A transplant war of my own

November 23, 2008
A transplant war of my own
If anyone knows what it’s like to wait for three nail-biting months for a suitable organ, it’s my husband
Rachel Johnson

I don’t usually make a habit of disagreeing with my husband in public, especially when it’s about something important such as whether we should have to opt in or opt out of the organ donor register. When it comes to that, he’s the expert.

Three years ago, you see, my husband got a new body part. He owes his health not just to the premature death of one young man, who had taken the trouble to register on www.uktransplant.org.uk, but to many others: those who counselled the bereaved family; the score of surgeons who worked through the night at Addenbrooke’s hospital, Cambridge, first to dissect my husband’s diseased liver and then to graft the healthy organ into place; the nurses who run the high-dependency unit where he recovered consciousness, sprouting a spaghetti junction of tubes and wires. The professionals took his life in their hands and saved it.

If anyone knows precisely what it’s like to wait by the telephone for three nail-biting months, hoping that each ring is the call to say a suitable organ has become available, it’s him.

So, you might think, the vexed government plan to move to a system of “presumed consent”, whereby the law would be changed to designate every person a donor unless they or their nearest and dearest actively opt out, would be one of the few things that my husband and I might agree on. After all, we went through his ordeal together, although whenever I bring it up he will sweetly ask, “So, yes, how was my transplant for you, darling?” He was one of the lucky ones. He’s still with us because someone else died and donated.

But here is where everything gets a bit weird. We disagree. It’s not that he has forgotten the agony of waiting. It’s more that his libertarian bent will not countenance this general attack on biological integrity, whereas all I can think is: my children have a father and if we’d had presumed consent, he might have had his lovely new liver sooner. Oh, and, since presumed consent is expected to increase the supply of organs by 30%, almost a third of the 440 people who died last year waiting for donor organs could have been saved.

So I can’t understand the line taken by the Organ Donation Taskforce, the panel that last week recommended sticking with informed consent, the clever system that somehow turns near-universal approval of organ donation into a sign-up of only 24%. The same clever system that allows relatives to veto donation even when the deceased is a known donor, so that the actual donation rate is 10%. The same clever system that has resulted in Britain having one of the lowest donation rates in Europe. The numbers are big: there are thousands (at least 7,655) of potentially savable patients on British waiting lists, hoping against hope for healthy young men to die in motorbike crashes. (I admit it. I had the same hope three years ago.)

I can’t help it. I’m with the prime minister and medical profession on this, not my husband. I think the law should be changed so that everyone who doesn’t specify otherwise is a potential life-saver rather than a refusenik. I still say give and let live, even if my husband prefers a patented system of his own devising, whereby when a person reach-es the age of 18, his wishes on donation are recorded by his GP and held on file.

The gap between supply and demand is at an all-time high. And yet the experts who reported to the government last week mainly banged on about life being a gift, and about how presumed consent would demolish trust between doctor and patient – as if surgeons will move in packs towards deathbeds to hover over those about to breathe their last so they can start the harvest of viable organs. Which is not so much bonkers as malevolent, given the situation.

Of course, life is a gift – and it would remain so under a system of presumed consent. The opt-out system would place the onus on the individual to make just one simple decision about whether he or she wants to give. Relatives would still be consulted. As for trust, the suggestion that presumed consent will lead to a wholesale cannibalisation of the dying is an insult to those who work in the National Health Service and those who believe in it. Different teams of doctors operate in intensive care and transplantation wards; they all work under the aegis of the Human Tissue Act 2004 – legislation that stringently regulates the removal, storage and transportation of human tissue.

So when objectors to presumed consent declare that the NHS couldn’t run a whelk stall, let alone a complex system in which its employees have to reconcile, in the most humane and moral way, the desires of the deceased and the needs of the living, I bridle. Because it can. And does. Been there, done that, got the T-shirt.

Of course, presumed consent is not the whole answer. We need more liaison, more intensive-care beds, more transplant, liver and cardiac units, too; in other words, we need a miracle. But until the Almighty delivers one up, I suggest we put our faith in what we do have: the NHS.

http://www.timesonline.co.uk/tol/comment/columnists/rachel_johnson/article5212403.ece