How tragedies can be turned into fresh hope

Published on Monday 10 August 2009 20:44

WHEN asked if they support the principle of transplantation, about 95 per cent of those questioned answer yes. Yet when relatives are given the devastating news that a loved one has died, only 61 per cent agree to donate their organs.

This "missing" 34 per cent troubles Luke Devey, a surgeon at Edinburgh Royal Infirmary: "It is a real tragedy people are dying on the transplant waiting list when good organs are going to waste," he says.

Luke is a man with a mission – to change public perceptions by humanising the face of the transplant service.

"Transplantation has developed from a highly innovative procedure to routine clinical practice – yet many stories written about the service look at the 'freakish' end – controversial subjects like face transplants, paying for organs and so on," he says.

"One of the issues that limits transplantation is a lack of trust. People read about controversial aspects and miss the good we do in our day-to-day work. This diverts attention and contributes to making donation rates poorer than they might be."

An audit of potential donors threw up the 61 per cent figure. It means 39 per cent of families who are told a loved one is brain-stem dead, but has a beating heart, refuse to donate their organs.

The statistic underpins much of Luke's work as chairman of the public engagement committee of the British Transplantation Society (BTS). As part of an overall effort to humanise the service and drive up donation rates, he has developed a "Transplant People" section on the BTS website.

The staff of the transplant service – whose stories are told on the site – are crucial: "We want the public to see we have many committed, hard-working, likeable and normal human beings in the BTS," Luke explains. "Transplant surgeons might seem a bit remote, but people identify with other members of the transplant community – like Davie Roy, who drives the van up and down the motorway, taking organs to different centres, who is incredibly committed and works really long hours.

"Then there are people working in the call centre co-ordinating the organs, sorting the logistics – an offer in Newcastle matched with a recipient in Glasgow, or wherever. When people see the transplant service in the round like that, hopefully they start to see it as something real."

There are, of course, also the stories of organ donors and recipients, often involving heartbreaking but very real human lives – a wife who has to decide whether to give a kidney to her husband (whose family all have renal failure), or whether to save it in case the condition is passed on to her children. Or the Perthshire farmer who decided at 60 to give a kidney to a stranger.

"Transplantation is the ultimate act of solidarity with a fellow human being – out of a tragedy, you can save someone else's life," says Luke. "We want to put the focus on life, rather than death. We want to talk about straightforward transplantation, which saves lives in a really impressive way. One thing is to tell the human stories, to look at the diversity of people."

He is keen to get across transplantation's life-giving properties. This year, to the end of July, Edinburgh transplanted 28 kidneys from deceased donors and 14 from living donors, plus seven pancreases and one liver.

On average, organ donation adds 33 years to a recipient's life; if a heart and lungs are given, this rises to more than 50 years.

"That's a pretty incredible statistic," Luke says. "Through one operation, you have saved almost one human lifetime. To qualify for a liver transplant you must have a life expectancy of less than a year – and the average survival afterwards is 22 years."

Yet what of that 39 per cent of families who still say no? Why do they refuse when approached by an intensive care doctor or donor co-ordinator?

Not, he says, because of insensitivity on the service's part: "The co-ordinators – usually from a nursing background – have one of the hardest jobs in the world. It is difficult to talk to someone in that situation, when a relative has died, but these are amazing, passionate, brilliant people, sensitive to the needs and feelings of each family.

"If they were to say, 'If you donate, Joe Bloggs lives – and if you don't, he dies', that is a coercive conversation. The aim is to emphasise the good that can be done – if someone is losing a child, that is the worst thing that could be happening, but the co-ordinators try to turn it into something with a positive edge."

Luke has been involved in what he calls "the transplant community" for five years – and on engaging the public for a year. He has no target for donations – and accepts the limitations of what is largely a web-based project. But he believes there is huge potential in his work, and developing the concept of "affiliative leadership" is key to driving it forward. "Essentially, it is about making people realise you are a regular guy, who they can have a beer with after work.

"If you asked what is your transplant surgeon like, people might say very committed or brilliant – they might be surprised to find they are normal people with families and hobbies, rounded human beings."

Luke himself fits the bill. The 35-year-old is married to Angela, a psychiatrist, and they have three young children. He likes cycling, spending time with his family and enjoying holidays in the wilder parts of Scotland.

Yet he could also be said to fit the "committed and brilliant" description. He is one of only a handful of recipients of an award from the Health Foundation that allows him to split his time between medicine and science (he is qualified in both) and spends hours in the lab looking at how to increase the potential of organs that are donated.

He is cautious not to make overblown claims about what he can achieve. "It's all about a cultural shift as we show our human face and our solidarity to the world," he says. "The transplant community needs to show itself as a trustworthy group of normal human beings that work hard for the greater good. If we can build public trust in us as people, an obstacle to transplantation is removed."