Living Inside the Story
It was my own mother, not some fictional character out of a book or television series, lying, hooked up to machines, in the hospital’s intensive care unit …
Last week The Guardian reported that ‘Organ donations from hundreds of registered donors have been blocked over the past five years.
The data, which indicates that relatives blocked transplants in 547 cases since 2010, was released by NHS Blood and Transplant (NHSBT) to draw attention to the fact that family refusals mean people either wait longer for a transplant or die while on the list.
It estimated that 1,200 people missed out on a potentially life-saving transplant as a result of the refusals, which accounted for one in seven donations over the period.’
If we read an article in a newspaper saying that there had been a massive explosion, that 1,200 people had been killed, we would be appalled. But that’s what we’re talking about here – 1,200 people died because they missed out on a potentially life-saving transplant.
It was while I was working as Script Consultant on ‘Casualty’ that we decided to focus an episode on organ donation, specifically looking at it from the donor and the donor’s family point of view. Plus the experiences of the doctors and nurses trying to get a family to agree to donation. Sam Snape researched and wrote the script – ‘Living Memories’.
Less than six months later, I found myself sitting beside my mother, in the back of an ambulance, blue lights flashing, siren blaring, as it weaved its way through the traffic towards the nearest hospital. When the ambulance screamed to a halt, the back doors opened and I found myself staring into the faces of the A & E department’s crash team, what had been TV fiction became a living reality.
Two hours later, my mother was admitted to the hospital’s intensive care unit with a suspected brain haemorrhage. One hour later the diagnosis was confirmed. Tests confirmed brain death. My mother, or rather the shell of my mother, was being kept alive by machines.
I knew, because of having worked on that episode of ‘Casualty’, that my mother could become a donor. I was expecting one of the doctors or nurses to come into the family room, where I was sitting with my father, to ask that question. Have you ever considered, would you consider, your wife, your mother, as a donor? But the question was never asked.
Eventually I followed one of the doctors out of the room, into the corridor. The look of relief on his face when I said, please, do ask, you may well find the answer is yes, was indescribable. So the question was asked and we talked, my father and I, sitting together in the intensive care unit’s family room. He was at first appalled. But then we began to talk about his wife, my mother, what she would have wanted, if she had been there sitting with us, and his attitude softened. She’d always been very practical, very down to earth, and she had always helped others. Her very sudden and completely unexpected death was enough of a tragedy without the opportunity of bringing help, even life, to others being wasted. We called the doctor back into the room. We had made our decision.
To have to be asked by a doctor, immediately after such a tragedy, to make such a decision is very, very difficult. For some people impossible. And I can completely understand why the medical and nursing profession find it so difficult. Perhaps, just sometimes, rather inflict more suffering, choose to avoid it. But that discussion, that opportunity we were given, through the death of my mother to bring hope to others, helped us, as a family, get through to the other side.
Because in that terrible time of darkness, where the chance of ever being happy ever again seemed so remote as to be impossible, it did provide just a flicker of light – of hope for some sort of future. And as the days, weeks and then the months went by, that flicker of light grew stronger and stronger.
So what to do? How can we stop hundreds, if not thousands, more people from needlessly dying? In the long term, the most effective way through would be the introduction of an opt-out organ donation system as already adopted by Wales and being considered in Scotland. Meanwhile we will have to continue to make do with an opt-in register. But the wishes of the individuals who signed up to that register, to donate their organs, must be honoured by their families and loved ones.
The place for such discussion, to donate or not to donate, mustn’t be restricted to inside the grim four walls of a hospital’s family room. If it is, it will only fail. It has to be out there, openly in society, on television, in magazines, papers, on the radio, on television, in fiction and non-fiction, and, most importantly, on social media.
The only way to stop hundreds more people from needlessly dying, is for all of us to start talking. We need, as Sharon Brennan wrote in The Guardian last week, ‘to openly discuss donation without feeling squeamish and upset, then perhaps we would feel less distraught if faced with a decision about organ donation, less likely to dissent and more able as a society to feel comfortable enforcing the law around individual consent.’
Eighteen months after my mother’s death, we received an invitation, as a family, to attend a service at Southwark Cathedral. All the people in the congregation were in some way connected to organ donation – whether as donors, the family of donors, organ recipients and their families, or medical and nursing staff working in the field. We were all there to celebrate life. Because, in the giving, and in the receiving, life, rather than death, had won.
To sign the organ donor register go to www.organdonation.nhs.uk