UPDATE: On 5 August 2018, the government announced plans to change the law on consent for organ donation in England. The new ‘opt-out’ system is expected to come into effect in 2020. The legislation, known as Max’s Law, will mean that people will be presumed to consent to donating their organs unless they register their decision to opt-out on the NHS organ donation register.
Five years ago, Sergio Cobos was just trying to stay alive. He had battled with kidney disease for years, and things were getting worse. His legs would fill with fluid and he was plagued by cramps. A previously athletic man of 36, he should have been in sound physical shape. But now he struggled to get up the stairs.
Then everything changed – he had a kidney transplant. Today, as he strolls out of a botanical glasshouse in a park by La Chopera, on the Manzanares river in Madrid, he seems healthy and relaxed, dressed in a bright tracksuit and trainers.
When Cobos’s doctor told him that his kidney disease had reached the point at which a transplant or ongoing dialysis was necessary, he asked his friends and family if any of them would offer him a kidney as a living donor. In all, 16 people said yes.
“My mum was meant to be donating for me and she was the most compatible one,” he says through a translator, “but suddenly within [the donor] list there was someone who was even more compatible.” He had been on the waiting list for just 20 days.
All he knows about the person who saved his life is that she was a woman from Madrid who was ten years older than him and who died from a stroke. That a highly compatible deceased donor was available as well as so many willing living donors, including family members, is perhaps a reflection of something that makes Spain a very special country indeed: it leads the world in organ donation. And by quite a margin.
Figures published for 2017 reveal that 2,183 people in Spain became organ donors last year after they died. That’s 46.9 per million people in the population (pmp) – a standard way of measuring the rate of donation in a country.
Spain’s closest contender is Croatia, with 38.6 pmp (2016). It has maintained its position as the clear leader for the past 26 years. In a press release, Spain’s National Transplant Organisation confidently describes the country as “imbatible” – unbeatable.
When attempting to explain Spain’s success, it’s the ‘opt-out’ (or presumed consent) system for deceased organ donation that is perhaps cited more often than anything else. Opt-out means that a patient is presumed to consent to organ donation even if they have never registered as a donor.
Countries that don’t have such a system often focus on changing the law as a key way to increase donations. Lawmakers in England are currently deciding whether the country should change from opt-in to opt-out like Spain. This is an attempt to redress a major difference between the UK and Spain: the rate of refusal of potential donors or their families in consenting to donation. The rate of family refusal is still significantly higher in England than Spain, at 37 per cent versus 13 per cent.
The tantalising prize awaiting any country that does manage to increase donation rates is clear: better lives for potentially thousands of people. The impact Spain’s 2,183 deceased donors had last year, for example, is staggering. They made 5,260 transplant surgeries possible, including more than 3,200 kidney transplants and 1,200 liver transplants. There were 360 lung and 300 heart transplants. But would changing the law in countries that don’t have opt-out systems have the desired effect?
Organ donation can save lives, but are religious taboos potentially limiting the number of organs available?
Working with families
In La Paz University Hospital, north of Madrid’s city centre, Abderrazzak Lamjafar is sitting in a playroom. His 12-year-old daughter is nearby on the ward, having recently received a liver transplant. It’s nap time, so the playroom is deserted.
Lamjafar rests his hands on the little table in front of him. His daughter, he says, had originally been diagnosed in Morocco. “They said there was something wrong with her liver and that they are not experts and are not able to treat her there,” he says through a translator.
“They told me to take her home, get her to rest and eat well.” Some samples for medical tests were taken, but Lamjafar didn’t want to wait and see what might happen. Since his daughter had been born in Spain, she was entitled to treatment there. In Spain, doctors confirmed that she was suffering from acute hepatic failure – a type of liver dysfunction that can quickly put the patient into a coma if left untreated. When the disease occurs in children, transplantation is often essential.
After being referred from one hospital to another, they were eventually driven by ambulance from Murcia to La Paz in Madrid, arriving at 3am on 25 January 2018. Five days later, the girl’s liver was removed and replaced with one from a deceased donor.
“She was literally almost dead before surgery,” remembers Lamjafar. But the next day, she woke up feeling immediately better, he says.
More than once, Lamjafar expresses his gratitude to Spain itself for making all of this possible. It’s clear that the worry, the days and nights of uncertainty, remain raw. He adds, in fact, that the set of tests booked by doctors in Morocco have still not been completed.
“When the doctor back home found out [that the transplant had already happened] he could hardly believe it,” Lamjafar says.
In order for transplant surgeries like this to happen, people must retrieve donor organs from deceased people. It falls to coordinator teams in hospitals across Spain to know which patients want to donate their organs in the event that they die. At La Paz, that job belongs to Belén Estébanez.
Originally from Malaga, Estébanez has been working as a transplant coordinator here for nearly four years. It’s not an easy or predictable job, she says, but it is one she describes as “a gift”.
Despite Spain having a nominal presumed consent system, in practice coordinators do all they can to find out whether a patient is happy to donate before they die, and also whether their relatives or loved ones are comfortable with this.
Around 10–15 per cent of relatives will refuse consent, says Estébanez – a number that she would like to see fall to zero. Still, the shock of death is sometimes hard to reckon with. Estébanez remembers one patient who said he wanted to be a donor. After he died, his sister approved but his wife did not. The medical team always respects what the family wants, she says.
These conversations are never easy. Estébanez recalls one case, of a 14-month-old baby boy. He was playing in the park and started to feel unwell, so his mother brought him to a local health centre. His condition worsened and he was taken to hospital. Once there, doctors confirmed he had meningitis, says Estébanez. He died shortly after.
She and her team had to ask the family if they would consent to organ donation – and also for the child to be kept on life support for 48 hours, to allow for antibiotic treatment to prevent the infection being passed on to transplant patients. As she talks, Estébanez breaks down. She wipes a tear from her cheek.
“I remember that conversation, with his mother holding her baby’s teddy bear,” she says.
On the photo ID card hanging on a lanyard around her neck, she has placed two sticky silver stars – one on the front, one on the back. Although she remembers all of the patients and families she’s worked with, these stars remind her of two particular patients who became donors after death.
One was a boy who suffered a brain injury in a bad motorbike accident. She remembers the family consenting to life support being turned off. The second star is for a colleague, a neurologist who collapsed just after meeting his son at the airport. “He suffered from a very severe brain injury and wanted to donate,” she says.
Transplant coordinators aren’t involved in the decisions about where organs will end up. That happens very nearby, however, within the walls of the National Transplant Organisation (Organización Nacional de Trasplantes, or ONT). It’s here that staff communicate with the 189 hospitals in Spain that can perform organ extractions, to find out where in the country organs are available and where they are most needed. Of those 189 hospitals, 44 are able to carry out transplant surgeries.
Estébanez, like all transplant coordinators in Spain, uses a database to share information with the ONT. However, they still often rely on phone conversations too. She shows me her work phone – an old, beaten-up black plastic mobile with large buttons. It looks about 20 years old. But it does the job.
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When a donor dies, any healthy organs they are willing to donate have to be ‘retrieved’ – surgically removed. This is done quickly because, after the heart stops beating, organs stop receiving oxygen and other nutrients from the blood. In Spain, an outside team collects the organs and transports them to patients in need. Spanish hospitals are reimbursed for the costs of retrieval.
Organs may end up anywhere in Spain, or occasionally in nearby countries like France, Italy and Portugal. The ONT makes decisions on where organs should go based on where they are needed most and where they can be reliably transported in time.
A few hundred metres from La Paz University Hospital, the ONT is a surprisingly modest two-storey building in a suburb of Madrid. And it feels very calm. I’m told that there are only ever about 30 people here at any one time.
Down a long corridor on the upper floor is the coordination centre itself – simply a room with a handful of desks and a thick bundle of coloured network cables hanging from the ceiling. There are four women working at computers. Every decision to offer a donor organ to a transplant patient passes through these people. One of them, a former nurse named Sara Sánchez, points to a page on her desk – it’s a list of the most urgent cases in the country at that very moment. There are five children waiting for transplants with a status of ‘urgency zero’. Sánchez explains this means that if they don’t receive a transplant within the next 48 to 72 hours, they’ll die.
Whenever a hospital coordinator calls through with a new donor, the ONT staff must get the information they need to find a compatible recipient. For example, the donor organ should be of a size that means it will fit inside the recipient’s body and should also be from someone with suitable blood and tissue types.
With some organs that can be adapted or partially donated, size doesn’t always matter so much – an adult may donate part of their liver, while alive, to a child, for instance. And deceased children’s organs can sometimes be donated to adults. The ONT’s database can flag a potential match – someone anywhere in the country who might need that heart, lung, pancreas or kidney.
But transporting a donor organ in time can be a real challenge. Sánchez explains that a heart may last for just four hours out of the body, a liver up to eight hours, the pancreas only seven. Kidneys last longer – perhaps as much as a day. But for those organs that deteriorate quickly, if the recipient is far away, the ONT may have to schedule a private jet.
Sánchez shows me two old maps on the wall. One has coloured pins revealing where in the country various types of transplant surgery can be carried out. The other map shows local airports. Some are military, some are labelled as “dangerous” – which means they are prone to unsafe weather conditions. In an emergency, the team has to be aware of places where safety risks could delay the transporters and organs.
I ask if there is ever pressure on staff to keep the rate of organ donations at a high level – given Spain’s continued success in this area. Sánchez says pressure only comes from knowing that patients are in need. But as I ask, I notice one of her colleagues in the background listening. She smiles, knowingly.
The person who is ultimately responsible for all the logistical planning and organisation here is Beatriz Domínguez-Gil, the ONT’s director. She has held the post since May 2017, when her long-standing predecessor, Rafael Matesanz, retired. He ran the ONT from 1989 to 2001 and 2004 to 2017.
Domínguez-Gil says that Matesanz conceived the Spanish model, and describes him as a “visionary”. The model involves hospitals having trained coordination teams who manage potential donors in intensive care units (ICUs) and a central authority that decides where donor organs end up.
Although opt-out was actually introduced in Spain in 1979, it was only with the introduction of the ONT a decade later that donation rates really began to improve. After just a few years of the ONT operating, Spain became the country with the most organ donors per million population. Nevertheless, countries without opt-out systems continue to focus on changing the law as a key way to increase donations.
In comments to the Toronto Star in 2013, Matesanz made an interesting point: taking the time to introduce the possibility of organ donation to a patient’s relatives makes it much more likely that they will consent in the event of death. That’s why those ICU coordination teams are so important. They are PR for organ donation – at the point where the case really needs to be made. Importantly, the lead coordinators are always doctors, though they may have nurses in their team. This is so that any clinical issues around the viability of organs or the health of the patient are properly assessed.
Spain has ploughed money into this effort, training more than 16,000 medical professionals in procedures regarding organ donation and transplantation since the ONT was founded. And since 1992, Spain’s position as world leader has remained uninterrupted. “It has become something that makes the Spanish society feel proud,” says Domínguez-Gil.
As well as saving lives, transplants save money, she says. For kidney patients, for example, the cost of long-term dialysis exceeds that of transplant surgery. Five years of haemodialysis, which uses an artificial kidney outside the body to filter blood, costs over €160,000 more per patient than a transplant. By performing thousands of kidney transplants a year and keeping patients off dialysis, the healthcare system saves over twice what it spends on all solid organ transplants.
One significant barrier to keeping donation rates high is an otherwise positive development in modern societies: a falling of mortality from causes that permit transplantation. One reason is that road traffic deaths are becoming less common. As in many Western countries that have adopted strict seatbelt laws, the number of people who die in road traffic accidents in Spain has plummeted in recent years. Deaths among young road users have fallen more than for other age groups.
Spain, like other countries, has therefore had to be increasingly creative in identifying alternative sources of donor organs. For instance, it is becoming increasingly common to find donors in their 70s, 80s and, in a few cases, even their 90s. The oldest deceased donor recorded in 2017 in Spain was 91, a liver donor.
Domínguez-Gil acknowledges that survival rates will “never be as good” for patients receiving older organs compared to those receiving younger ones. But outcomes are still “appropriate”, according to a paper published by the ONT.
A recent study by the Catalan Renal Registry Committee estimated that kidneys from donors who were 75 years old or more had continued functioning well in their new hosts for ten years in two-thirds of cases. The authors concluded that while this was much better than keeping patients on dialysis, the risk of donor organ failure was “significantly” higher when the kidney came from someone aged 75 or older.
Health services aren’t just tasked with monitoring patients who may become donors after death – they also need to be able to determine exactly when death occurs. This is less obvious than it sounds. In fact, it was partly the rise of life support equipment and techniques for organ transplantation after death in the 1960s that led to a discussion that, in a sense, had previously been somewhat academic: when does death actually occur?
There are two broad categories of death: brain death and circulatory death. But even these have their complications.
In most of Europe and the USA, ‘whole brain death’ is key – when the loss of all brain function is observed. In the UK, however, a different formulation is used: ‘brainstem death’. This focuses instead on confirming that no ongoing functions of the brain suggest consciousness.
Because of improving medical practices, brain death in Spain is becoming less common. There are various ways in which hospitals have continued to find organ donors, though. For instance, some have developed ‘pathways of care’ for patients with, for example, life-threatening diseases of the nervous system, so that they can be brought to ICUs if not already there. If their treatment shifts to end-of-life care, it’s then standard practice to consider these patients’ potential to become organ donors. With their families’ consent, doctors can then put them forward for organ donation after death.
Another pool of patients that are increasingly becoming organ donors, according to the ONT, are those who have suffered circulatory death – when the heart and lungs have ceased to function properly. The difficulty with circulatory death is that organs must be retrieved very quickly after the patient’s heart has stopped beating.
There are two types of donation after circulatory death. One is uncontrolled donation after circulatory death (uDCD) – when a patient has died suddenly, say of a heart attack outside the hospital.
uDCD is particularly challenging, says Domínguez-Gil. The medical team have to be available in the hospital within 20 minutes of learning that a potential uDCD donor is arriving, whatever time of day or night. “So it is a very complex programme that requires a huge personal and professional commitment.”
Spain still managed to accommodate 99 such donors last year.
Circulatory death can also happen in more controlled circumstances – for example, when a patient’s life support is turned off. In terms of types of donation within the country, Spain has had most success with increasing the number of these controlled donations after circulatory death (cDCD). In 2017, there were 473 such donors in the country, up from just five in 2011.
UK figures in this area are impressive – with 584 DCD cases (controlled and uncontrolled) in 2016/17. The country is clearly capable of carrying out some of the trickiest transplantations. But, overall, that crucial fact remains: Spanish people and their families are generally far more likely to consent to organ donation than Brits in the UK.
When I ask what advice Domínguez-Gil would give countries like England when it comes to improving donor rates in general, she emphasises the need make sure intensive care staff deal with the potential for their patients to become donors as a routine part of their job. “Because that’s quality of care in intensive care as well,” she says. She also stresses that continuously training professionals in how to handle this is a must.
Importantly, she waves away the idea that legislative upheaval will be transformative. “I wouldn’t be making a big effort in changing the law,” she says. “We know that the key for success is elsewhere.”
This image includes features derived from Crown copyright material, licensed under the Open Government Licence v3.0
Learning from Spain
Following Spain’s example is certainly possible. According to Domínguez-Gil, Croatia contacted the ONT several years ago to ask for advice and subsequently “completely reproduced” the Spanish system. A 2013 paper on Croatia’s success, which includes raising the country’s donors per million population figure to more than 30, does not openly acknowledge Spanish influence – instead the Croatian authors refer to the “Croatian model”. But striking similarities to the long-standing system in Spain speak for themselves.
Other countries are taking different approaches. The Netherlands recently passed an opt-out law that automatically makes all adults potential organ donors after death unless they explicitly register their desire not to be. Next of kin can, however, challenge this if they can make a plausible case that the deceased did not wish to be a donor.
Domínguez-Gil balks at the idea. In comments to the Spanish press recently, she said a strict opt-out regime may have a negative effect and suggest to citizens that the state is being overly controlling in an effort to harvest more organs.
The Netherlands will certainly want to avoid what happened in Brazil in 1997. A strict new opt-out law there had to be repealed the following year after accusations of government body snatching. But it is always difficult to know what strategies will work in one country versus another.
And that’s a key point here. Spain may well be a world leader, but it is the infrastructure and culture of a country that will probably be the biggest determiner of how well anyone else is able to emulate the Iberian example.
Adnan Sharif, a renal consultant at Queen Elizabeth Hospital Birmingham in England is, perhaps, somewhat envious of what Spain has been able to pull off in terms of organ donor rates. “Obviously they’ve got a fantastic system,” he says. Like Domínguez-Gil, he thinks that too much time is spent obsessing over whether England should become an opt-out nation.
Notably, Wales changed its own law to presumed consent in 2015 – but a big increase in donation has not followed. And yet there is strong support among politicians in England for making the same change. In a recent parliamentary debate on the proposed legislation, one Labour MP referred to the case of her 36-year-old daughter, who was diagnosed with kidney disease in 2016 and is now receiving dialysis.
“What has happened to us over the past 18 months could happen to anyone. Young or old, rich or poor, there is no differentiation when such things happen, and they highlight the reality of the need to change the law to deemed consent,” she said.
Sharif, however, says that being on the organ donor register may not be as crucial as some think. He points out that in recent years around half of British organ donors’ status on the register wasn’t known at the time of death. Instead, it was in those end-of-life conversations between doctors and nurses and families that consent was given.
Sharif’s opinion is that any legislative change in England may lead to an initial spike in donation, but that this may largely be down to publicity and media reporting associated with the change – not the change in the law itself.
So what would help? He thinks that trying to increase people’s willingness to become donors could be far more powerful.
People in the UK are currently given the impression that being an organ donor is an exceptional, very altruistic thing to do, he says. Looking around, it’s hard to disagree – ‘Be a hero’ is the title of one NHS promotional campaign. Another poster says: “Life’s amazing. Pass it on.”
The decision to donate is therefore framed as special, even abnormal, says Sharif. “I think we need to be maverick about it,” he adds. “Just change that and say: ‘It’s normal for you to be an organ donor and if you choose not to be one, you’re being exceptional but not in a good way, in a bad way.’”
Instead of appealing to people’s altruism, we should instead strike at their innate self-interest, he says. In 2010, Israel launched a scheme that when allocating transplant organs in situations of equal medical need, gives priority to living donors, family members of deceased donors and those who have long been on the donor register. Sharif likes this idea. He points out that, if you ask a room full of people whether they would accept an organ from a donor in a life-or-death situation, practically everyone would say yes. But perhaps not all of them would say that they would like to register as an organ donor themselves at that moment.
It chimes with a point made by Domínguez-Gil. Echoing findings made elsewhere in the world, she says that the ONT’s calculations suggest it is far more likely that someone will require a donor organ at some point in their life than die in conditions that allow for the donation of their own organs.
Sharif thinks any distaste at the thought of having to donate after death is “hypocrisy” that needs to be challenged. In some communities, however, there are more specific reasons for not wanting to donate. Muslims, for example, may cite religious scholars who have prohibited organ donation – though some believe it is compatible with the faith. And reluctance to donate organs after death for religious reasons has been documented in some black and Asian communities in Britain. Changing those deeply held beliefs is not easy.
Putting this aside, I suggest that people may find it unsettling to think that they may not receive a donor organ because of a personal decision not to place themselves on a register years earlier. “I think if you believe in transplantation, you know, you must believe in organ donation,” says Sharif.
There may not be anything fundamental stopping Brits from improving their donation rates. An intriguing study by the ONT in 2013 found that British expats in Spain were far more likely to donate an organ than their counterparts back home – in fact the rate of donation was comparable to native Spaniards. At the time, the ONT unsurprisingly claimed that it was Spain’s “management model” that was responsible for the difference.
For Lorna Marson, president of the British Transplantation Society (BTS), a boost in publicity around a legislative change may be no bad thing. Marson says she thinks increasing awareness does have an impact on the number of people willing to become donors and that that is positive, regardless of whether a legal shift over opt-out will have a long-term direct effect. Either way, UK figures are improving gently regardless.
Marson says that in January 2018, UK organ donations were at their highest ever level. For the year 2013/14, the deceased organ donor rate was 20.6 pmp; in 2016/17, it rose to 21.6 – though that’s still less than half the level achieved in Spain.
But could the UK’s NHS cope with an increased donor rate?
“If you speak to many transplant surgeons in the country just right at this moment, we are stretched, we are feeling at our capacity [already] with this increase in organ donation and transplantation that we’ve seen in the last few months,” Marson says. She adds that the BTS is now planning to hold a “sustainability summit” in order to start looking for ways and means to make more transplant surgeries possible.
The UK’s Organ Donation Taskforce, which produced its final reports about 10 years ago, seemed to take a leaf out of Spain’s book when it recommended that specialist nurses for facilitating organ donation be located within ICUs. This has since happened, says Marson. But whether the UK’s healthcare system is capable of accommodating further, large increases in donation is another question.
Thank you for being a donor
There are plenty of people who remind us, just by virtue of their being around, that organ donation can be an incredible gift. People such as Sergio Cobos. In the park at La Chopera in Madrid, he explains that while he respects everyone’s opinion, he personally can’t understand why someone wouldn’t want to be a donor. He tells his six children that it’s important to be generous.
When he went into hospital for his transplant in 2013, Cobos made it clear that he wanted to donate his organs should the operation not go to plan. While he was still in hospital recovering, a man only a few years older came in for dialysis and died there – a reminder of how serious kidney failure can be.
Cobos fared better. Ten days after surgery, his new kidney began to function. It was the same day as his birthday. Although he has suffered from back pain thanks to another condition, he has since recovered and now revels in his new lease of life, taking up the sports he loves again: football, running and cycling. And he began to train in athletics too, including discus and shot put – which he competed in at the 2017 World Transplant Games.
“It was a celebration of life,” he says. At one point, the athletes, all transplant patients, were introduced to the families of people who had donated their organs. “Most of us cried with gratitude,” he says. Today, Cobos promotes organ donation and is president of Deporte y Trasplante Madrid, the city’s sport and transplant society. The tracksuit he’s wearing has the group’s logo on the upper left breast.
Later, he sends me a link to a video on YouTube. He had written the lyrics to a song, he explains, which was performed on Spanish TV that weekend. A minute or so into the song, Cobos appears at the back of the flashy stage and walks forward to join the three enthusiastic male singers. The crowd claps, he smiles. He gives each of the performers a hug, and as they continue singing, a slightly emotional, shy-looking Cobos stands with them, clapping along. It’s an uplifting pop ballad and quite moving to watch. Its title is ‘Gracias por ser donante’ – thank you for being a donor.