Presumed Consent

The gift of life is an amazing one and there is nothing I want more in life than that gift says Edmund Brown.

It seems to be the longest wait of my life, waiting for the kidney that will change life as I have known it over the last five years. I do, however want a kidney that has been given with the blessing of its owner. The government is considering taking that choice away and that just does not seem right.

The system used in the UK for organ donation is one where members of the public offer to donate their organs when they die. However, the ‘opt in’ system, as it is known, is not working with currently 9,000 people waiting on a transplant and only 3,000 transplants taking place each year. The number of people waiting for a transplant is increasing by 8 percent annually and this is why the Scottish government, along with its Westminster counterpart, is looking into changing that system. It aims to replace the current opt in system with an ‘opt out’, where members of the public have to specifically decide not to donate their organs or will be presumed they have given their consent.

Every week I meet people at hospital in the same situation as me, needing a transplant to change their lives from the restrictive, tiring, aggressive and time consuming treatment that keeps us alive. In the last five years I have received this treatment three times a week for four hours each time. The number of people on dialysis is increasing all the time and space to accommodate patients at the three Edinburgh hospitals is getting extremely low as a result of very few transplants taking place. Numbers show that in Edinburgh there are 300 people being dialysed on the NHS each week at a cost of £150 per person for each session.

Therefore, something drastic needs to be done to increase the number of transplants and essentially give people their life back. Achieving this would also lower the amount of tax payers’ money being spent on kidney patients; having a transplant compared to living on dialysis would save the NHS up to 80 percent. Naturally all the dialysis patients I have spoken to believe in a system that will provide more kidneys, however everyone is of the opinion that it must be the donor’s choice and not one forced upon them.

Donating your organs when you die is a special gift from one person to another. It shows bravery, consideration and generosity of spirit to give others a new lease of life when you are losing yours. If they change the organ donation system to presumed consent, I believe this special gift to someone in need is taken away.

Dr Caroline Whitworth, Renal Consultant in Edinburgh said: “Transplantation is seen as a special thing and rightly so but it needs to be seen as “bread and butter”, something that happens every day. This would take away the fear factor of donating organs so it would be like getting a flu vaccination, something easy. I do not believe the British public is ready for the change in the donation system and there is too much fear that organs will be removed against people’s will. If you look at recent stories in the media highlighting stolen organs, that sort of publicity knocks the whole system back to square one.”

Dr Whitworth believes it would also be helpful to have a factually correct story in one of the soap operas to highlight the need for transplantation and what this brings to a persons life. The effects of positive publicity would not only give the public more confidence in the NHS but would also bring back a sense of trust that has been lost as a result of negative stories in the press.

Preparing the public for that time when a relative dies is a delicate subject and the timing of when this is done can make all the difference as to whether or not the donation process goes ahead. It is very stressful and distressing when a loved one dies, so to decide on the spot if a loved one would like to give away his or her organs is a very difficult choice to make.

The number of people on the transplant waiting list in the UK is currently at 9,000 with an increase of around 8 percent each year. There were 3,000 transplants last year with 1,000 people dying before they got a new organ. The idea of presumed consent is supported by 90 percent of the population and around 15 million people have registered to donate their organs. However, the actual number of organ donations that take place is extremely poor as 40 percent of relatives refuse to give consent for organ donation. A governmental task force has been set up to deal with ways to increase organ transplantation by 50 percent in the next five years to fall in line with other Western countries.

As Mr Ernest Hidalgo,a Spanish transplant surgeon at Edinburgh’s Royal Infirmary, has worked in both countries. I asked his views on why the transplant system in Spain where presumed consent is used is vastly more successful and why he thought the British one was failing.

Mr Hidalgo, from Barcelona confirmed that there are many reasons why the system in Spain works. He explains why changing the law in the UK is not the solution: “The current system in the UK is not satisfactory. There are many ways to make it better without changing the law and even if you did change the law to opt out, you still always, always ask relatives if you can remove organs. So even if the law was changed, there would be no change in the number of donations as relatives would still refuse donation.”

He also feels that there are cultural differences that play a key role.

“To compare Spain and the UK is very difficult due to cultural differences. One of the main things is that Spanish people are quite proud of their transplant system so they support it, which is different from the UK. The media in Spain is very supportive. The whole country is backing the transplant system with the media reporting all the positive cases, making the country more aware of what is happening. The problem in the UK is the media only focuses on the negative stories and this undoubtedly has an effect on the number of transplants. I would favour a change in the donation system to opt out, but this is only one part of the process.”

According to Mr Hidalgo, education is also critical when it comes to tackling relatives’ fears and concerns when granting permission for organ transplants: “Education is very important. To teach children from a young age makes them ready to donate once they reach maturity. In Spain, they have a national organ transplant education system. They send representatives into schools and teach children about donation. The numbers of relatives who refuse the donation of organs in Spain has been around 21 percent for the last 10 years whereas in Scotland it is 40 percent. You can change the law tomorrow but you will still have 40 percent of relatives refusing to donate organs. Therefore education and knowledge is vital.”

Figures for transplants in the UK show that there are about 10 donations per million people. The reason the Spanish do not have such a long waiting list is that their transplant figures show roughly 35 donations for every million people. In simplistic terms, Spain has three times more transplants than in the UK.

Mr John Forsyth is the Clinical Transplant Surgeon for liver and kidney patients at the Royal Infirmary in Edinburgh. In his opinion: “The evidence seems to suggest that presumed consent will do no harm, that it will not make it any worse. Some evidence even shows it could offer slightly more organs than the system at the moment but the evidence is not that strong. People get the idea that if they have presumed consent in Spain, where they have at least double the amount of transplants than the UK, then we should have presumed consent, but it is not as simple as that. Presumed consent was not the reason for the Spanish system being better; it is a result of them having the levers of machinery to complete the whole picture.”

Yet he believes change is on the horizon for the UK, in particular for Scotland, with key focus on both education and positive awareness in the media: “I believe it is getting better in the UK and in particular in Scotland, with an awful lot more positive attention being given to organ donation in the media and I have been doing a lot on radio and television to try and get the message across. We are getting the social education teachers in schools across Scotland to talk about transplantation and donation in their classes, as this can demonstrate ethical values that are good for school children to discuss. So we are addressing the education side of it and the publicity side of it but it is not enough. We must make donating a usual rather than an unusual event, to make it a part of end of life care. I would love the system that Spain has at the moment, as their system seems to work. We must not force the situation though as this could backfire and create a negative opinion of organ donation.”

There is also a big difference when it comes to admitting patients, who doctors know will die, into hospital. In Spain such patients are admitted into a high dependency unit with the view of ‘who can this person help’ yet in the UK there is a view taken that nothing can be done for this patient. This decision is often made on financial grounds rather than being based on the best care of patients.

I put this to Mr Forsyth who said: “I think this is a very negative way of putting it and I would think it was more to do with the NHS being stretched. Picture a high dependency bed where three people are trying to get into the one space; priority will be given to the one person who is most likely to survive. It is important that the ongoing benefit (that there maybe when a person dies and donates) is clear to all including doctors and nurses as well as family members in that tragic circumstance.”

There is a real sense that change is coming to organ donation with a lot of work being done by surgeons, doctors and the government. My view on presumed consent has change several times during the research of this article. As a patient on dialysis, possibly someone who should know more than most, I have found that my knowledge of how the system works has increased. I am now of the opinion that a combination of extensive education, knowledge given to relatives at the right time to make an informed decision, as well as presumed consent, will work towards more people receiving that all elusive phone call to tell them they have their chance of a better life.