Scotland's new transplant system: The hurdles and ethical dilemmas

Humza Yousaf was one of the first politicians to voice support for a system of deemed consent, which has led to Wales having the highest deceased donor rate in the UK at 27.1 donors per million population, compared to 18.4 in Scotland.

In 2011, before he was justice secretary, the SNP MSP raised a motion in parliament, calling on the Scottish Government to back the change to increase the number of transplants and it received cross-party support.

Ten years later on March 26, after a failed bill led by former Labour MSP Anne McTaggart, a campaign by the Herald’s sister paper the Glasgow Times and a lengthy battle to win over the public it will become law.

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From March 26, anyone who has not registered an objection will be considered an organ donor.

The BMA, which represents doctors, say the critical change is that the wishes of the individual are prioritised. Specialist nurses involved in organ donation in Wales say the change has led to less instances where relatives veto approval,  kidney doctors in Scotland say this still occurs in 50% of cases.

The number of people who have ‘opted out’ in Wales has remained stable at an expected 6% in the six years since the change was introduced. 

Dr Sue Robertson, who treats patients with kidney disease, has long campaigned for the change on behalf of the BMA.

“It’s taken a long time,” she reflects. “I will be celebrating on March 26 because I think the change in legislation can only bring about more transplants and I think it is the right thing to do.

“We have been impatient for this but we have finally got there. Anne McTaggart’s bill fell a the committee stage and there were some problems with that bill which we felt could be sorted out through parliament but it turned out not to be. 

“It will increase the number of organs for transplant but crucially it’s all about respecting the individual’ autonomy and wishes about what happens to their body after their death.

“We know from all the research that nine out of ten people when they are surveyed want their organs to be donated after death and we know that this doesn’t happen. We only get family consent in just about 50% of cases.

“Those peoples’ views and wishes will be respected now and there are really important safeguards in there as well. 

“And we know some people will opt out and that’s respecting their wishes too. And if we look to Wales, 6% of people have opted out and that is what we would expect.

“They have had their legislation for five years and that number has stayed quite stable and that’s the sort of level you would expect when you survey people.”

Scots actress Nicola Roy says she will remain eternally grateful to the organ donor and family who gave her ten more years with her mother.

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Marilyn Roy’s liver transplant in the mid-90s was considered one of the most successful carried out at the time in Scotland. She later went on to front the Scottish government’s organ donation campaign.

The 35-year-old tries not to dwell on the thought but every so often she wonders if her mother might be alive today, had the second transplant come sooner. Like the majority of families affected by transplant surgery  it is the reason why she supports an opt-out system.

Her mother had Primary Biliary Cholangitis, a type of liver disease where the immune system mistakenly attacks the bile ducts, causing bile to build up in the liver.

“I was quite sheltered the first time mum became ill,” said the TV and theatre  actress,” because I was young but I was aware that my mum was unwell. She was put on the transplant list and was given a transplant when I was eight years old.

“She was quite honest about it, in that she told us what we needed to know without worrying us. 

“For the next ten years she lived a relatively normal life and we were just so thankful. She was asked to be the face of the organ donor campaign, which she was so happy to do.”

Nicola’s mother was put back on the transplant list when her condition worsened, nine years after the transplant.

“I think mum probably knew this would happen but didn’t say anything. The second time I was 17 and I remember saying to mum that I wanted to play an active part in the process.

“It’s a really desperate and fearful place, waiting. Every day you and your family are acutely aware that time is lessening.I used to go through and check that she was still alive because I was convinced she wouldn’t make the night some nights.

Nicola, who has a younger sister and older brother, says her mother waited much longer the second time and was “much sicker”.

“Unbeknown to my mum I found out that a hospital in London had started to do live liver donation which was not something that was being done in the NHS at that time. It was really just for wealthy, foreign patients.

“I got the phone number of a surgeon - I must have been pretty gallus - I phoned and I got through and begged him to consider me as a live liver donor.

“I don’t know what I said but I must have said enough because he agreed.. My mum was horrified and her surgeon said he would consider it as a last option.”

Before this could progress and around nine months after being placed on the list a match was found. However this transplant did not go as well as the first. She contracted two infections and died in intensive care.

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“My mum was such a loss to all of us but I do remain eternally grateful to the two families who saved my mum’s life then gave her the chance of a second time. I don’t think I would be the person I am without knowing my mum for those ten years. I wouldn’t have very many memories of her.

Far more people’s wishes are not going to be respected

“I suppose I always have a question...it’s natural to wonder would the outcome have been different if she had receive the transplant quicker, which is why I’m so supportive of the opt-out system because it will give families more hope of survival.”

Dozens of European countries already operate an opt-out transplant system and Wales became the first UK country to make the change on December 1, 2015, followed by England last year.

Welsh Health Minister Vaughan Gething says he is proud of that legacy.

“There were a lot of groups who weren’t supportive and were worried that this was essentially about taking from people as opposed to the donation being a gift. 

“Yet actually the work we did, the time we invested listening to those fears and concerns, we haven’t  had the level of concern that was being talked about and I think that’s a real success.

“It does show that you can change the national debate and the culture around donation.

The lesson to learn is not just getting it right to pass legislation but to keep on talking about it afterwards. The families of people who have been donors - the overwhelming feeling is that it has given them great comfort to see that that they have helped others to live a life they wouldn’t otherwise have had and I think that re-enforces that it is still a gift.

“We’ve seen donation rates improve, we’ve seen more donors coming forward, we think that is a combination of the system itself and actually because there is such greater awareness of what the law says.

He said specialist nurses had also reported that it was now easier to broach the difficult subject of organ donation with families.

“The fact it starts off positively, is there any reason why this shouldn’t happen makes the conversation so much easier to have. I’m really proud of what we’ve done.”

Dr Sarah Chan, an expert in medical bioethics, at the University of Edinburgh believes the UK public might not have been ready for the change 10-15 years ago but says ethical discourse has evolved to the point of acceptance.

“For quite a long time the resistance to introducing an opt-out system was based on this fear of what happens if someone becomes an organ donor who didn’t want to be," she says.

“I think the practice around organ donation as well as the opt-in system - if you look at both of those that puts the lie to that ethical reasons.

"When we have an opt-in system it would still often be the case that had someone had opted in and said explicitly that they want to be an organ donor and their families objected, so the autonomous wishes of people were already not being respected.

“Even though people might not have signed up to be on the organ donor register we know from qualitative and qualitative research that quite a lot of people want to be organ donors but only 20% were signed up so actually if you look at an opt-in system versus an opt-out system a system where you have to explicitly register or you will not be a donor, or even that you are registered and your family objects - far more people’s wishes are not going to be respected.”