up to lines and monitoring. I chose instead, you might argue, to gamble. If Simon was about to die, I reasoned, none of this paraphernalia was going to prevent that. But if, as I suspected, panic had exacerbated his airway obstruction, then I knew how to help.
I ascertained from Sophie, Simon’s daughter, that he had completed radiotherapy to his thyroid a few days earlier. His oncologist’s hope had been to shrink the tumour, eking out a little more time, perhaps even enabling him to reach his grandson’s sixth birthday.
“Simon, I am confident we can help you feel better,” I began, “but I’d like to sort out some treatment straight away. Then we can talk. Is that OK?” He nodded, mute.
I worked fast. The nurses brought the large dose of steroids that would, I hoped, begin to shrink the swelling in Simon’s neck. Next, a tiny dose of a fast-acting sedative, just enough to take the edge off his panic.
“Would you like me to explain what I think is happening?” I asked him, keen to allow the sedative more time to calm his fears. “Yes,” he said clearly – the first word he had been capable of speaking out loud. I spoke evenly, unhurriedly, hoping to instil trust and confidence. “I think there are two problems, Simon. First, there is your tumour, pressing on your windpipe, but there is also the radiotherapy, which has damaged the tissues in your throat and caused them to swell. We see this very commonly. The breathing often becomes worse for a few days after radiotherapy, maybe a week or so, before it gets better. Steroids can really help bring down the swelling.”
As I talked, Simon’s eyes never left me. His gasps, I noticed, were beginning to decelerate. “How does it feel now? Is the injection we just gave you helping at all?” “Well, I don’t feel quite as bad,” he said doubtfully. Out of the corner of my eye I saw that Sophie was crying.
Simon began to describe living alone with his cancer, having been widowed a few years previously. “It’s all been so quick. Too much to take in. Sophie, if I’m honest, is my rock, but she has Timmy, her boy, to look after as well.”
“Don’t be ridiculous, Dad,” Sophie interjected, almost angrily. “You know looking after you is no problem. We all love being with you, especially Timmy.”
Simon could not meet his daughter’s eye. His chest, damp with sweat, still undulated with muscle, a torso sculpted from lifelong activity, not yet effaced by cancer. I wondered how much it cost him to appear this vulnerable in his daughter’s eyes, and whether shame was inflaming his distress.
Gently, I kept tweaking the oxygen downwards. “Simon, you know this is really encouraging? You’re managing to talk in full sentences. I dropped the oxygen down as low as it will go a good 10 minutes ago. May I try taking it off you?”
“You’re a sly one,” he exclaimed, with the faintest trace of a smile.
The hint of a relationship forged, I broached the topic of the future. He cut me off instantly. “Look, I’m not stupid,” he exclaimed. “I don’t have one, do I? This is it. I know what’s going on.” “Dad,” pleaded Sophie, tears flowing. “She’s trying to help. Don’t shout at her.”
There are moments in medicine when what you say next feels as pregnant with risk as a surgeon’s first incision. The right words, used wisely, can bridge the airiest expanse between you and your patient but, if misjudged, may blow trust to pieces. In scarcely a month, cancer had snatched from this man of action and authority his health, his future, his strength and his fearlessness. And today, perhaps worse than all of that, his daughter had witnessed him writhing in fear.
Few sensations are more terrifying than that of fighting to breathe. In that moment, every mental sinew you have ever possessed – lifelong habits of logic, love, faith and reason – are wiped out by a frenzied craving for air. Simon had been fighting for his life, the most powerful and desperate of all human instincts. I needed to give him control, if only over our conversation.
“Simon, are you the kind of person who likes to discuss everything frankly,” I began, “or do you prefer to take things one day at a time, without speculating about the future?” “I already know I’m dying,” he responded. “What else could you possibly tell me?”
“Well, people often assume that once you arrive here, you will never leave. But around half of our patients don’t die here. They go home again once we’ve managed to sort out their symptoms. It’s not always a one-way ticket.”
He blinked. No one said anything for a while, as we listened uncomfortably to the scrape of his stridor. Finally, it was his daughter who spoke: “I didn’t realise that, Dad. Did you?”
Silence. My intuition was that Simon not only feared never leaving the hospice, but was also convinced he was imminently dying. Perhaps the only way to reach him was to confront this head-on. “One of the things I’ve noticed working here, Simon, is how often patients feel unable to ask about the thing they’re most preoccupied with, which is what it’s actually going to be like when they die – and I wonder whether this is something you’d like to talk about?”
I saw a flash of horror distort Sophie’s face; but her father, if anything, looked relieved. “Go on,” he said cautiously, giving nothing away.
“OK. But please stop me at any point if you don’t want me to continue.” I glanced at Sophie. Simon confirmed that he wanted her to stay. “So … we tend to see the same patterns over and over in people with cancer, or another terminal illness, who are approaching the end of life. One of the first things many patients notice is losing their strength, their energy. Things they used to take in their stride become a real physical and mental effort. I’m guessing you’re already aware of that ?”
A rueful roll of the eyes. “No kidding. I used to run marathons. Can’t even get up the stairs now.”
“That loss of energy gradually worsens. You might find you need a nap most days, more than one, probably. Then, one day, you realise you’re sleeping more than you’re awake. It’s not painful or horrible, it’s just immensely frustrating. Patients can find it helps to try and plan in advance a bit, saving up their energy for the things that really matter.”
“Like Timmy,” Simon interrupted. “I like to know when he’s visiting so I can have a sleep beforehand.” “I didn’t realise that, Dad,” said Sophie. “Well, I want to give him my best, don’t I? And I don’t want to lose a second with him.”
Sophie now turned to me. “Timmy’s dad’s not around any more, you see. Left when he was two. Dad’s more like his real father.”
“I see,” I said slowly, computing the layers of loss, more intricate and heftier than I ever imagined.
By now, I noted, Simon had been breathing calmly for half an hour without requiring any additional oxygen. Encouraged, I went on. “Often, at the end, there aren’t any dramatic changes. That sleepiness continues. A patient finds they are sleeping nearly all of the time. You stop feeling hungry and you don’t want to eat. You may stop feeling thirsty, too. Then, one day, rather than sleeping, you slip into unconsciousness. It’s not a distinction you are even aware of. Your brain is just more deeply unresponsive. Sometimes, I wonder if this is the body’s way of protecting the mind – you stop being afraid, you’re oblivious to it all.”
I paused, trying to gauge Simon’s reaction. “Shall I go on?” I asked. The most perfunctory of nods, so I continued. “You might be thinking that what you’ve experienced today is nothing like what I’ve just described. You’ve felt as though you’re suffocating to death and I can’t imagine how awful that must be. But what I can promise you is that, if you feel like that again, we will still be able to help you. We can take away that feeling of panic with drugs that work almost instantly. You don’t need to feel like that again. We will be right here for you, whatever happens.”
Both Simon and Sophie were quietly crying. The sky was darkening outside. We were sitting, I realised, in a small pool of light from the adjustable lamp just above Simon’s bed. A father, a daughter and a doctor, surrounded by shadow, staring together at the death to come. Weighing it, considering its shape and form, perhaps for the very first time. The hostility with which Simon had been bristling was gone.
“How long do you think I have left?” he asked me directly.
“I have no reason to think you are going to die today, Simon. I’m not even certain the blockage in your airway is what will kill you. I do think your time is short – weeks, not months, perhaps only very short weeks – but I would love to believe we can get you home for a bit, if that’s what you would like.
For a while, Simon said nothing. The silence, though thick with emotion, was not strained. Finally, he raised his eyes to mine and smiled. “OK. Maybe I’ll get to my boy’s birthday too. Thank you, Rachel – I mean it.”
My heart, for a beat, threatened to knock me off balance but only later, that night, did I allow myself to feel. A dying man had looked his end in the eye – all of it, the worst of it, potential suffocation – and yet, in that moment of profound mortal reckoning, with every single thing he loved slipping from his grasp, had found within himself the strength to look outwards, towards what mattered more than anything: the human beings he loved. How, I wondered, could someone be so aghast at their weakness while behaving with such unseen strength?
I cried that night. But not for what we lose. It is who we are that moves me, time and again, in the hospice. When people ask me if my job is depressing, I reply that nothing could be further from the truth. All that is good in human nature – courage, compassion, our capacity to love – is here in its most distilled form. So often, so reliably, I witness people rising to their best, on facing the worst. I am surrounded by human beings at their finest.
In 2017, my dearest Dad was himself a dying man. He had spent half a year on the chemotherapy carousel. Infusions, blood tests, nausea, fatigue, infusions, damaged nerves, infusions, bleeding skin. Hope, more than anything, kept him coming back for more. Even when the scans showed terminal spread, still he yearned, burned, for more life. He took these monthly batterings of the cytotoxic drugs because they allowed him to imagine a future.
Even as new symptoms revealed themselves, Dad managed to maintain his poise. He was a doctor and, I suppose, his training was useful. None of it came as a surprise to him. “There’s something you need to know,” he told me later. Over the weeks he had sat down in private and, through the fog of cancer fatigue, written letters to his wife, children and grandchildren. “They’re in a sports bag in my wardrobe, Rachel. You’ll find them under my shirts.” This was love, painstakingly scrawled and sealed inside envelopes, a legacy of words for his family.
After the funeral, I returned to work a different doctor. I have known the taste and weight of grief. Now, when I enter a patient’s room, I recognise the sunken eyes and tired frowns of those who cling to the one who would be lost to them. I understand that from the inside out, grief, like love, is non-negotiable, and that the only way to avoid the pain is to opt out of ever loving.
Above all, I have learned from my conversations with my father that being given a terminal diagnosis changes both everything and nothing. Prior to this news, a man of 74, he knew he would die one day, just not when exactly. And after this news, he knew he would die one day, just not when exactly. Everything he had always loved about life was still there to be loved, only more attentively now, more fiercely. All that had changed was the new sense of urgency, the need to savour each day and its sweetness.
• Dear Life: A Doctor’s Story of Love and Loss, by Rachel Clarke, is published by Little, Brown on 30 January. >