Patients’ dilemma over rise in high-risk organ donations

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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.

21 transplants w Patients dilemma over rise in high risk organ donations

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.

To sign up to the NHS Organ Donor Register call 0300 123 23 23 or visit www.organdonation.nhs.uk

Written By: Victoria Macdonald
continue to source article at blogs.channel4.com

22 COMMENTS

  1. 1 question, we do know how to use a persons own stemcells on the scrubbed “skeleton” of an organ to create an organ that can’t be refused by their bodies. why not do that on a big scale.

    • In reply to #2 by Blackaddera:

      1 question, we do know how to use a persons own stemcells on the scrubbed “skeleton” of an organ to create an organ that can’t be refused by their bodies. why not do that on a big scale.

      At this stage the only fully functional organ grown that way and transplanted successfully was a bladder made from healthy constituent bladder cells taken from a person who had to have their bladder removed due to cancer. It is still much too difficult to make a properly functioning organ more complex with (the bladder is actually pretty simple as far as organs go) that. AFAIR remember, lungs are going to be especially hard because of their massively complicated internal structure.

    • In reply to #2 by Blackaddera:

      1 question, we do know how to use a persons own stemcells on the scrubbed “skeleton” of an organ to create an organ that can’t be refused by their bodies. why not do that on a big scale.

      I haven’t heard about this particular stem cell technique but it sounds brilliant; good question.

      S G

    • In reply to #2 by Blackaddera:

      1 question, we do know how to use a persons own stemcells on the scrubbed “skeleton” of an organ to create an organ that can’t be refused by their bodies. why not do that on a big scale.

      The initial work by Ott creates a rat kidney but uses human umbilical cord cells to make the blood vessels. Our understanding of manipulating cell development to make a fully human kidney, presumably not for/from a baby, isn’t there yet as we’d need to work from an individual’s pluripotent stem cells to create everything to avoid rejection.

  2. In reply to #1 by aroundtown:

    The god bothered who stand in the way are responsible for a great deal of unnecessary pain and suffering IMO.

    As usual. Note the shooting of the doctor in the other thread.

    • In reply to #6 by A3Kr0n:

      Would it be safe to assume that if 45% of the population refuses to donate their organs that 45% of the people waiting for an organ transplant also refused to donate?

      I think it’s probably too small a demographic for any such assumption to be valid.

      • In reply to #10 by Katy Cordeth:

        In reply to #6 by A3Kr0n:

        Would it be safe to assume that if 45% of the population refuses to donate their organs that 45% of the people waiting for an organ transplant also refused to donate?

        I think it’s probably too small a demographic for any such assumption to be valid.

        Not only that but as organ donation in the UK is opt-in, I would presume this 45% figure comes from people in a position to donate organs (aka dead or dying) who have (or whose families have) explicitly refused. Of course if it doesn’t take into account people who have died without expressing any wish either way then the figure of those willing to donate is much lower than 55%.

        There are many people who don’t give it a seconds thought until they’ve received an organ themselves, at which point they’re not able to donate themselves anyway no matter how grateful and willing to donate they are.

        I really don’t understand why it hasn’t been changed to an opt-out or ‘presumed consent’ system yet. The common argument is that it would seem as though the state owned our organs, and usually leads to a slippery slope claim that we might one day have to pay to opt-out. Which is of course a load of horseshit when you put into perspective the immense tragedy this causes. The state doesn’t want your organs, they’re not worth any money here, the people who will die without them want them.

  3. Well, that is horrific. Just about as awful is the fact that when you transplant an organ, you are also transplanting whatever bacteria and viruses the donor may have been harboring. The transplant recipient becomes, in effect, a living petrie dish. When you consider the deadly, incurable, and novel new viruses out there today and the immunosuppression necessary to prevent transplant rejection, it’s a wonder we don’t hear more horror stories like this. In addition, this poses huge risks to the rest of the population, as microbes can mutate, exchange genes, and develop resistance at a wildfire pace inside an immunosuppressed host, possible leading to plagues of nearly invincible superbugs. Suffering a slow death from a failing organ is certainly tragic and agonizing, but so is death from cancer and untreatable infection. It’s a terrible situation.

    • In reply to #7 by Sue Blue:

      Just about as awful is the fact that when you transplant an organ, you are also transplanting whatever bacteria and viruses the donor may have been harboring. The transplant recipient becomes, in effect, a living petrie dish. When you consider the deadly, incurable, and novel new viruses out there today and the immunosuppression necessary to prevent transplant rejection, it’s a wonder we don’t hear more horror stories like this.

      Whoa, Sue, steady on! Viruses will proliferate and bacteria will still French-kiss the virulence-factor-du-jour to their neighbour regardless of what else we do to our immune systems. Transplant patients are going to be long-term hospital-goers which probably already puts up their risks of picking up a some resistant nasty. They’ll get broad-spectrum antibiotics sure, which again isn’t great.

      In addition, this poses huge risks to the rest of the population, as microbes can mutate, exchange genes, and develop resistance at a wildfire pace inside an immunosuppressed host, possible leading to plagues of nearly invincible superbugs.

      But is there any evidence that blood-borne infection is any worse when transmitted via an organ rather than e.g. a cut, a dirty needle or unprotected sex? You might get unusual stuff more commonly perhaps but I would hypothesise that, if anything, an immunosuppressed host is going to die faster (and so provide less selection pressure) and not want to hang around with others who they might make ill or get ill from. In any case, I don’t see this as necessarily ‘worse’ than say, a cancer patient’s chances of infections whilst on chemo.

      • In reply to #12 by Docjitters:

        In reply to #7 by Sue Blue:

        Just about as awful is the fact that when you transplant an organ, you are also transplanting whatever bacteria and viruses the donor may have been harboring. The transplant recipient becomes, in effect, a living petrie dish. When you consider the deadly, incurable, and…

        Yes, the microbial impact of a transplant can be much greater than that of a blood transfusion. There’s an interesting book called “The Viral Storm – The Dawn of a New Pandemic Age” by the virologist Nathan Wolfe. In a chapter called “The Intimate Species” he details the microbial dangers of transplants and the petrie dish potential of immunosuppressed patients. In one example, the only known cases of human-to-human transmission of rabies occurred as a direct result of cornea transplants. Patients in Texas and Germany received rabies-infected tissues and died of fulminant rabies. Because rabies is rare in humans, tissues aren’t tested for it. There are many other viruses that either aren’t routinely tested for or for which no test exists. Rabies is a particularly horrible way to die, and I’m sure the patients who only wanted to be able to see well would have rather lived out a normal, albeit visually-impaired, life than die in rabid convulsions. Malaria, particularly Plasmodium vivax, has the ability to lie dormant in the liver for long periods of time without causing obvious damage. Transplanting a malarial liver would be more than a little unpleasant for the recipient. A 62-year-old woman who received such a liver subsequently developed malaria. “Even though she’d never visited the tropics, her liver had”.
        As far as microbial evolution goes – yes, microbes mutate and exchange genes wherever they are. But in the body of an immunosuppressed patient, whose body potentially harbors all kinds of hospital-acquired exotic microbes, it’s a microbial free-for-all without an effective immune system to spoil the fun. This augments the potential for those microbes to exchange virulence and other dangerous genes with microbes they would have otherwise never met. New and increasingly dangerous resistant strains of bacteria such as MRSA, VRSA, MDR-TB, and others have exploded in immunosuppressed populations around the world, and quickly spread to others. This represents not only another agonizing death for transplant and AIDS patients, but a real threat to the community at large.

        • In reply to #16 by Sue Blue:

          Fascinating – I’ll check that book out. It’s not that I disagree with you overall but I felt your point about a tiny proportion of transplant recipients harbouring alien infection was somewhat unfairly overshadowing the desperate need to have a transplant in the first place and the benefits it reaps for society beyond the risks of (real and interesting) microbial mutation.

          My other thought is that the emergence of multi-drug resistant nasties is a function of our overuse of antibiotics (which could have been preventable in hindsight) though I agree that being able to free-run around like a kid in a candy store can only benefit microbial survival.

  4. The organ donation system contains a fundamental flaw which has led to the situation described in the OP: it relies on the idea that unless someone has made clear his desire that his organs can be used when he dies, he must want to hang on to them post mortem.

    The presence of grieving relatives who don’t wish to see their loved one “suffer any more than he already has,” preferring to remember him as he was in life, exacerbates this problem, because in the absence of anything on the official record detailing his wishes they become his legal proxy; a status which exists already if the deceased is below the age of consent.

    The Ulster Unionist politician Jo-Anne Dobson has been lobbying to change the existing organ donation laws in Northern Ireland to one of presumed consent, with a soft opt-out system – your organs can be taken unless you stipulated otherwise – but she faces opposition:

    Organ donor Bill: Jo-Anne Dobson pressing for a new law for over a year – but suddenly it may be sunk by rival

    Personally, I would do away with any opt-out, soft or otherwise: human rights end at the moment of death.

  5. 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.

    A second option would be to conduct a nationwide survey, the results of which would constitute a legally binding contract. If you insist that on your death your organs cannot be harvested, you don’t then get to become an organ recipient in the event you should require it.

    It would be similar to insurance too: you can change your mind anytime you like, but not after you’ve become poorly.

  6. In Ontario, Canada, my health card notes I am signed up to be a donor. It would be simple enough to say to those who might need a transplant, if organs are scarce, “Sorry, I see here that you yourself did not agree to be a donor, so I am afraid you don’t qualify to be a recipient. Others who did sign up are also in need.” I suspect merely announcing this protocol would encourage more people to sign up. If I remember correctly, there are several categories as to which/how many organs you would agree to be taken, so it is not necessarily an all-or-nothing approach. I am thinking seriously about donating my body to science, as a lifelong non-smoker, non-drinker, no recreational chemicals, no tea (ever !) and almost no coffee and very few meds. Yeah, I know, I’m a cheap date and no fun, but maybe there is something that could be learned from my tissues….

  7. Part of the (non-standardised) definition of ‘high-risk’ transplants includes organs from those who are over 60. Since your overall risk of cancer and having done something ‘high-risk’ tends to go up over the course of life, it’s not surprising they make up a higher proportion of donors. It’s an (fortunate?) fact of the demand that donors can’t all be young traffic-accident victims with brain injury.

    Here’s a recent review by a past President of The Transplantation Society. Those who need a transplant are more likely to get or have undiscovered cancer in the first place vs. matched controls and those who are transplanted are at higher risk of lots of cancers unrelated to the donors’ risk factors, some of which are quite common anyway. When it’s 5% risk of cancer vs 90% chance of dying next week, I guess you just have to pick your poison.

  8. In Quebec, you have to opt-in and sign on the back of your driver’s license to be an organ donor. This is the worst approach because it’s the one that produces the least volunteers. Daniel Kahneman discusses this in his book “Thinking Fast and Slow”: studies have shown that participation rate is higher when organ donation is the default option and one has to opt-out if they don’t want to donate organs. This is due to the “framing effect”.

    *Note that all the participants of the study have been made explicitly aware of the opt-out option to eliminate any bias in the results.

  9. The organs may come from those who’ve had dodgy life styles but I don’t imagine that the organs themselves are anything other than sound.

    In any case, even if I were to be told that the donor of an organ that could save my life had put themselves about a bit, I wouldn’t turn my nose up at the opportunity to have it installed.

  10. An easy solution to bring more viable organs into play

    An opt in for everyone over 18. If you wish to be eligible to receive a donated organ, you must be registered as an organ donor and give blood at least twice a year.
    If you choose to opt out, no blood transfusion, no organ transplant.

    • In reply to #22 by Big Softy:

      An easy solution to bring more viable organs into play

      An opt in for everyone over 18. If you wish to be eligible to receive a donated organ, you must be registered as an organ donor and give blood at least twice a year.
      If you choose to opt out, no blood transfusion, no organ transplant.

      Superb idea.

  11. I had a successful heart transplant 2 years ago after nearly dying from congestive heart failure. As part of the pre-transplant work up, I was asked if I would consent to a high-risk donor, as well as any particular reservations I might have about receiving an organ from another race, sex, sexual orientation, sex worker, convict, etc. As I consider the heart as a muscle/pump only, the donors’ lifestyle was not my concern, as long as the medical team determined it to be viable, healthy, and the proper size & tissue type I required. My donor organ was carefully screened prior to my team’s approval. It turned out to be from a 19yr old female, who suffered a tragic head trauma.
    I was also intensively prescreened for potential health problems post-transplant. I was ALREADY immune-suppressed, having been non-detectable HIV+ for the prior 26 yrs., and have had no problems with the proscribed anti-rejection regimen. I’m 67, not overweight, don’t smoke or drink, very active, and was one of the first HIV+ patients transplanted in the US. Keep an open mind, keep yourself in good physical condition, and leave screening issues to highly skilled transplant teams with supurb objectivity!

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