The painful choice to offer a life after death

Published on Monday 17 November 2008 20:37

IMAGINE waking up every morning wondering if today will be the day when the phone rings with a message that could save your life. This is the reality for thousands of people needing an organ transplant, realising that, for them to live, someone else has to die.

As of yesterday, there were 7,929 people in the UK on the waiting list for a heart, kidney or liver, or another organ.

Many had hoped their chances of a transplant would be boosted by a new system of "presumed consent" on organ donation – meaning people have to opt out of donating their organs after death, rather than opting in by joining the organ donor register as at present.

But yesterday, experts advising the government said there was "insufficient evidence" to support a change to presumed consent, which is the norm in countries such as Spain and Sweden. This leaves the UK in a difficult position. With one of the lowest donation rates in Europe, it must now look for other ways to increase transplants – and help prevent the deaths of 1,000 people every year while on the waiting list.

Elizabeth Buggins, who led the Organ Donation Taskforce, said that, while it had not recommended an opt-out system for organ donation, it believed other measures would help to increase donors.

She said it was important that families did not feel "bounced" into a decision when asked if their loved one's organs could be used to save someone else. "People who have received an organ said that the concept of a gift, of that organ being freely given, is very important to them," she said.

Mrs Buggins said the key to increasing the number of donors was more co-ordinators working in hospitals to deal sensitively and effectively with bereaved families. She also said there needed to be an increase in the number of staff ready to retrieve organs from donors. Concerns have been raised that opportunities are being missed because staff are not in place to retrieve, transport and carry out the transplant surgery.

In Scotland, there are moves to address these issues, with plans to recruit six donor transplant co-ordinators by March.

Funding is also available to appoint "clinical donation champions", starting with Aberdeen, Dundee, Glasgow and Edinburgh, which have the biggest intensive care units. One of the arguments that seems to have emerged in opposition to presumed consent is that it would do little to increase the number of people willing to donate.

The taskforce's report pointed out that, at 13.2 donations per million of the population in 2007, the UK was well behind countries such as Spain, with a rate of 34.4. But the experts also heard from those in charge of transplantation in Spain, who said presumed consent was not behind their higher rates. Instead, they suggested other systems – including the use of transplant co-ordinators – were behind their success.

This was backed by figures in other countries. In Sweden, where presumed consent operates as it does in Spain, donor rates are among the lowest in the world at just over ten per million people.

The taskforce voiced concerns that presumed consent might actually reduce the number of donors – despite such a system being widely backed by many in the medical profession, including the British Medical Association, as well as the Prime Minister and England's chief medical officer.

One of the chief concerns was that an "opt-out" system might undermine public trust in healthcare workers.

The report found there were fears that people might think the care of their relatives could be compromised by the pressing need for transplant organs. Dr Paul Murphy, a member of the taskforce and an intensive care doctor in Leeds, said: "Not all members of the general public are supportive of presumed consent. They find it dehumanising, and they find it in conflict with choice, responsiveness and patient autonomy."

Dr Murphy said such a system could undermine the concept of donations as a "gift". But the challenge now is to encourage more people to pledge to give this gift.

Mrs Buggins said a major public campaign was needed to increase donor numbers. In Scotland, about 30 per cent of the population – 1.5 million people – are on the organ donor register. Advertising campaigns such as "Kill Jill", in which viewers are asked if they would be willing to donate their organs to save someone's life, are currently being evaluated to see if they could be made more effective in recruiting donors.

But Mrs Buggins also said campaigns and education schemes needed to "dispel the myths". She said some people wrongly believed that donors had to give up their organs before they are dead.

Dr George Fernie, a member of the BMA's Scottish Council, said the vast majority of people he spoke to were very much in favour of organ donation, yet those on the donor register remained low.

"We need to encourage people to talk to their families about their wishes," he said. "It is like signing wills: people put it off because they worry it will tempt bad luck. We need to get more people on the register."

Dr Fernie said the BMA continued to believe that presumed consent would lead to a 10 to 15 per cent increase in donated organs – if sufficient surgeons, intensive care beds and transplant co-ordinators were also put in place. But it now seems the UK may have to wait for five years until the issue is reviewed again. In the meantime, patients must wait to see if efforts to increase donor numbers are successful.

Alan Johnson, the Health Secretary, wants to see the number of people on the organ donor register in the UK rise to 25 million by 2013 – up from about 15 million now. In turn, it is hoped that the number of actual donors will rise from about 800 now to 1,400. Each donor helps an average of three transplant patients, meaning currently about 3,000 operations are performed each year – but this could rise by 1,800 if more join the donor register and hospitals improve transplant co-ordination.

In the meantime, patients continue to wait for the phone to ring…

'Having a transplant means that I am now able to live a normal life'

ANNA Burnett knows her life could have been very different had she not had a transplant when she was nine.

She was diagnosed with Crigler-Najjar Syndrome as a child – a rare condition affecting the liver and causing jaundice and other problems.

It meant that Miss Burnett – now aged 23 – had to lie under a special blue light for at least 15 hours a day.

But, after having part of a donor liver grafted on to her own, she is now able to live a normal life and has recently graduated in fashion design.

Miss Burnett has also proved to be a talented athlete, taking part in the Transplant Games and winning many medals for her sprinting efforts.

But the young woman, who lives in Edinburgh, remembers well what her life used to be like.

"I had to sleep under the light," she said. "If I wanted to do things in the evening, like Brownies or go out to play, I had to come home from school at lunch time and after school to stay under it, and then I would be allowed out for a few hours in the evening.

"I had to be in bed by seven generally every night. It was very difficult, especially as I got older."

Miss Burnett had to have regular blood tests to check on her condition. If she caught an infection and fell ill, she would have to spend 24 or 48 hours continually under the light.

"When my friends had sleepovers, I couldn't go to them," she said. "But my parents were really good. "When I had Brownie camp, they would bring the caravan with the lights in it so I could still go. It would have been a lot more difficult without it."

Miss Burnett was on the waiting list for a liver for six months before she had her transplant in 1996, shortly before her tenth birthday.

She was in hospital for three weeks after having part of a liver grafted to her own to help treat her condition.

"When I came out of hospital, I didn't need to sleep under the lamp anymore," she said. "But I have to take medication. I had a few minor problems later on and had to go back for check-ups and adjusting medicines. It takes a while for your body to get used to what has happened.

"But having the transplant was just incredible. I remember sitting on the sofa after coming home from hospital and thinking I don't have to go straight to bed.

"I take part in the Transplant Games. I am the British and European champion for sprinting. I am able to train really hard. I do fencing as well. I just go out and do everything I want to."

Miss Burnett now works part-time as a bus driver, while carrying out some fashion design work the rest of the time.

She said she had hoped an "opt-out" system would have given other people the chance that she had been given through a transplant.

"I think so many people could benefit," she said. "I think a lot of people misunderstand what would happen if it was brought in.

"It is not about forcing everybody to do it. It just makes it easier so people do not have to think about it, because it's not a very nice thing to think about what's going to happen to your body after you die.

"If people don't want to do it, then that is absolutely fair. I would not want anyone to be pressured into doing it."

But Miss Burnett said she hoped increased publicity would persuade more people to join the donor register.