BETWEEN LIFE AND DEATH IN INTENSIVE CARE

The patients with only a 1% chance of survival? They’re the reason I get out of bed in the morning, says Aoife Abbey, now a specialist registrar in intensive care at University Hospital Coventry and Warwickshire

Despite our attempts at seeming otherwise, doctors are vulnerable to hope. The difference is that usually we don’t visibly share it. When you stand beside your relative, your hand resting on theirs, and tell yourself, “I hope they pull through”, I hope that too. Often I am simply hoping that in another room.

Pat was a husband and a father of grown-up children. He was a bricklayer who’d had an accident at work, falling from scaffolding and ending up with a complex, traumatic brain injury. We admitted him to the intensive care unit, and for more than 40 days he did not get any better; in fact, he got worse. Slowly, he became somebody that we struggled to ventilate, could not wean off sedation and could not “wake up”. Over the course of those weeks, Pat’s personhood appeared to sink down inside him, until eventually it felt as if nobody on the team could picture him transitioning from our care and being discharged home.

We gathered Pat’s family and told them there was a significant chance that we would not be able to wean him from the support of intensive care. We told them we regretted it immensely, but as more time passed, things seemed less salvageable. The next morning I walked past Pat’s bay, where his wife, Linda, stood holding her husband’s hand. She gestured for me to come over. “I know,” she began, “I know what was discussed yesterday, but he’s different today.” Much of the time, in this situation, the patient is not markedly changed at all, and the differences that people feel they can see cannot be ascribed to any definitive prognostic value. This was different. Pat, although not sedated, lay there as I had always known him to; he didn’t move, and the ventilator pushed air in and out of his tracheostomy, but his eyes were open. They were tracking his wife and his daughter. Flicking between them, as if screaming: “I am here.” He was there. “Don’t you think he’s different?” Linda prompted me again, nervously.

She was asking me because I was a doctor, and she wanted to know what it meant. I considered my options and settled on an answer: “I have never seen his eyes open like that, no.” It was an ineffectual agreement, a statement from someone sitting on the fence. When I relay the details of what I have just seen to the other registrar, I am buoyant. I am hopeful, I can feel it welling up inside me. The vision of those quietly screaming eyes. I can feel the rush of pleasure from knowing that this is why

intensive care exists, and maybe we can help. I hope, I hope, I hope.

But to expose my own human tendency to hope at this stage would be to see it magnified tenfold in Linda’s eyes. I know my new-found optimism risks doing her harm, and I know the rule: Primum non nocere (“First, do no harm”). So when I stand with Linda, I push my hope down. I wait for more evidence and think perhaps I may share it tomorrow. I will share my hope when I have something more tangible than hope to offer her.

Two weeks later, Pat was sitting on the edge of the bed. He could manage without a ventilator and he liked to listen to Sinatra. Two weeks later still, Pat was sitting in a large, high armchair used for patients who are just beginning to sit out in intensive care. Sitting in this enormous chair, Pat dominated his bay. He slowly looked around, seemingly surveying his new kingdom – this strange place that he had unexpectedly come to reside in – and I remember telling him that he looked like a king on a throne. Over the course of those weeks, every single one of Pat’s seemingly small achievements made me so

happy: our King of Hope.

It is no secret that doctors aren’t always right when we give a prognosis, but when we’re wrong I believe we are as happy as anybody else. Most intensivecare doctors I meet tell me that they would rather give realistic odds, even if they are pessimistic, and risk that patient being in the minority who “make it”, than be responsible for somebody’s false hope. I find myself annoyed when I hear stories presented in the media as doctors pessimistically trying to dash hopes – the headlines read: “Patient defies doctors who gave her a 10% chance of survival.” It is not that we did not want you to hope; we just had an obligation to give you what we saw as the facts. If I tell you there is a 1% chance that your mother will make it out of hospital and then she makes it, I will always be pleased that she was among the 1%. The 1% makes me get out of bed in the morning. The 1% is why I can do this job.

There was a woman with pancreatitis. She had been with us for a few days when one of the nurses came to me, worried that her family did not have a realistic idea of what her chances of survival were. Since admission, this patient had progressively deteriorated, developing multiple other organ failures. So when the time came, the nurse and I sat down with the family. I rehashed to her grown-up children the dire diagnosis of severe pancreatitis; I took

“Pat lay there; he didn’t move; the ventilator pushed air in and out. But his eyes were open, tracking his wife and his daughter”

them through their mother’s failure to improve; and, as was my intention, I made it very clear that the chances of her dying in the next few days were much higher than the chances of her surviving. Her daughter, Alex, started to sob and asked with a mixture of frustration and anger: “So should I hope at all? What is the point in all of this?”

This I understood to mean the ventilator, the renal filtration machine, the recurrent courses of antibiotics for superimposed infections, the drugs to keep the patient’s blood pressure stable. The central venous lines we had put in her neck and groin. The waiting – also the waiting. It wasn’t that I wanted Alex or her brothers to cry, but I had embarked on that conversation to give them a realistic view of their mother’s position. They clearly now grasped that the situation was dire, and so I had achieved what I had set out to. Mission accomplished?

For me, the often inconvenient reality is that unless I have entered a room to tell a person that their relative is definitively, absolutely dying or dead, it would never be within my remit to bid them not to hope. So, my hands are tied. I answered Alex that of course I wasn’t telling her not to hope at all. I replied that if I didn’t think there was any chance at all, then we wouldn’t continue with this invasive treatment. When we went back to their mum’s bedside, Alex gulped back her sob and wiped her face, roughly, with the sleeve of her jumper. Somewhere inside, hope feasted on the crumb I had dropped. She brightened and said, with an air of determination: “She can do it.” Then she sat back down, exactly where she had been before our conversation had happened. Alex’s mum died two days later.

Within the world of quantum mechanics there is a theory called the Copenhagen interpretation. In very basic terms, this hypothesis states that an object in any sort of physical system can exist in all of its possible forms until observation forces it into a single state. The physicist Erwin Schrödinger claimed that the Copenhagen interpretation was flawed. To illustrate why, he came up with a thought experiment: a cat is placed inside a sealed box with a device that has a precisely 50% chance of killing the cat within an hour. At the end of the hour, what is the state of the cat? Without opening the box, you could not know that the cat was alive, but neither could you say that it was dead. So was it both? Schrödinger’s cat became famous: the cat that was both dead and alive. Sometimes I think that intensive care is home to many such cats.

I am reminded of this when I look at my patient. She’s about my age. I place my hand on her wrist and it is warm, but there is no pulse. The arterial line confirms this because she does not have the waveform that would tell me blood is being pumped in a pulsatile manner from her heart, through her arteries. I place my stethoscope on her chest and I cannot hear clear heart sounds. Her chest moves up and down with the ventilator and there are large cannulas, which look more like pipes, running out of her body, taking blood down into a machine, feeding it through an oxygenator and pumping it continuously back into her body.

Her own heart doesn’t currently function in any true sense of the word. It had stopped in earnest some days ago, so you could say that she had died, but a team pushed up and down on her chest until the machine was ready to use. And you could say that resuscitation failed because her heart remained in a non-perfusing rhythm, but then she was in the right place, so to speak, and the team had timely access to this machine and some cardiac pacing wires. So, she had a chance. Now her blood is being pushed around her body by the pump in the machine next to me. She is deeply sedated. She is galaxies – light years – away. I turn to the consultant and ask: “So we just wait?” “Yes, we wait to see if her heart will beat functionally again.”

Schrödinger’s point was that his cat couldn’t possibly be both dead and alive. He was illustrating that the Copenhagen interpretation couldn’t hold for large organisms, because how could a cat simultaneously be both dead and alive? Yet I stare now at Schrödinger’s patient: dead or alive? I know that if I stood at the bedside of a hundred patients like her, I would never truly be able to understand their status: who are they in that moment, and what form do they take? I default to what I see my patient’s relatives default to: time will tell, there is nothing left to do, but hope that the coin falls the right way up. Hope, because I don’t know what else to fill that space with, and it is as yet too early to consider making any other decisions.

Four days later, when I look up at the cardiac monitor, it is now tracing an intrinsic heart rate of 100 beats per minute. Familiar, regular; sinus rhythm, a heartbeat that is her own. I place my stethoscope on to her chest, for no other reason than feeling obliged to do her the service of acknowledging that there is something there inside her. It is a ritual; to show her that respect, I listen. I hear the familiar sound of heart valves opening and closing: lub-dub, lub-dub, lub-dub. I am, I am, I am. Alive.

I had stood beside her and asked myself: “What are the chances?” I told myself: “Very slim.” We decide to support this wisp of a chance. So she is passed from the emergency department team to theatres. She makes her way through the hands of surgeons and anaesthetists, nurses, healthcare assistants, radiographers, porters; many more hands to come; and now mine. I do my job and, in the interim, having nothing else to counteract the blind uncertainty, I hope. I hope that she will make it, and I hope that she will be OK with what we did to get her to that point.

Her family ask how things are looking. My face is serious and I tell them what I can be sure of: that we have had a positive sign, but that the bigger picture remains very similar. That she is very sick and that, as we discussed before, there is a significant chance of underlying brain damage or that what we are doing will not work. But we are doing the best we can. They hope. I hope. Doing the best we can.

Three weeks later, this patient is not only biologically alive, she is resoundingly alive. She has intact brain function and no further need for other organ support. On the day when she is to be discharged to the ward, I wish her luck. As these words come out of my mouth, I can feel something that doesn’t happen often. I can feel a warm heat rising inside my throat and up into my cheeks. I can feel the hint of tears, and I know exactly what this is – because I am the sort of person who cries at happy endings. I don’t cry, nor do I want to, so I keep it short. I say, “Goodbye, best of luck”, and I smile. I want that smile to say something, for it to say: “You are significant to me.”

She says: “Thank everyone for looking after me.” “Of course, that is what we are here for,” I reply. And as I shut the door, I consider that she has decades of life left ahead of her. I have no idea what her future holds. But I hope she gets to enjoy it.

Extracted from Seven Signs of Life by Aoife Abbey, published by Vintage at £12.99. Copyright © Aoife Abbey 2019. To buy from The Week bookshop for £10.99, call 020-3176 3835.

“Alex started to sob and asked with a mixture of frustration and anger, ‘So should I hope at all? What is the point in all of this?’”