All of Us Have the Ability to Give the Ultimate Gift

By ANNE JOHNSTONE

IMAGINE that each year, somewhere in the UK, every inhabitant in a village of 1000 people died needlessly. Of course, it would be a national scandal. Yet that’s the number who die annually waiting for a transplant. Three every day. As you read this, 7679 people are wondering if they will die or if the telephone will ring to tell them that a heart, lung, liver or, most probably, a kidney has become available. More than 700 of them are in Scotland.

If this were Spain or Sweden or Poland, these figures would be far lower and the chances of that phone ringing far higher. This is because when people die there, unless they have specifically opted out of the system, it is presumed that, since they won’t be needing their organs any more, they can be used to save the lives of others.

Addressing a conference in Edinburgh this week, Scottish Health Secretary Nicola Sturgeon, who previously seemed quite enthusiastic about “presumed consent” for organ donation, appeared to back away from it. Instead, she opted to stress what she thought could be done to tackle the issue without changing the law, seemingly on the basis that the public isn’t ready for such a change.

If I was a transplant doctor in Scotland, this would exasperate me, and if my son needed a kidney to survive, it would anger me, for, as Stuart Rodger of the Royal College of Physicians of Edinburgh told the conference: “Scotland is facing a major crisis in terms of a shortfall of suitable organ donors.”

Sturgeon’s position may be influenced by Scotland’s chief medical officer, Harry Burns, who has publicly doubted that there is evidence of support for presumed consent. It is a position shared by the Patients’ Association. Why do they put the interests of the dead and bereaved above those of living, ailing patients? Interestingly, Burns’s English counterpart, Sir Liam Donaldson, is convinced that presumed consent is the only way out of the current crisis. I agree.

More than three decades ago I interviewed a guy who had recently received a kidney transplant. A few months previously he had counted his life in the days between the uncomfortable dialysis sessions that kept him alive. By the time we met he was planning his wedding and a walking holiday in Switzerland. “Life seems so sweet, ” he said. Buoyed up by his story, I asked my editor to organise a campaign to persuade readers to take out kidney donor cards. Thousands signed up and soon Glasgow council was on the line asking for cards to go into every public library. It was like pushing an open door. It seemed as if in no time nearly every one would sign up.

But there is a strange disparity between intentions and actions when it comes to organ donation and it is costing lives. Around 90per cent of us say we favour the idea but more than 35 years after the first donor card scheme was launched, only 25per cent of us are registered donors – 15,400,209, as of yesterday. And, while 64per cent of us favour presumed consent, according to the BMA, nearly half of bereaved relatives refuse permission for organ removal.

Nicola Sturgeon seems to think that publicity, plus measures such as increasing the number of transplant co-ordinators and organ retrieval teams, can somehow bridge this gap. But what we need to change is the mindset of grieving relatives who, for understandable reasons, aren’t thinking straight. Surely the answer is to create a new default position, namely a culture in which we presume they are going to consent to save someone’s life – in the case of kidneys, it may be two lives.

Without such a change, the situation can only get worse. In developed societies, medical advances and demographic change combine to produce an ever-increasing number of transplant patients because we live longer and survive more accidents and illnesses. The worldwide demand for kidneys is rising at 11per cent per annum, while donor numbers rise by just 4per cent.

As I observed a few weeks ago, the real nightmare is a disgusting global trade in kidneys that have been swindled from the poor or filched from executed prisoners, which is why it is so tragic that the debate about presumed consent in Britain has become so politicised.

No sooner had the Prime Minister signed up for the idea, than the “Get Gordon” brigade were out in force talking about “Orwellian”, “state-sponsored body-snatchers”"butchering” the bodies of our loved ones before they were even cold to “harvest” their organs. (The Alder Hey organ retention scandal hasn’t helped, which is why it was unsurprising that MSPs failed to back a change to the law in 2006. ) As ever, ignorance and misinformation play major roles in this debate. Take stockpiling. The image of vast stateowned fridges full of vital organs is completely misplaced because an organ would only be taken if there were a compatible patient waiting for it. It’s also important to understand why we need so many potential donors. Most of us will never become donors, even if we want to, because of the circumstances in which we die. Most donors will have suffered irreversible loss of brain function. Only ventilation and medication keep their hearts beating, a scenario that represents barely 1per cent of deaths.

Also, presumed consent is not the same as absence of consent. First, an independent ombudsman would monitor the procedure, which would still be subject to veto by the next of kin. This might mean that the number of donations would rise only gradually at first but experience elsewhere suggests that eventually hundreds of lives could be saved each year. In Spain, which operates such a “soft opt- out” system, there are 35 donors per million, compared with 13 in Britain.

Would presumed consent disrupt “the gift relationship”, the phrase coined by economist Richard Titmuss to describe the extent to which in a civilised society we are prepared to give something to strangers in need, without expectation of reward? Giving blood is the obvious example and it is worrying that the blood donor service, too, is struggling for recruits. A Mori Poll found only 1per cent of the population would spend an extra hour giving blood rather than lying in bed or gardening. If we had to opt out of organ donation rather than into it, perhaps it would help us rediscover our sense of altruism.

Sometimes politicians need to lead public opinion rather than follow it, especially when lives are at stake. That’s why I hope that when the UK organ donation task force presents its report this summer, the route will be opened to a change in the law on both sides of the border.

Britain pioneered transplant surgery but now has among the lowest transplant rates in Europe.

The real scandal about organ donation is not the prospect of state-sponsored body-snatching but the fact that thousands are dying while perfectly serviceable organs that could save them are being burned or buried.

Originally published by Newsquest Media Group.

(c) 2008 Herald, The; Glasgow (UK). Provided by ProQuest Information and Learning. All rights Reserved.