‘I didn’t want my sister to die for nothing. It just seemed such a waste’
As organ donation laws are set to change next Spring, Harry de Quetteville meets those helping to navigate the process
Lloyd Dalton-brown can still remember the moment he saw his sister Jane, then 29, in hospital after her accident. “When I went in to the hospital she looked fine,” he recalls with startling clarity, nearly 20 years on. “Her cheeks were rosy, she was breathing.” But looks were terribly deceiving.
The rise and fall of her chest was maintained only by machine. Jane had suffered fatal head injuries after being hit by a lorry. “When the consultant showed me the scan of her brainstem,” says Lloyd, “I understood.”
What happened next changed his life – and those of five others. “The consultant asked me about donating her organs,” says Lloyd, now 67.
But, like the vast majority of people, he had never discussed the possibility of such a medical catastrophe with Jane, who had yet to reach her 30th birthday. “I agonised about it,” he says. “I wobbled. And you don’t have long to make your decision. Because the organs don’t last long.”
Eventually he gave consent for her organs to be donated. “I didn’t want her to die for nothing. It just seemed such a waste.”
Jane’s heart, lungs, and kidneys went to others. Her liver went to a girl so desperately ill that an appeal for help was broadcast on the radio. Even so, Lloyd couldn’t help wondering if he’d done the right thing: “I did a lot of soul searching,” he remembers.
It was only later, when he managed to speak to many of Jane’s friends, who reassured him, that he could set his mind at ease.
Now, the law in England is
‘I’ve never met a family who regret the decision to donate an organ’
changing in a way that could see many more bereaved relatives faced with similar agonies to Lloyd. For next Spring, organ donation will move to an opt-out basis, where consent for donation is assumed, unless someone has noted that they do not wish it.
It is a watershed moment. After all today, which marks the start of Organ Donation Week, only 24.9million people have recorded their decision to be an organ donor on the Organ Donor Register. That is 38 per cent of the population.
In 12 months’ time, however, all of us bar those who register an objection will in effect become card-carrying donors. Of course, that will not be the end of the matter. Because then, as now, bereaved families will still have the ultimate say. And, as Lloyd says, “families can be divided over the issue”. He should know – his mother is against donation; his children are in favour. His wife, as next of kin, will make the call, should the worst happen.
In recent years, families in the UK have stepped in to prevent donations in about 40 per cent of suitable cases. So while next year’s law change is expected to result in a many more potential donors, it will be for nothing unless families give are prepared to give their approval.
That is where SNODS – Specialist Nurse for Organ Donation – come in. A cadre of 300 experienced nurses, usually drawn from intensive care and emergency units, they are given six months of training to prepare for the uniquely sensitive task of caring for and supporting a donor’s family.
“You can’t imagine what people are going through at that time,” says SNOD Rachel Rowson. “It’s the darkest day of their lives.” That’s because the process of organ donation requires someone to die on a ventilator, and that, as Rowson says delicately, “usually means donors have suffered a traumatic event: a fall,
a traffic accident, some kind of injury to the brain like a stroke. It’s probably happened very quickly.”
Most families, then, have said goodbye to the potential donor at breakfast, fully expecting to see them again for supper. Instead they are confronted with tragedy, and, on top of that, asked to consent to organ donation too. “Understandably some say ‘I just can’t make that decision,’” says Rowson. “But unfortunately saying that is also saying ‘no’. Time isn’t on our side. We only have one time to ask, one time to get it right.”
She describes a process of almost unbearable delicacy in which, she is quick to say, there is absolutely no pressure placed upon the family one way or the other.
Rather, it is about helping them to process what has happened fast enough to ensure that, should they agree, the organs are still in a good enough condition.
“Getting them to the point of accepting that their loved one is going to die is the first step,” she explains. “It is very sensitive and needs to be done in the right way.”
Often the SNODS find it is not donation itself that is the issue, but that grieving families are overwhelmed by mundane tasks. “We find they are worrying that the kids need collecting from school,” says Claire Williment, who is ensuring that the several hundred staff on the NHS’ nationwide Blood and Transplant Team are up to speed with the forthcoming law change. “But we can sort it all. That’s the unseen side.”
If families then agree to donate, a plan swings into action, managed from an operations base in Bristol.
A surgical team from the National Organ Retrieval Service stands ready around the clock, 365 days a year, to operate. The organs are then passed to couriers to be dispatched to up to nine recipients around the country.
“It’s an amazing logistics feat,” says Williment. “If we have a heart, the recipient will be being prepped at the same time the organ is being retrieved from the donor.”
What happens next is then up to people like Steve Wigmore, professor of transplantation surgery in Edinburgh, who speaks of how remarkable the process is.
“When you see someone who was
close to death now full of life, back at work, it does feel amazing.” Who benefits from those transplants, he says, is down to a computerised weighting system, which is “quite complicated,” with everything from outcomes to geography taken into account. But one thing is sure, Wigmore adds: “Children take priority.”
Long delays remain – three years for a heart transplant, more than two for a kidney. Some 6,000 people are on the waiting list. But it was 8,000 only a few years ago. That, says Wigmore, is down to an organ donation task force which, in 2006, studied and improved the whole pathway of donation, and put in place greater family support, helping boost public approval of donation (it now stands at 80 per cent).
The greatest change has occurred in Wales: as recently as 2015, almost half of families there refused donation. Today, that figure is just a quarter, the lowest in the UK and described by Williment as “worldleading”.
The difference, she says, has been Wales’ own opt-out law, in place for four years. “It got the nation talking,” she says. And talking, as Lloyd Dalton-brown knows, is the crucial thing. “You have to have the discussion before anything happens.”
The benefits, he says, are inestimable. “My sister died and helped five other people. Jane was able to do something to save others.” In the NHS, Rawson says she has “never met a family who say they regret it. But we have had some families who have regretted the decision to say no”.
Minimum estimates suggest that the law change will see several hundred extra donors and around seven to 800 more transplant operations in England each year: “For patients with organ failure there’s never been a better time,” says Wigmore.
And time is crucial, no more so than on the “super urgent list” in the Bristol hub. “It is very, very powerful,” Williment says. “When you see a name has gone from that list in the afternoon because they’ve had the transplant – nothing makes you happier. But nothing makes me sadder than when that name is gone because they’ve died waiting.”
‘When you see someone who was close to death full of life, it feels amazing’