This site is intended for Healthcare Professionals only

Gift of life

Population Health bookmark icon off

Gift of life

Wales recently changed to a “presumed consent” system for organ donors, and the rest of the UK is deciding whether to follow its lead

Consent is an emotive word, all too often having negative connotations. But for a certain group of people, the term is a lifesaver: an individual who has given consent for their organs to be donated upon their death can transform the lives of up to nine people.

However, there are more people in need than there are donated organs. Figures from NHS Blood and Transplant (NHSBT) show that in 2016-17, some 3,714 organ transplants took place from deceased donors in the UK, with another 1,041 transplants performed from living donors. But the number of people needing such surgery held steady at just under 6,500; roughly this means that that around three people every day die as a result of the shortfall. NHSBT states: “Last year 3,144 families were asked to agree to organ donation. Although 1,972 supported donation, 1,172 families said no.” 

And that’s why the Government has launched a consultation on changing the current system in England.

To opt in or out?

At the moment, it is up to individuals in England to sign up to the organ donor register – regardless of their age or any medical conditions they may have, for the most part – and talk to their families so, when the fateful day comes, their loved ones know of their wishes and can give consent. This is known as an “opt-in system”.

An alternative – and something that is done in other countries, including Wales since 2015 – is an “opt-out system” under which everyone is considered a potential donor unless they have logged their preference to not donate any organs after their death. Unsurprisingly, NHSBT is in favour of the Government’s announcement to ask the public what they think about moving to such a system, saying: “In countries with mature opt-out systems, typically more families support donation. In Spain, for example, fewer than 20 per cent of families refuse to donate.” Scotland conducted a similar consultation last year and is currently considering the responses, while Northern Ireland is seeking views on “presumed consent”, as it is sometimes termed, as part of a series of measures in which donation levels can be increased from the current level of 60 per cent of potential cases to 80 per cent – a UK-wide target – by 2020.

Will it really make a difference?

Lorna Marson, clinical lead for renal transplantation in Edinburgh and president of the British Transplantation Society (BTS), says: “The million dollar question is whether the proposed change will make a significant difference to organ donation levels in this country. What we can say is that there is no strong evidence from international data supporting this. But I firmly believe that the consultation is having a positive effect in that it is raising debate and discussions at all levels, the most important of which is individuals talking to their families about whether or not they would like to donate their organs when they die.”

Lorna continues: “It is important to note that any change is likely to be a ‘soft’ opt-out system, which means that the person’s family will be consulted and will have the right of veto if they feel very strongly about it. And that’s right, because ultimately it is a devastating situation they are in when asked to make this decision. But if their loved one has expressed their desire to donate their organs, it makes it easier for them to say yes because they know it is what they would have wanted.”

Spanish steps

Spain is often held up as an exemplar of how successful an opt-out system can be, and rightly so: it has one of the highest donation levels in the world at over 40 deceased donors per million people (by comparison, the EU average was 19.6 and the US 26.6 in 2016). Pete Storey, director of communications at Kidney Research UK, comments: “While the opt-out system is definitely a factor, much of Spain’s success comes from how much they have invested, by setting up an agency within the Ministry of Health that is solely focused on organ transplants and having professionals in hospitals whose role it is to identify donation opportunities, not just in intensive care units but [in] accident and emergency units and other wards.”

Pete adds: “Spain has also widened its donor pool, for example by accepting older people – around 10 per cent of donations are from over 80s. This might sound odd, but organs are not necessarily for life: the immune system starts attacking the donor organ as soon as it has been transplanted, and because it is constantly under siege, it basically wears down. For example, a transplanted kidney usually lasts around 10 to 15 years, but ask a patient on dialysis if they would take that, and they’d probably say yes.”

Overcoming obstacles

While many people are happy to donate, there are certain groups in which rates remain stubbornly low in the UK. One of these is children, with an article published in the highly-regarded medical journal Archives of Disease in Childhood highlighting how, in 2015-16, one in four cases involving paediatric intensive care units wasn’t even identified as a potential donor and/or the option wasn’t raised with families.

Lorna states: “Child deaths are often sudden, unexpected and traumatic for everyone involved, and historically healthcare professionals who care for these patients have been reluctant to approach families, considering it a step too far, But however difficult it is, work needs to be done to address this. One approach could be to cover the topic in school, as it is in Scotland in citizenship classes at secondary level. But it could be brought up – appropriately, of course – at primary school. This, in turn, might stimulate discussions at home, so if something does happen, the family knows that the child would have wanted his or her organs
to be donated.”

Another group in which donation levels have not budged hugely is within black, Asian and minority ethnic (BAME) communities. An NHSBT report states that these groups represent 11 per cent of the UK population, but 34 per cent of the total number of patients on the waiting list for a kidney transplant, and only 6.8 per cent of those on the organ donor register. Pete explains: “There are many factors involved in matching donors and recipients, but ethnicity certainly plays a part, and is why BAME patients wait longer for kidney transplants than white patients.”

This is not a simple imbalance to redress, says Pete: “There are cultural and religious barriers, and really the way to tackle this is to work with these communities so they understand the issues, and talk to individuals and their families and religious leaders about it. For example, there is a school of thought in Islam that organ donation is not permitted. But our experience through running projects within these communities, for example in Birmingham and Tower Hamlets, is that it’s actually about encouraging people to make an informed decision by talking to their imam or other scholars about the particular teachings they follow.”

And this is where pharmacy staff have a vital role to play. By displaying information about organ donation – a good hook could be World Kidney Day on 8 March – being able to have conversations on the topic with anyone who walks in, and knowing where to signpost people for answers to the questions relevant to them. Support staff can stimulate debate, encourage families to talk to each other about how they feel about donating their organs after they die, and – in a very small way – be part of something that has the potential to transform lives.

Case study

At just 18 years of age, Sarah Harwood became unwell, and within a few months was diagnosed with end stage kidney failure. She now says the difference that an organ transplant can make simply cannot be over-estimated

“Once the doctors had worked out what was wrong with me – and I was in such a bad way that if my parents had taken me in even a day or two later, I probably would have died – I was put on emergency dialysis, and this was repeated almost daily for around two weeks. After that, I had to have dialysis three times a week, and it was pretty miserable as although it was keeping me alive, I reacted pretty badly to it and was put on a lot of medication.

“Around eight or nine months later, we got a call saying that a kidney had been found. To be honest, it is all a bit of a blur as I had the operation but the kidney didn’t start working straightaway so I needed two more lots of dialysis and a couple of blood transfusions. But after a week, I started feeling better and the blood tests showed that the kidney was working.

“It’s been 11 years now, and while it is still a balancing act – at times my immune system has been so suppressed by the anti-rejection medication that I have got literally every infection going, from conjunctivitis and colds to glandular fever and viral meningitis – the fact that I am lucky enough to have received a donated kidney has meant I can finish university, hold down jobs and live a much more normal life than if I was still having dialysis all the time. 

The only things you find out about your donor are their age and gender, so I know mine was an 11 year old girl. I know her parents must have been devastated when she died but they did an amazing thing in giving me and others a chance to live, and I will always be so incredibly grateful for that.”

Around three people every day die as a result of the shortfall

Copy Link copy link button

Population Health

Share: