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Five years ago, Sergio Cobos was just trying to stay alive. He had struggled with kidney disease for years, and things were getting worse.
His legs filled with fluid and he suffered from cramps. A 36-year-old athletic man, he should have been physically fit. But now he has struggled to climb the stairs.
Then everything changed – he had a kidney transplant. Today, while wandering in a botanical greenhouse in a park of La Chopera, on the Manzanares River in Madrid, he looks healthy and relaxed, wearing a bright tracksuit and sneakers. .
When Cobos's doctor told him that his kidney disease had reached the stage where a transplant or dialysis was needed, he asked his friends and family if any of them would offered a kidney as a living donor. In all, 16 people said yes.
"My mother was destined to donate to me and she was the most compatible," he says through a translator, "but suddenly in the list [the donor] there was Someone He had been on the waiting list only for 20 days
All he knows about the person who saved his life, that is, that he was not there. she was a 10-year-old Madrilenian older than him and died of a stroke.
That a highly compatible deceased donor is available as well as many willing living donors, including members of the family, perhaps reflects something that makes Spain a very special country: it directs the world in donating organs.And by far.
Figures released for 2017 reveal that 2,183 people in Spain became organ donors last year after their deaths. That's 46.9 per million people in the population (pmp) – a standard way of measuring the donation rate in a country.
The closest competitor to Spain is Croatia, with 38.6 pmp (2016). He has maintained his clear leadership position over the past 26 years. In a press release, the Spanish National Transplant Organization confidently describes the country as " Unbeatable " – unbeatable.
In trying to explain the success of Spain, it is the system "opt-out" (or presumed) deceased organ donation that may be cited more often than anything else. Exclusion means that a patient is presumed to consent to organ donation even if he has never registered as a donor.
Countries that do not have such a system often focus on amending the law as a key way to increase donations. Lawmakers in Britain are currently deciding whether the country should go from opt-in to opt-out like Spain.
This is an attempt to correct a major difference between the United Kingdom and Spain: the refusal rate of potential donors or their families by consenting to the donation. The family refusal rate is still significantly higher in England than in Spain, at 37% against 13%.
The tantalizing price that awaits any country that succeeds in increasing donation rates is clear: better living conditions for thousands of people. The impact of the 2,183 donors who died in Spain last year, for example, is staggering.
They performed 5,260 transplant surgeries, including more than 3,200 kidney transplants and 1,200 liver transplants. There were 360 lungs and 300 heart transplants. But will the change in the law in countries that do not have an opt-out system have the desired effect?
At the University Hospital of La Paz, north of central Madrid, Abderrazzak Lamjafar sits in a playroom. Her 12-year-old daughter is nearby in the room, having recently received a liver transplant. It's nap, so the game room is deserted.
Lamjafar puts his hands on the small table in front of him. His daughter, he says, was initially diagnosed in Morocco. "They said that there was something wrong with her liver and that they were not experts and could not cure her," he says through D & # 39; s. 39, a translator. "They told me to take her home, to have her eat" Some samples for medical examinations were taken, but Lamjafar did not want to wait and see what could happen. was born in Spain, she was entitled to treatment
In Spain, doctors confirmed that she was suffering from acute liver failure – a type of hepatic dysfunction that can quickly put the patient in a coma if it is not treated. "When the disease occurs in children, transplantation is often essential.
After being transferred from one hospital to another, they were eventually led in an ambulance from Murcia to La Paz, Madrid, January 25, 2018. Five days later, the liver of the girl was removed and replaced by that of a deceased donor.
"She was literally almost dead before surgery, "recalls Lamjafar. the next day she woke up feeling better immediately, he said.
More than once, Lamjafar expresses gratitude to Spain itself for making all of this possible. It is clear that worry, days and nights of uncertainty, remain raw. He adds, in fact, that all the tests reserved by doctors in Morocco is still not completed.
"When the returning doctor discovered [that the transplant had already happened] he could hardly believe it," says Lamjafar. In order for transplant surgeries like this to happen, people have to recover the organs from the donors of the deceased. It is incumbent on coordinating teams in hospitals across Spain to know which patients want to donate their organs in case they die. In La Paz, this job belongs to Belen Estebanez.
Originally from Malaga, Estebanez has been working as a transplant coordinator for almost four years. This is not an easy or predictable job, she says, but it is one that she describes as "a gift".
Although Spain has a presumed nominal consent system, in practice the coordinators do all they can to find out if a patient is happy to donate before dying and to know if his or her parents or relatives are comfortable with this
A baby born with a heart outside the body survives surgery
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Vanellope was transferred to the unit of pediatric intensive care where she will remain for several weeks while she recovers
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The doctors recommended a termination of employment to Vanellope's parents because her chances of survival were so low
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Surgeons had to move the heart of Vanellope, as well as part of his stomach, into his chest
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Naomi Findlay and Dean Wilkins with their daughter
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Vanellope Hope Wilkins could be the first case of ectopia cordis successfully treated in the United Kingdom
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Vanellope was transferred to the pediatric intensive care unit where she will remain for several weeks while she recovers
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The baby was immediately wrapped up in a sterile plastic bag after birth
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The child e born with an incredibly rare disease, Ectopia cordis, in which the heart develops outside the body
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Surgeons have said that the baby's hope of survival were less than 10 percent
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Surgeons had to move the heart of Vanellope, as well as part of his stomach , in his chest
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Vanelope Hope Wilkins could be the first case treated successfully It's about 10-15 percent of parents will refuse their consent, says Estebanez – a number she would like to see fall to zero. Yet the shock of death is sometimes difficult to take into account. Estebanez remembers a patient who said that he wanted to be a donor.
After his death, his sister approved but not his wife. The medical team always respects what the family wants, she says.
These conversations are never easy. Estebanez remembers one case, a 14-month-old boy. He was playing in the park and started to feel bad, so his mother took him to a local health center.
His condition worsened and he was rushed to hospital. Once there, the doctors confirmed that he had meningitis, says Estebanez. He died shortly after.
She and her team had to ask the family if they would consent to the donation of organs – and also to the child for 48 hours, to allow antibiotic treatment to prevent it. ;infection. transmitted to transplant patients. While she speaks, Estebanez breaks down. (19659002) "I remember this conversation, with her mother holding her baby's teddy bear," she says.
On the photo ID card hanging on a cord around her neck, she placed two sticky silver stars – one on the front, one on the back. Although she remembers all the patients and families she has worked with, these stars remind her of two patients who became donors after death.
A boy was injured in the brain during a motorcycle accident. She remembers that the family agrees that the support of life is disabled. The second star is for a colleague, a neurologist who collapsed just after meeting his son at the airport. "She was suffering from a serious brain injury and wanted to donate," she explains
. Transplant coordinators are not involved in decisions regarding the destination of organs. This happens very close, however, in the walls of the National Organization of Transplants (Organizacion Nacional de Trasplantes, or ONT).
It is here that the staff communicates with the 189 hospitals in Spain that can perform organ extractions, to find out where the country's organs are available and where they are needed most. Of these 189 hospitals, 44 are able to perform transplant surgeries.
Estebanez, like all transplant coordinators in Spain, uses a database to share information with the ONT. However, they still often rely on telephone conversations too. She shows me her work phone – an old black plastic mobile beaten with big buttons. It looks about 20 years old. But he does the job
When a donor dies, all the healthy organs that he is willing to donate must be "recovered" – removed surgically. This is done quickly because, after the heart stops beating, the organs stop receiving oxygen and other nutrients from the blood.
In Spain, an outside team collects organs and transports them to patients in need. Spanish hospitals are reimbursed for recovery costs.
Organs can end up anywhere in Spain, or sometimes in neighboring countries like France, Italy and Portugal. The ONT decides where organs should go, where they are needed most and where they can be reliably transported over time.
A few hundred meters from the University Hospital of La Paz, the ONT is surprisingly modest. a suburb of Madrid. And it's very calm. I am told that there is only about thirty people at a time.
In a long corridor on the upper floor is the coordination center itself – a simple room with a handful of desks and a thick network of colors. cables suspended from the ceiling. There are four women working on the computer. Every decision to offer a donor organ to a transplanted patient goes through these people.
One of them, a former nurse named Sara Sanchez, points to a page of her office – a list of the most urgent cases in the country. this very moment. Five children are waiting for transplants with "zero emergency" status. Sánchez explains that this means that if they do not receive a transplant in the next 48 to 72 hours, they will die.
Whenever a hospital coordinator calls a new donor, the ONT staff must get the information he needs. find a compatible recipient. For example, the donor's organ must have a size that allows it to enter the recipient's body and must also come from someone with appropriate blood types and tissues.
With some organs that can be adapted or partially given, the size does not allow it There is always a great importance – an adult can give a part of his liver, if he is alive, to a child, for example. And the organs of deceased children can sometimes be given to adults.
The ONT database may indicate a potential match – someone in the country who might need that heart, lung, pancreas or kidney. can be a real challenge. Sanchez explains that a heart can last only four hours out of the body, a liver up to eight hours, the pancreas only seven. The kidneys last longer – maybe as much as one day [19659002] But for organs that are rapidly deteriorating, if the catcher is away, the ONT may need to schedule a private jet.
Sanchez shows me two old cards on the wall. There are colored pins revealing where in the country various types of transplant surgery can be performed. The other map shows local airports. Some are military, others are labeled as "dangerous", which means that they are exposed to dangerous weather conditions
In case of emergency, the team must be aware places where security risks may delay carriers and organs. I ask if there is pressure on the staff to keep the organ donation rate at a high level – given Spain 's continued success in this area. Sanchez says the pressure comes only from knowing that patients are in need. But as I ask, I notice one of his colleagues in the background listening. She smiles, knowingly.
The person who is responsible for all planning and logistics organization here is Beatriz Dominguez-Gil, the director of the ONT. She has held this position since May 2017, when her longtime predecessor, Rafael Matesanz, retired. He directed the ONT from 1989 to 2001 and from 2004 to 2017.
Dominguez-Gil says that Matesanz designed the Spanish model and describes it as a "visionary". The model involves hospitals with trained coordination teams that manage potential donors in intensive care units and a central authority that decides where the donor's organs end.
Although the opt-out was introduced in Spain in 1979, the introduction of ONT a decade later, donation rates have really started to improve. After only a few years of operation of the ONT, Spain has become the country with the largest number of organ donors per million inhabitants.
Nevertheless, countries without an opt-out system continue to focus on amending the law as a key way to increase donations.
In the comments to Toronto Star in 2013, Matesanz made an interesting point: take the time to introduce the possibility of donation of organs to relatives of a patient makes it much more likely that they will consent in the event of death. That's why these intensive care coordination teams are so important.
These are public relations for the donation of organs – to the point where the case really needs to be done. Importantly, senior coordinators are still physicians, though they may have nurses on their team. This is so that any clinical issue regarding organ viability or the patient's health is properly evaluated.
Spain has spent money on this effort, training more than 16,000 medical professionals in organ donation and transplantation procedures. based. And since 1992, Spain's position as world leader has remained unbroken.
"It has become something that makes the pride of Spanish society," says Dominguez-Gil. . For kidney patients, for example, the cost of long-term dialysis exceeds that of transplantation. Five years of hemodialysis, which uses an artificial kidney outside the body to filter blood, costs more than £ 160,000 (£ 142,000) per patient than a transplant.
Performing thousands of kidney transplants a year and preventing dialysis, the health care system saves twice as much as it spends for all solid organ transplants
A major obstacle to maintaining high donation rates is an otherwise positive development in modern societies: a decrease in mortality due to transplants. road deaths are becoming less common. As in many Western countries that have adopted strict seat-belt laws, the number of people killed in road accidents in Spain has fallen in recent years. Deaths among young road users decreased more than for other age groups.
Spain, like other countries, therefore had to be more and more creative in identifying other sources of donor organs. For example, it is more and more common to find donors in their 70s, 80s and, in some cases, even in their 90s. The oldest liver donor registered in Spain in 2017 was 91, a liver donor.
Dominguez-Gil recognizes that survival rates will never be as good for patients receiving older organs as those receiving younger organs. But the results are still "appropriate", according to an article published by the ONT.
A recent study by the Catalan Renal Registry Committee estimated that kidneys of donors aged 75 or older had continued to function well in their new hosts. Ten years in two-thirds of cases
The authors conclude that although this is much better than keeping patients on dialysis, the risk of donor organ failure is "significantly" higher when the kidney comes from the donor. a person 75 years of age or older. 19659002] Health services are not only responsible for monitoring patients who can become donors after death – they must also be able to determine exactly when death occurs.
In fact, it is partly the rise of survival equipment and organ transplantation techniques after death in the 1960s that gave rise to a somewhat academic discussion: when does death really occur?
There are two main categories of death: brain death and circulatory death. But even these have their complications.
In most of Europe and the United States, "total brain death" is the key – when the loss of all brain function is observed. In the UK, however, a different formulation is used: "brain death". This is rather to confirm that no permanent brain function suggests consciousness.
Due to improved medical practices, brain death in Spain is becoming less common. However, hospitals continued to find organ donors in various ways
. For example, some have developed "pathways of care" for patients with, for example, life-threatening nervous system diseases, so that they can
If their treatment pbades to end-of-life care, it is then common to consider the potential of these patients to become organ donors. With the consent of their family, doctors can then offer them for organ donation after death.
Another group of patients who become more and more organ donors, according to ONT, are those who have suffered circulatory death. stopped functioning properly
The difficulty with circulatory death is that organs must be recovered very quickly after the patient's heart has stopped beating
There are two types of donation after death circulatory. One is the uncontrolled donation after circulatory death (uDCD) – when a patient has died suddenly, say of a heart attack outside the hospital.
uDCD is particularly difficult, says Dominguez-Gil. The medical team must be available at the hospital within 20 minutes of learning from the arrival of a prospective donor of the UDCD, regardless of the location. Time of day or night. "So it's a very complex program that requires a huge personal and professional commitment."
Spain has always managed to accommodate 99 of these donors last year.
Circulatory death can also occur under more controlled circumstances – for example, support for the patient's life is extinguished. In terms of the types of donations in the country, Spain has had the most success in increasing the number of these controlled donations after circulatory death (CDD).
In 2017, there were 473 donors in the country, compared with just five 2011.
British figures in this area are impressive – with 584 DCD cases (controlled and uncontrolled) in 2016-17. The country is clearly capable of performing some of the most delicate transplants. But, on the whole, this crucial fact remains: Spaniards and their families are generally much more likely to consent to donation than the British in the UK.
When I ask what advice Dominguez-Gil would give to countries like England Regarding the improvement of donor rates in general, she insists on the need to ensure that intensive care can become a donor in the routine of his work
"Because it is also the quality of intensive care". she says. She also stresses that continuing education of professionals in managing this issue is essential.
Importantly, it leaves out the idea that legislative upheavals will be transformative. "I would not do much to change the law," she says. "We know that the key to success is elsewhere."
Following the example of Spain is certainly possible. According to Dominguez-Gil, Croatia contacted the ONT several years ago to seek advice and then "reproduce completely" the Spanish system
A 2013 article on the success of Croatia, which includes an increase in number of donors per million inhabitants. 30, does not openly recognize the Spanish influence – instead the Croatian authors refer to the "Croatian model". But striking similarities to the longstanding system in Spain speak for themselves.
Other countries adopt different approaches. The Netherlands has recently pbaded an opt-out law that automatically makes all potential organ donors dead after death, unless they explicitly declare their desire not to have it. To be
. deceased did not want to be a donor.
Dominguez-Gil hesitates at the idea. In comments to the Spanish press recently, she said that a strict opt-out regime could have a negative effect and suggest to citizens that the state is exercising excessive control in order to reap more organs.
The Netherlands will certainly want to avoid what happened in Brazil in 1997. A strict new exclusion law had to be repealed the following year after charges of arrest by government bodies. But it is still difficult to know which strategies will work in one country over another.
And that's a key point here. Spain may well be a global leader, but it is the infrastructure and culture of a country that will likely be the main determinant of somebody 's ability. another to imitate the Iberian example.
Adnan Sharif, Renal Consultant at Queen Elizabeth The Birmingham Hospital may be somewhat jealous of what Spain has managed to do in terms of organ donor rates.
"Obviously, they have a fantastic system," he says. Like Dominguez-Gil, he thinks too much time is spent wondering if England should become an opt-out nation.
Notably, Wales changed its own law to presumed consent in 2015 – but a significant increase in donations did not follow. . And yet, there is strong support among politicians in England to make the same change.
In a recent parliamentary debate on the bill, Julie Elliott, the Labor MP for Sunderland Central, spoke about the case of her 36-year-old daughter, who was diagnosed with kidney disease in 2016 and who receives now dialysis.
"What has happened to us in the last 18 months could happen to anyone. Young or old, rich or poor, there is no differentiation when such things happen, and they emphasize the reality of the need to change the law for a reputable consent, "she said.
Sharif says to be on the organ The registry of donors may not be as crucial as some people think. He points out that in the last few years about half of the status of British donor registrants was not known at the time of death.
Au lieu de cela, ce sont les conversations de fin de vie entre médecins, infirmières et familles qui
L'opinion de Sharif est que tout changement législatif en Angleterre pourrait entraîner une hausse initiale des dons, mais cela pourrait être attribuable en grande partie à la publicité et aux reportages médiatiques badociés au changement – et non au changement de la loi elle-même.
Alors qu'est-ce qui pourrait aider? Il pense que tenter d'augmenter la volonté des gens de devenir des donateurs pourrait être beaucoup plus puissant.
Les gens au Royaume-Uni ont actuellement l'impression que le don d'organes est une chose exceptionnelle et très altruiste à faire, dit-il. En regardant autour, il est difficile d'être en désaccord – "Be a hero" est le titre d'une campagne promotionnelle du NHS. Une autre affiche dit: "La vie est incroyable. Pbadez le. "
La décision de faire un don est donc encadrée comme spéciale, même anormale, dit Sharif. "Je pense que nous devons être francs à ce sujet", ajoute-t-il. "Changez simplement cela et dites:" Il est normal que vous soyez un donneur d'organes et si vous choisissez de ne pas en être un, vous êtes exceptionnel mais pas dans le bon sens, d'une mauvaise manière. "»
En faisant appel à l'altruisme des gens, nous devrions plutôt nous attaquer à leur intérêt personnel inné, dit-il. En 2010, Israël a lancé un programme qui accorde la priorité aux donneurs vivants, aux membres de la famille des donneurs décédés et à ceux qui sont inscrits depuis longtemps sur le registre des donneurs (19659002). Il fait remarquer que, si vous demandez à une salle pleine de gens s'ils accepteraient un organe provenant d'un donneur dans une situation de vie ou de mort, pratiquement tout le monde dirait oui. Mais peut-être que tous ne diraient pas qu'ils aimeraient s'inscrire eux-mêmes comme donneurs d'organes à ce moment-là.
Cela se rapproche d'un point avancé par Dominguez-Gil. Faisant écho aux découvertes faites ailleurs dans le monde, elle dit que les calculs de l'ONT suggèrent qu'il est beaucoup plus probable que quelqu'un ait besoin d'un organe donneur à un moment de sa vie plutôt que de mourir dans des conditions permettant le don de ses propres organes.
Sharif pense que tout dégoût à l'idée de devoir faire un don après la mort est une «hypocrisie» qui doit être contestée. Dans certaines communautés, cependant, il y a des raisons plus spécifiques de ne pas vouloir donner.
Les musulmans, par exemple, peuvent citer des érudits religieux qui ont interdit le don d'organes – bien que certains croient qu'il est compatible avec la foi. Et la réticence à donner des organes après la mort pour des raisons religieuses a été documentée dans certaines communautés noires et asiatiques en Grande-Bretagne. Changer ces croyances profondément ancrées n'est pas facile.
Mettant cela de côté, je suggère que les gens trouvent troublant de penser qu'ils ne reçoivent pas d'organe de donneur en raison d'une décision personnelle de ne pas s'inscrire sur un registre des années plus tôt. «Je crois que si vous croyez en la transplantation, vous devez croire au don d'organes», dit Sharif
. Il n'y a peut-être rien de fondamental qui empêche les Britanniques d'améliorer leurs taux de dons. Une étude intrigante de l'ONT en 2013 a révélé que les expatriés britanniques en Espagne étaient beaucoup plus susceptibles de donner un organe que leurs homologues dans leur pays d'origine – en fait, le taux de don était comparable à celui des Espagnols natifs.
Selon Lorna Marson, présidente de la British Transplantation Society (BTS), un renforcement de la publicité autour d'un changement législatif pourrait ne pas être une mauvaise chose.
Marson pense qu'une sensibilisation accrue a un impact sur le nombre de personnes désireuses de devenir des donneurs et que cela est positif, indépendamment du fait qu'un changement légal d'opt-out aura un effet direct à long terme. D'une manière ou d'une autre, les chiffres britanniques s'améliorent doucement.
Marson dit qu'en janvier 2018, les dons d'organes du Royaume-Uni étaient à leur plus haut niveau jamais atteint. Pour l'année 2013-2014, le taux de donneur d'organes décédé était de 20,6 pmp; en 2016-17, il est pbadé à 21,6 – bien que ce soit encore moins de la moitié du niveau atteint en Espagne.
Mais le NHS du Royaume-Uni pourrait-il faire face à une augmentation du taux de donneurs
? pays est juste en ce moment, nous sommes étirés, nous nous sentons à notre capacité [already] avec cette augmentation du don d'organes et de la transplantation que nous avons vu au cours des derniers mois ", dit Marson.
Elle ajoute que le 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.
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 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 bad.
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.
This article was first published by Wellcome on Mosaic and is republished here under a Creative Commons licence
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