The story of a dying girl, and how her family brings healing to the PICU nurses and doctors through their courageous, compassionate decision-making in her end-of-life management.
“This family’s brave, selfless and clear-minded approach to their daughter’s last days showed me that it is still possible for me and my colleagues to heal in the ways we want to heal, hurt in the ways we accept we will hurt, and not harm in ways we never, ever intended to harm.”
Told with permission from all parties involved, including the patient’s family.
Some days, man. Some days. We’ve all had them. No one told me when I started,
“Look, Medicine is a game of ghosts.” We are haunted by those we see, those we touch. The ghosts are three-dimensional, fully realised. They are in brilliant colour, surround sound.
Your hands still feel their warm blood and cold skin. You can still smell those final minutes, blood like a penny beneath your tongue, vomit, the plastic of defibrillation pads reminding you of new trainers, thick barbecue smell of singed fat and muscle. The faces of those you couldn’t save. The faces of those with something so catastrophically wrong, there was no way to drag them back out of the hole into which they were sinking.
The shocked and suddenly slack faces of the wife, the husband, the sons and daughters, the parents, the ones you’ve taken into THAT room, sat them down, and started to say, “I’m really sorry, but…” while you’re strung out and dazed yourself from what you’ve just been through.
I’m sorry, I’ll stop. We all have those details, I know. Sometimes they come out, even when you’re not really ready to face them. But, for me, it’s the stories that get me. All of our patients come with their stories, their tales. It’s these little details of our lives and what we’ve been through that binds us together and gives us our humanity. It’s the stories that we tell, that we remember, that hit us hardest. Those memories are the ones that are buried deepest, rooted around the oldest parts of our brain, so entangled with our emotions and our senses that when they surface, it’s overwhelming.
So this is supposed to be about sharing. I guess it’s about catharsis, and it is, but…
I want to try and give voice to someone whose voice is no longer with us. I think he would like that.
This is a story about a warm summer’s night. I work in a rural district general hospital as a consultant in Anaesthetics and Intensive Care in the UK. We don’t have neuro or cardiac surgery, but because we’re remote, we deal with a lot of things ourselves before transfer – and it’s often us who have to do the transfer. For some reason, I have a near 100% record of some kind of intracranial disaster on my ICU weeks. This was one of those.
I was called from home to resus on the Saturday for a teenage boy who had been hauled out of the river where they’d been swimming. He had been in cardiac arrest for a long time, but by the time I got the to the ED, his heart was beating again. A young fit heart can withstand a lot. I spent the next few hours with him, water pouring out of his lungs. Every few minutes, disconnecting the ventilator and draining the river from his chest. 100% oxygen, sats stuck in the 60’s. PEEP doesn’t work on river water. We dialysed, got the inotropes right, got him warm. I spoke to the tertiary centre, about ECMO, knowing what they would say, but making them say it anyway. “No. Down too long, too unstable to transfer.”
I sat down with his parents, his young siblings. Again in THAT room. The one with the sofa, the water fountain, the landscape paintings on the wall. Tiny boxes of tissues. Stunned, tearful faces. “Thank you, Doctor. Thank you to all of you.”
I was off, post-call, from 8AM on Sunday. I spent it outdoors, in the sunshine. Away from rooms with no windows, with continuous beeps. Monday, 8AM. Back to the basement. Greeted before I even go into our unit by his mum, dad and siblings. Still there, looking exhausted. “Hi, Doctor.”
Even on Monday, on that first day, I knew which way it was going to go. We’d scanned his brain on admission, to make sure he hadn’t had a haemorrhage or a stroke to cause loss of consciousness in the water. Even then, at a few hours after, it had looked bad. Swollen, damaged. “Loss of grey-white matter differentiation.” Starved of oxygen for so long the brain tissue has broken down, destroying the normal architecture.
But the strength of youthful physiology is incredible. Biology finds a way to survive. His kidney function returned to normal in a couple of days, he came off the vasoconstrictors quickly, even his lungs recovered fast. He was breathing on his own. But then came the twitching. Coarse, erratic jerks of his legs and facial muscles. Not the patterns of muscles that give facial expressions, but isolated little bundles of muscle, on his chin, above the eyebrow, in the cheek. I remember standing at the side of the bed while this went on, explaining to his parents that this was A. Bad. Sign. despite their elation at all the pumps and machines disappearing from his room.
I had been clear with them right from the start, I was worried about his brain. He had been down for a long, long time. Down: medical vernacular so often nothing less than the practical truth. Face down in the water. Down. Before his friends realised he was missing and found him. Before the ambulance crew got there, down the rutted earth track. Before they started CPR. Before they shocked him, repeatedly, in the ambulance while they drove, quick as they dared, to the hospital. Lungs full of river instead of oxygen.
The second scan confirmed the worst. Severe damage, very tight. Because he was so young, I spoke to the tertiary guys again, to their radiologists, to get a second opinion on the scan. “Devastating. Even the initial scan looks bad.”
I knew what I was going to do. I had known from Monday morning to be honest. It was just his brain that was broken now. I remember standing in his room watching. The twitches had become finer. His rapid, shallow breathing. Healthy, well-muscled, a boy already growing into a man. Just out swimming out in the river on a warm summer evening, the kind that go on forever up here, this far north.
I sat down in that room with his family. All of them, on our sofa, below the paintings, and its boxes of tissues. Perched on chairs, crouched down against the wall. I took one of our ICU nurses as I always do – I needed both a witness for what I was going to say, and because nurses and family grow to support one another quickly, sitting in that room together for hour after hour. I knew that both parties had to be there, had a right to be there.
I have their absolute, unbroken attention. They watch me, wide-eyed, as I sit myself down in the middle of them. I take out my phones and put them face down, away from me. “You have my unbroken attention, too,” is the message I’m trying to say. I tell them. “I’m so sorry. His brain is gone. He is breathing on his own, he isn’t dead, but his brain has been destroyed. Too long without oxygen.” In that stoical British way they take the news, quietly. His older sister, only just a woman herself, cries. Silent tears but doesn’t look away.
“I want to ask you something.” His mum, exhausted and drawn, looks directly back at me. “He has the chance to help others,” I say. “His body has recovered well, and his organs have the possibility of saving several lives.” My voice is steady. Inside, I am not. My heart does some origami flip inside my chest, and I wait. His sister answers almost immediately.
“He would want that. We’ve talked about this. We’ve all talked about this. If he could, if he was here, he would want you to do it.” His mum and dad nod, with certainty. “He would. He always wanted to help others. If we can, we would like to do that.”
Another little origami flip. “Thank you,” I say. “Thank you.”
I talk quickly and kindly through practical matters. I warn them that there is paperwork, that the process is not quick, it may take another 24-36 hours before things happen. They nod, quickly. They have made their decision, they need to grieve. I thank them again, and leave them to it.
As I walk back in to the unit everyone gives me a bit of space. I hide behind a coffee. I want to cry but manage to hold it together. He’s only just older than my stepson.
As predicted, these things take time.
The Donor Coordinators arrive and start the matching process, paperwork, further investigations. Things are signed, samples are taken, infusions are started and changed. I walk out of the unit that evening knowing that retrieval will likely happen the next day, all being well. It is still hot outside, and the feel of sunshine on my skin makes me glad to be outside of our sterile lights of basement unit, away from the beeps, and sadness. I am glad to turn my back on it for a few hours. I am grateful that I have the choice.
The next day, it is clear that it has been a busy night for the Donor team. Much has been achieved. As I arrive in the changing room, there are unknown faces asking where the scrubs are. Boxes of supplies brought to ensure that the team has everything that they need close to hand. They are getting set up in the theatre closest to the ICU, and I know that this morning will be the time. His family, his mum and dad, have made a plan to say their goodbyes and leave. They do not want to watch me extubate him, to be there as his heart stops. I give them space. They do not really want or need to speak to me now, they just want their boy.
I cannot give him back.
It reaches time to go. I extubate him in his room, talking to him as I would any other patient, saying reassuring phrases, saying his name. I do not ask one of the nurses to do it. I do not want to ask them to do this. His oxygen requirements had gone up overnight, and he desaturates quickly. Within twenty minutes, his heart has stopped. He has gone. I take him through to theatre, and confirm his identity, number, and that he has been confirmed dead.
I do not stay to watch. I have things to do.
I keep coming back to this family, days, weeks later. This was nowhere near my first or last organ donation, sadly, but this family stays with me. To this young man who in one short moment in a conversation with his sister, said something so fateful that would impact the lives of others. Said in earnest, an abstract concept that could not have been fully realised or understood. “I would want to donate my organs.”
It didn’t need to be fully grasped, to have seen people dying of liver failure or experienced a close relative suffer, living the life of dialysis. That basic humanity, to care for others, to voice the wish that if he could, he would want to help.
Such a powerful, resonant sentence, that it would be remembered and acted upon in the most profound way. He could not have known. He will never know. That little conversation saved lives, alleviated much suffering, and I want so much to be able to thank him. He would have been a great man, I think. No—he was a great man.
In other ways too, this family comes back and lives with me. I cannot help but think of them, holding their breath and gazing at me, knowing what I’m going to say, knowing that I’m going to definitively bring their world shattering down around them. To hear me say the words, “He is going to die. We cannot save him.” To absorb that, and then have the strength and selflessness to think of others at the worst moment of their lives. It is extraordinary, and beautiful. I am so humbled by that. Every time it happens, I am amazed and humbled anew.
I will end this here. I don’t need to tell you about the times that I am out running, long, long distances, when I am tired, and it hurts, and I think of this family and how they had the depth to be strong when they had no choice, and I cry quiet tears, alone in the hills. I can run another couple of miles, can’t I? If they can do that, I can do this. I don’t need to tell you about how I won’t go near that part of the river. I don’t need to tell you his name, the name I can never forget.
You will have your own stories like mine, that never seem to leave you, from medicine, this game of ghosts we play.
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It was an orange summer evening; a warm breeze was blowing outside. I was inside, working, and the little girl I was called to see was barely clinging to life.
Her head was swollen, her body bruised all over. Her pupils were so big that her irises were the barest ring of brown around the empty black. I swallowed hard as I reviewed the CT scan. Her brain was a uniform grey, interrupted only by flecks of bright white in the depths of the brainstem. Duret haemorrhages.
Only hours earlier, the family of five were traveling out of town on a holiday. An oncoming vehicle swerved onto the wrong side of the road. Four members of the family sustained minor cuts and bruises. Cruelly, the brunt of the impact was borne by the 6-year-old girl.
There was nothing we could do.
The distraught mother had refused to leave the girl’s bedside. She already knew. “Always listen to the mother” I was taught in my paediatric rotations. The father and the two siblings came into the meeting room with us. It was time to tell the family. Their eyes showed no sign of the fear I was certain they must be feeling at that moment. I breathed a sigh of relief mixed with shame when the ED physician volunteered to do the talking.
Over a decade later and I remember most how they faced the fact of their daughter’s imminent death with a calm dignity. Their gentle acceptance humbled me then. It humbles me still.
My colleagues got up to leave. I had somehow held back the tears for over an hour now. A few glanced as I lurched towards the sink. I was not sure if I was going to vomit or cry.
I was alone, my vision blurred by tears. I’m not sure how much time passed, but eventually I washed and dried my face and left the room.
Back to work. There were more patients to be seen.
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I know there must have been one. There must have been a paediatric cardiac arrest call put out, otherwise I wouldn’t have attended the ED. I don’t remember it though. I was the ICU registrar on call, and I was in the ED waiting to receive you.
I don’t remember checking my equipment. I must have done, as I had it all to hand.
My first memory of you is your limp little body being hurriedly lifted onto the resuscitation trolley by your dad’s strong, determined, speedy arms.
You were covered in a rash. A viral exanthem, I thought.
You weren’t breathing. You had no pulse. We started CPR. I intubated you with one swift movement. We started ventilating you, and your chest rose, and CO2 was detected. Sigh of relief. Good.
Children have respiratory arrests most of the time right? Restoring ventilation should make you live again.
Your pulse didn’t come back. The ECG was a flat line.
Multiple thoughts now. Causes of asystole in a young child. Hs and Ts. Running through; no signs. Adrenaline boluses. No response. External pacing. No response.
Oh God. Please, God, no.
ECMO. Please can we put you on ECMO?
The nearest centre is an hour away. 30 miles as the crow flies.
No no no no no.
If you lived 30 miles south of here you might have–might have had–a chance at living.
The pain that shoots through my heart in that one moment is excruciating. Anger. Fear. A horrendous sense of a giant universal wrong.
I don’t talk to anyone about ECMO. I can’t. The team leader isn’t thinking it. No one else is. I just…. I can’t do it. It hurts too much.
I hope someone else would bring it up. I would go with you in the ambulance. A mad dash to try to make you live.
But no one does.
We carry on CPR for 40 minutes. I carry on ventilating you; a shell of a man, watching myself holding back tears of frustration at the inevitable situation that is to come.
You’ve been down for an hour. The team leader, a consultant paediatrician says “stop”.
Your father utters a painful, weak “No, no”…
Your parents crumple around your little, rash-covered body.
I excuse myself from Resus. I tell myself I’m giving the parents a chance to grieve. But it is I, it is I who needs to grieve.
I collapse. Shaking. The tears flow, stinging my cheeks as they fall. I weep for you, for your parents, for the sun you will no longer see, the warmth you will no longer feel.
You had a beautiful 18 months on this earth that were cut tragically short.
I am so sorry.
I learn ECMO now. You sit on my shoulders as I study. Your little hands widen as I understand what it can–and what it can’t do.
‘Your eyes are windows to the soul,’ I was thinking as I shone a light into your green eyes. They looked wide & innocent. The bruising around them, almost blasphemous.
I looked at you – 7 years old, coming back with mum after visiting grandparents. There was a car crash. Mum was fine but you – normally cheerful & bubbly – were crying, and then had a seizure, followed by a respiratory arrest.
Your eyes did not react to light, or to touching with a piece of gauze. No response to cold water in the ears, or to disconnecting from a ventilator.
‘The first set of tests show Joshua is brain stem dead. We will do a confirmatory second set shortly,’ I told your mum. She cried.
We contacted the organ donation team, and spoke to your mum who said she would like to think someone’s life had been saved using your organs.
I took you to theatre – your mum walked to the door with me. I promised her I’d look after you and stay with you all the time – I lied.
I connected you to the anaesthetic machine & theatre monitoring. Your skin was still pink and warm. But the operating theatre was a hub of activity. There were 3 surgical teams, organ donation coordinators, big bags of equipment, transfer bags, phones, paperwork. I felt lonely in the middle for you. The most important person in the room – you – were almost being ignored.
The surgery started. We alternated between the thoracic and the liver teams to dissect around your organs (your little body wasn’t big enough for both teams to fit around you.) The kidney team would work on you after the heart, lungs and liver had been taken.
I lied to your mum. Just before the surgeon cut into your skin – and warm blood flowed – I had blurred vision and had to step out of theatre for a second. I couldn’t talk, and I’d obviously got some grit in my eyes.
But I knew I needed to return and look after you – I’d promised.
Each step felt like a desecration of the human body – cutting through skin, bone, clamping blood vessels, and finally stopping ventilation… suddenly, everyone was gone and in theatre, there was the anaesthetic assistant, me and the scrub nurse. We talked about you for a minute and then started cleaning you up.
I went to talk to your mum… she was very strong.
We found later that you’d helped many children – the heart and lungs went to someone with CF, the liver was shared between two children, and the kidneys helped two come off dialysis.
Your eyes gave the gift of sight to someone… and (even though I know the cornea is colourless) anytime I see someone with green eyes, I think ‘I know those eyes- I shone a light in them’