Patients’ dilemma over rise in high-risk organ donations
Increasing numbers of transplant patients are being given organs from smokers, drug users, or people who have had cancerous tumours, because of the dire shortage of donors in the UK.
Figures obtained by Channel 4 News and the investigative bureau, OpenWorld News, show a significant rise in “high risk” donations, including those from people aged over 60. More than a third of donations now come from this age group.
The number of organs donated by people with a history of drug use has also doubled in the past decade, and about 45 per cent of of donated organs come from smokers. One-third of kidneys now transplanted fall into the “high risk” category, while “high risk” livers used for transplants are up from 13 per cent in 2003 to 39 per cent in 2012.
The startling rise in these donations is a direct result of the severe shortage of donor organs in the UK. According to NHS Blood and Transplant, the body responsible for increasing the supply and quality of transplant organs across the UK, there were only 1,200 donors last year, yet there are 10,000 people in need of a transplant.
Professor James Neuberger, NHSBT associate medical director, told Channel 4 News that the UK had the “unenviable” position of being the second highest country in the Europe for refusal rates. “Although 90 per cent of people say they will take an organ, when you ask them if they would donate, nearly 45 per cent say no,” he said.
“Therefore we have a shortage of organs. We have people waiting and we have people dying.”
Although Prof Neuberger is keen to point out that there has been a 60 per cent increase in the number of organ donors in the past six years and a similar increase in the number of transplantation, the simple fact is that three people a day die while waiting for a transplant.
This has left surgeons with little option but to turn increasingly to the “high risk” groups which has, in itself, raised a number of ethical issues.
Colin Grannell, for instance, has led a campaign to ensure patients waiting for transplants are told if the donor organs come from this group, following the death of his daughter from lung cancer in 2012.
Jennifer Wederell was born with cystic fibrosis and was put on the lung transplant list in 2009. After 18 months, she was told that a pair of lung had become available. What she was not told, when the doctor ran through the list of risks associated with transplantation, was that the lungs were from a middle-aged person who had smoked 20 a day for most of her adult life.
The hospital subsequently apologised. But Jennifer, who had married the year before her death, only lived for 17 months after that operation.
Tragically, Jennifer’s brother had also died from cystic fibrosis while waiting for a transplant. But Mr Grannell said Richard had died peacefully – while Jennifer’s death from metastatic lung cancer had been “horrific”.
His daughter, he says, would not have taken those lungs if she had known they had come from a 20-a-day smoker. “I know that because she told me,” he said. “But she was not given that choice.”
There are guidelines that say the recipient must be told the age and lifestyle characteristics of the donor and Mr Grannell believes that the campaign, Jennifer’s Choice, has raised awareness among clinicians that this must happen.
Now they want to raise the number of organ donations – perhaps using social media or sites similar to the Just Giving online fundraising site. Thought this, he says, there is hope there will be more healthy organs donated.
Prof Neuberger agrees that there must be complete transparency, that patients must be presented with all the facts possible. But he adds there must be a necessary weighing up of the risks.
“It is a trade-off because of the lack of organs,” He said. “We know that the lungs from smokers do slightly less well compared with those who haven’t smoked. But the research shows that the outcome is better to take lungs from smokers than to risk it and wait for non-smoker’s lungs to be donated because they may not arrive in time.
“If you have a liver patient who is ill but not at immediate risk of dying, you may decide not to take a risk from a donor with a history of cancer.
“But if they are going to die within 24 hours from acute liver failure you will almost take anyting because while a five per cent risk of a tumour transmission is important, against the 95 per cent chance of being dead before the next liver comes a long, I think the answer is straightforward.
“But, again, you have to ask the pateint to make the decision because it affects their lives.”
‘High risk’ liver
And, indeed, we met Robert Balde, at the Queen Elizabeth Hospital in Birmingham, where he was sent after it was discovered he had a tumour on his liver. Mr Balde, of Rugeley, in Staffordshire, has been in need of a transplant for the past two years.
Although his tumour is currently dormant after three rounds of chemotherapy he was told that with no treatment he would be likely to die within two years, with treatment but no transplant he could survive for up to five years, but with a transplant he would effectively be cured.
I asked him if he would accept a “high risk” liver. “Absolutely,” he said. “Without hesitation. I want to be around and long as I can be. If it involves taking a risk, so be it.”
The greater risk, as far as he is concerned, is that the tumour will start growing again, will spread outside his liver and then he will no longer be eligible for a transplant.
The waiting for the phone to ring to say there is a suitable donor is, he said, stressful. To put it mildly.
To sign up to the NHS Organ Donor Register call 0300 123 23 23 or visit www.organdonation.nhs.uk
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