21 Jan 2014

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.

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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.

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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.

‘Horrific’ death

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.

Complete transparency

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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11 reader comments

  1. lee whiting says:

    Why not simply make the whole issue go away by making organ donation an opt out rather than opt in? If people feel so strongly about organs being whisked away they have the option to opt out!

    1. john dickens says:

      Agreed. I find it totally incomprehensible that anyone could refuse anyway. What is their `thinking’ for want of a better term?

  2. Elwyn says:

    I had a heart transplant from a ‘high risk’ donor. I learnt of the additional risk after the successful transplant, that was ten years ago, so have had a long time to consider this issue. The medical/surgical team made the call for me, and I am thankful that they did.

    Given the choice of a heart from, say, a sixty year old marathon runner or a teenage twenty a day smoker, which would you choose?

    Patients on the brink of death are in no emotional state to choose and don’t have the expertise of our world class transplant professionals.

    People are more likely to need an organ transplant than they would ever likely to be a donor. We really do need an ‘opt out’ system now.

  3. Julia Jones says:

    I am currently awaiting a liver transplant and have been given the hepatitis b vaccination in preparation for this as they cannot afford to turn down organs of people who have had the disease. Would I accept a high risk organ ? Absolutely given the choice between that and death it’s a no brainer.

  4. Anne Crocker says:

    I’ve always carried a donor card, but since hearing Ms Macdonald’s offensive report last night I may just chuck it in the bin. Why? Because two-and-a-half years ago I was diagnosed with breast cancer. So now apparently I’m a pariah, lumped in with drug abusers and heavy smokers.

    Ms Macdonald could hardly hide the disgust in her voice as she said “they may have come from people who have had CANCER” and the pity she felt for folks who might have to choose between death or taking a tainted organ from the likes of me.

    She seemed to be saying “if only more young, really healthy people would just die in accidents (instead of selfishly staying alive) we wouldn’t have this problem!”

    Far from making people want to sign up for organ donation, I would think most people seeing this report would think “stuff you then, if I’m not good enough for you!”

    1. lee whiting says:

      That I’m sorry to say sounds rather petty, does it really matter what someone thinks about you in that respect? You should be proud for the simple fact that you could one day save somebodies (or several somebodies) lives, regardless of whatever someone else thinks & isn’t that the point really?

  5. Luke L. Haslam says:

    I was actually under Prof. Neuberger at the QE in 2012 when I had a liver transplant. I have no idea as to the history of the liver I received but I know for definite that without it I would have been dead by now.

  6. liz says:

    I’m a student working in the organ donation field in the US and reading this article it seems we do things a bit different here than in the UK although I don’t know much about the donation world in the UK. Here in the US we inform patients of any high risk behavior the donor has and it is up to the patient if they want to accept the organ with the guidance of their Dr. Of course. We do accept donors who are “high risk” although we call it increased risk here and in the US people with active cancer can’t be donors but if you’ve had cancer in the past and are cancer free at your passing you would be considered as a donor. Here we have organ procurement organizations and they are in charge of informing the public on organ donation. Do you have a group like that in the UK? If so I encourage everyone to seek them out and get the facts on how donation works in your country and not take the opinion of the news media. Organ donation is a wonderful thing and I encourage everyone to be a hero if given the chance.

  7. henna says:

    I would like to be given a choice about who I donate to. There are10s of thousands of people waiting, some from no fault of their own – EG they have cystic Fibrosis – I would willingly donate to this group. I would not want to waste an organ or put my family through even more grief by having an organ go to to an elderly alcoholic smoker,for example, in the knowledge that most likely they would abuse my organ and some other person who had been careful would die. I am Thinking high profile George Harrison etc who had a transplant and then went on to abuse that gift! So there you have it – I suspect there are others who also think like me, and many who think I am selfish, but that’s what I think – willing to donate but with caveats. Since the system does not consider those caveats – I don’t carry a card.

    1. Juan says:

      Recipiente selección committees are there to make sure the recipient deserves the organ. No drunk would receive an organ unless he has proved change and rehab process. In fact former alcoholics very rarely recidiv. I know Georgie Best damaging story… Unfortunately many patients receiving Care damaged their bodies with reckless behavior in the past. Medical Community work to improve health of Society not to judge it. They give recommendations, including prevention. But if someone acquired HCV thirty years ago while on IV drugs, rehabilitated and now in his 60’s develops cirrhosis and Liver cáncer, Health System is going to help. Throw the stone if Free of sin

  8. Valentina Sherren says:

    As I have health issues myself, I have subconsciously thought about organ donations. If I needed a transplant fairly urgently, I would, most likely, accept one from someone in the high risk category – but I should be given the option to choose. What would be much better options would be organs made from metals or other inorganic substances, animal organs or organs grown on the backs of mice, etc. I don’t particularly fancy a pig’s heart, for instance, but that’s better than dying. I’d like to think we would have more choices than human organ donations with all their potential problems.

Comments are closed.