This is a guest blog from Susan Gianstefani, @living_donor on Twitter.
For me, being a living organ donor is one of the best things I have done with my life. Since I first considered being a living organ donor, I have come to realise that it is by far the best way to help people suffering from kidney (or liver) failure, if patients are well enough to undertake a transplant.
As far as the actual experience of donation goes, it made me feel very privileged to play a part in the wonderful miracle of healing that is living organ transplantation at this point in history. The care and commitment of health professionals and the medical advancements of today make transplantation a unique opportunity for kidney patients. With the imminent threat of antibiotic resistance looming we don’t know how long this window of opportunity will be open for.
It has only been since 2006 that changes in the Human Tissue Act have made altruistic organ donation (donating to a stranger) legal in this country. Since then, with limited publicity, there have been 416 altruistic donations, the vast majority being kidneys.
However, there is still what I would claim is a resistance to discussing living organ donation alongside deceased organ donation. I’m not sure why. When there is publicity about the need for more organ donors, the conclusion is almost unanimously aimed at getting people to sign the organ donor register, and I don’t understand why there is not the same emphasis on promoting living organ donation. Deceased donation will never be able to fulfil the increasing need for organs but living donation can.
Quite often I find myself amazed at how living donation is almost a taboo subject (the elephant in the room) which people don’t want to talk about, when it is well understood by those “in the know” to be the best option for kidney patients awaiting a transplant, for multiple reasons. It is easier and cheaper than transplantation from deceased donors, the organs generally last longer and start working faster and, believe it or not, there are 500 times more than enough people in the UK, recent statistics have proven, who would consider donating to a stranger to completely wipe out the kidney waiting list.
The biggest factors working against deceased donation is that people have to die in the right circumstances (e.g. on a life support machine) in order to be able to donate, and their loved ones, who are understandably very distressed, quite often refuse donation.
Next time you hear about encouraging people to sign the organ donor register, note whether living donation is even mentioned as a viable option for family members, friends or strangers to consider as part of the solution to the growing problem of a lack of organs. If not, I think we should be asking “Why not?”
5 thoughts on “Living Donation…the Elephant in the Room”
Thanks for writing this blog Susan. Your passion and knowledge shine through. While there are renal units that actively promote the living donation option I do agree that in the main, the focus on organ donation does favour cadaveric donation. This despite the fact that living donation prior to starting dialysis is seen as the ‘gold standard’ in renal replacement therapy.
Don’t let your passion diminish!
It’s particularly noticeable in today’s press about the response to the recent NHSBT report that highlights the drop in organ donation rates for the first time in 11 years, despite a big effort to increase deceased organ donation, that living donation is not being discussed as a solution.
I’m curious if others in the GMKIN have any explanation as to why this is the case?
Thanks for the opportunity and encouragement to post this blog, Rob.
Could it be that because it isn’t promoted nationally and, apart from those who donate altruistically, living donation is only discussed in renal centres with those needing a transplant? If living donation does provide the best patient outcomes then we should be broadcasting that fact every time organ donation is mentioned.
I think perhaps it may be because people who could be promoting living donation are too sensitive about suggesting that someone could give up an organ while they are alive. I’m wondering if there is a policy in these big organisations that says “only promote deceased donation”. There is an initial fear of the concept of undertaking surgery to help someone else (I’m sure every person considering living donation has experienced this).
Perhaps this is because people who are promoting deceased donation don’t know enough about the benefit/risk ratio and they themselves have not considered doing it so they feel it would be wrong to suggest someone else does?
Perhaps it is also because the people at the top of the medical establishment are too concerned about appearances, the “what if” scenarios or possible scandals. The case with their long and inappropriate resistance to legalising altruistic living donations proves this point.
I had to donate abroad in 2002 because it was illegal for me to do so here in this country. The fact that the United States accepted altruistic living donors for many years before the UK did proves the UK were just more conservative than the US in this respect. Having said that, altruistic donation is still unaccepted in Germany and other European countries, so the UK is ahead of most of the world with altruistic donations.
Some surgeons are apprehensive to or even refuse to operate on a living donor for the sake of a transplant. They won’t look beyond the “do no harm” principle and won’t or can’t seem to see the bigger picture to evaluate the ethics in the greater perspective of the issue. Doing surgery on anyone does some “harm” but the result is that is helps the person undertaking the “harm”. What gets complicated to these people ethically with living donation is that the surgery is being performed on a perfectly healthy person for no physical benefit to themselves personally with a potential risk of death. So people need to have a concept of what’s good for society overall, and what are the actual realities of the risks, and not just what benefits individuals.
I have learned so much about living donation from you Sue, thank you.
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