As the stream of policy discussions and floated ideas for the NHS continue to emerge, I and my family have had unfortunate cause to realise just how much of what the health service does is impossible to "value". It is even more prescient given that the hospital in question, Charing Cross, is under threat of closure. So I relate our story in order to perhaps recalibrate the thinking of many...
It was a late Saturday afternoon when the hospital called me. My brother Matteo, the voice said, was in intensive care after a bleed on his brain and his wife, Nicky, had asked them to contact me. "He has had a very significant haemorrhage , Mr Volpe. It's very grave and we can only offer palliative care," she said, with a professional sweetness I still find remarkable. She had done this before.
Having rushed to Charing Cross hospital, just two hundred yards from my house, I felt in familiar surroundings because Matteo had been in their Intensive Care Unit twice within the past four years; an aneurism and, later, septicaemia. But whilst he had reason to thank his lucky stars for surviving both, this time it felt different. I met with a stern but gentle consultant who showed me the CT scan they had done of Matt's head. Even I could tell that the bloom of brightness that permeated most of the left half of his brain equated to a colossal event that, if he survived, would render him seriously disabled at best. "Have you ever seen anybody live through something this big?" I asked. After a long, thoughtful silence, she replied, "Yes", but she was offering no solace, just stating a fact and her pause was designed to test my intuition. My intuition passed, telling me everything I needed to know.
If A&E is the "poor bloody infantry" then ICU is where the SAS reside. In a dazzlingly equipped ward of just four patients, Matteo, in a coma, was tended constantly by a nurse in scrubs, testing, examining, watching and entering figures onto a metre wide chart of bewildering complexity. Matteo was taking his own breaths but a ventilator was helping him. A good sign? Automated syringes pumped constant streams of powerful sedatives into him to keep him asleep; their withdrawal would be the first big test for him. I was a constant source of questions, wanting to understand every drug, every machine, every bright, flashing and multicoloured reading on the screens. I would look at the charts, trying to work out the meaning of the vast matrix of measurements, vital signs, blood and chemical analysis. And not once did a professional in that ward prevaricate, nor did they lose patience or turn their eyes heavenwards. In the past, I have always found doctors and nurses to be reluctant to engage in anything more than rudimentary, patronising chitchat. This time they indulged, offered more than was asked for and I knew, deep down, that they were sorry for us, pitying us, perhaps knew that this was all a short road to the inevitable.
Matteo had gotten through the first 24 hours. He was taken off the sedative for the first time on Monday but a while later it was reintroduced as he showed no sign of awakening and his blood pressure began to fluctuate dangerously. He had reacted to a pinch, a natural reflex but still a small sign of hope. My conversations with the doctors took on a slowly increasing clinical quality because I wanted to understand and I had to report developments to my brothers in Scotland and the USA. I needed information and I wanted to know outcomes. I was in and out of the ward several times daily and I got to know the nurses and doctors. By Tuesday they tried to withdraw sedation again; this time he lasted an hour before destabilising. Still the doctors indulged me, still they answered my questions. By now I was discussing the options with my brothers by email or Skype. Along with Nicky, we had to make decisions on resuscitation, on what criteria we would base a decision to withdraw Matt's life support; a sense of conscious thought being present, even if seriously disabled? Nicky said cremation had always been Matt's choice and I found myself thinking about music for his funeral. I called a soprano friend to ask if she would perform.
At midnight on Wednesday night a doctor I had come to know well telephoned me. Since Saturday I had been waiting for a call to say that Matteo had given up his fight but this wasn't quite as dramatic - yet it was the first, painful step. Matt had "blown a pupil" and his blood pressure had crashed. This was the first sign that the bleed was affecting his brain stem, from which there was no return. I sent emails to my brothers. One wrote back, "Go and sit with him, talk to him, tell him we love him, that it is going to be OK, that we are all with him and not to be scared."
And so I did. I whispered in his ear, in the darkened ward, accompanied by a symphony of bleeps and quiet alarms and sat with him all through the night, sustained by tea, made for me by his nurse. At 7am, I returned home and Matteo had made it through the night.
Later at midday of Thursday I returned to the ward to be told that his other pupil had blown and that there really was no hope. The neurological teams had assessed him again too and their view was the same. So we retired to a private room with two doctors and the head of nursing, a new face. Nicky and I fired questions and the doctors deflected any that required a definitive timescale or which might offer hope. They handled it beautifully. The head of nursing was also the transplant coordinator for the hospital and he asked if we would consider donating Matteo's kidneys. A burst of something resembling joy filled me; yes, that would be something wonderful for Matteo. It would take twelve hours to identify potential recipients, to line up the processes and they explained how it worked, how Matt would be taken to theatre, how in the anaesthetic room next door his support would be withdrawn. After death, five minutes would be allowed to elapse before being taken to theatre to harvest the organs. The twelve hour timescale meant 2am for this to happen but Nicky was adamant he would not die during the night because since his aneurism operation he had become afraid of the dark. Graciously they all agreed this would be fine and we bartered about whether it should be 8am or 9am. We went for 9am.
I returned to the ward and saw his nurse attaching a bottle of something brown and milky to one of the tubes leading to Matt's nose. It was his feed and I at first wondered what the point was, given the conversation I had a few moments before. And then I understood.
Matt needed to hold on now so those kidneys could be given to someone. Some family members visited that evening to say goodbye to Matteo and I went home to try to sleep, my appointment with my brother's death made. Sleep didn't come easily but when it arrived, it bludgeoned me, the previous night's vigil having taken a toll. The meeting with Nicky at 8.30am for coffee was as normal and as benign as any ordinary day but played out with a surreal soundtrack, a numbness and clinical monotone. We went to Matt's bedside to be told the two potential recipients had been tested but that tissue typing had revealed there could not be any organ donation. They were sorry and we were crushed. We resolved that it was "not to be" and proceeded to ask more questions about the mechanics of Matteo's death.
We were asked if we would like to be with him at the moment of passing but after some thought decided against it. Will he suffer? No. He was requiring ever increasing levels of support and it would be swift. Would they give him some morphine just in case? "Yes", said the doctor, "I promise, I will do it myself." I stroked Matt's head and said "See you later, Matt."
And then we went for a coffee. After twenty minutes I telephoned the ward and asked if Matteo had died. "Yes, he passed and we are giving last offices, you can come back."
And so we returned to be with Matt for the last time, only now with no tubes, sallow of cheek, quiet and the machines weren't purring and chattering, their screens dark. He went very quickly, they said, within five minutes, peacefully, with no struggle. He just stopped living. I can't yet articulate what I felt on seeing him then, I simply don't have the words but it is in my mind's eye constantly still.
With our NHS under threat, it takes an episode like this to realise what we have. Those doctors and nurses fought for Matt, even though they held little hope of a positive outcome. The treatment would have cost a great deal of money and during one of my many conversations with doctors, a consultant had said she had only seen one patient with a bleed this extensive leave the ICU alive. With those odds, how many bean counters might balk at the efforts made to improve on that solitary statistic?
The medical team gave him a dignity it is hard to fathom and harder to describe, unless you have seen it given. In all truth, Matt left us on that first Saturday but had he simply died then, I would not have been there to walk him to his end, to see him living and fighting and being given that chance. And we were, I suppose, more gently introduced to the notion of his passing, spared the suddenness and shock. Hospitals are there to save lives but they can also help people like Matt to their end whilst performing heroically to try to prevent it. The great monument to our civilised values that the NHS represents is perhaps even more evident in their "failures" and their vainglorious attempts than in their successes. And that is a thing of great distinction that cannot be qualified by cost nor visualised in profit terms.
We asked those mourning at his funeral that donations should be made to the Friends of Charing Cross. They had performed miracles twice before for Matt but in the process of not doing it a third time, they - and society - had possibly made their greatest gift to him.