April is Organ and Tissue Donation Awareness Month and the media will be saturated with stories about the number of people waiting for a life-saving transplant and the lack of donor organs. In the U.S. alone 18 people die each day while on the waiting list. I'm one of the lucky ones because I waited only 25 days for my lung transplant and I'll be forever grateful and thankful to my donor and donor family for giving me the gift of life. Tomorrow I head to my transplant center for my 9-year assessment. So far so good!
Spain's family bonds lie at the heart and soul of great healthcare
Spain leads the world in organ transplants, but its success in the operating theatre is matched by its holistic approach outside
Sarah Boseley , health editor
The Guardian
In the emotionally fraught business of asking families of those who have died to consider donating organs, the Spanish are world leaders. Photograph: Tino Soriano/National Geographic Society/Corbis
Looking tired, Adolfo Martínez Pérez, dressed in a white clinical coat, apologises for being late, saying he has been to see a judge. A difficult patient suing for compensation, perhaps? No. The surgeon and his fellow transplant co-ordinator, nurse Mercedes González González (her mother and father had the same surname), have just returned from witnessing the uncle of a five year-old girl sign a legal document in another part of Madrid's Ramón y Cajal hospital, declaring that he understands the consequences of donating part of his liver to his niece.
Spain has probably the best organ transplant system in the world. Its healthcare is highly regarded – it ranked seventh in the World Health Organisation's top 10 in 2000 (the UK was 18th) – and, like the NHS, it is free at the point of delivery. It has an excellent network of family doctors and a health centre within 15 minutes of every home. But when it comes to transplants, Spain is way out in front.
It is good at the headline-grabbing experimental surgery. Three face transplants of the 12 performed in the world took place in Spain, more than in any other country and, in March last year, a team of 30 in Barcelona carried out the first full face transplant, including teeth, palate and jaw, on a 31-year-old man who had shot himself in a hunting accident.
And it was Spanish surgeons who performed the first transplant of a windpipe manufactured from a patient's own stem cells, which meant that the recipient, Claudia Castillo, 30, escaped a lifetime of immunosuppressant drugs.
But in the routine yet emotionally fraught business of persuading the families of those who have died to donate organs, Spain has also shown the rest of the world the way. The UK is one of many countries that have taken lessons – last week the founder of the Spanish organ transplant network, Dr Rafael Matesanz, was advising Colombia.
Spain has about 5,500 people on the transplant waiting list, compared with about 8,000 in the UK. It has only two-thirds the UK population, but the impressive part is the proportion of families who say yes to organ donation at the moment of death. In the UK, it is 60%. In Spain, it is up to 85%. The organ donation rate in Spain is 34 per million. The latest figure for the UK is 15.5.
Pérez and González are fundamental to Spain's success, according to Matesanz. It's not about donor cards, registers or "presumed consent" but about the teams of transplant co-ordinators in every hospital. "The key is organisation. European people are not that different from one country to another. What really changes is how you approach the moment of death," he says.
In Spain, he says, when a patient arrives in critical care after an injury, heart attack or stroke "there is no limitation to the care if there is a slight possibility to save the patient's life". Medical staff carry on trying beyond much hope of resuscitation or recovery and there are a high number of critical care beds. Spanish families are grateful.
It also means that most of those who die in hospital are certified brain dead on a ventilator, which makes more organ donation possible.
At that point, the transplant co-ordinators will go to see the family. At the Reina Sofia hospital in Córdoba in Andalucia, in the deep south of Spain, but less than two hours from Madrid by impressively fast train, the lead co-ordinator is Juan Carlos Robles Arista, not a surgeon but an intensive care specialist.
Robles and usually another member of the team see the family after they have been told of the death by the treating doctor. Some people in Spain carry donor cards, but the wishes of the family take precedence. The importance of the family in Spanish healthcare, who help feed and care for their relatives in hospital day by day, cannot be over-estimated.
"The first and most important thing is the reaction to the announcement of the death," he says. "That is a hard moment for the family and also for the doctor. It is a painful situation but my job is to explain to the family that in their pain, they could find happiness in helping others."
It's often not one discussion but a protracted conversation. In his 13 years in the job, Robles has found that every family is different. "Sometimes you think it will be difficult and they say yes, of course." What matters above all, he says, is that the doctor believes in the importance of his work. "If you don't believe in what you are doing, you are not able to explain the comfort and happiness of this kind of thing." Do relatives ever come back and thank him for encouraging them to donate? "Many of them, many."
Uxue Gómez Iglesias, 23, is in the hospital, as she has been every day for the last month and will be for the next month, feeding and talking to her mother, who has undergone a double lung transplant. Milagros Iglesias Bello, 54, had emphysema and had been confined to bed wearing an oxygen mask for two years. Her daughter, smiling broadly, pulls out snapshots from last week. Her mother is sitting up and starting physio.
"We are from the Basque country but we now live in Seville," she says. "I was working as a fruit seller but I had to give up my job." It is unthinkable that one of the family would not be with her mother every day. More remarkable still, since she and her mother have no money and Seville is 45 minutes away, a lung transplant charity called A Pleno Pulmón has provided a flat in Córdoba where she now lives for free, and her mother will recuperate for two months.
With the fall in road traffic accidents leading to fewer deaths in young people, the age of organ donors has risen. Spain's average donor is now over 55 and the oldest was 88. Living donations are also on the increase and encouraged. Giving a kidney to a relative should not jeopardise the future health of the donor. A small piece of the liver can be transplanted to save a child's life and will grow back in the donor.
Ramon y Cajal in Madrid has a unique collaboration with the La Paz children's hospital – its surgeons operate on the adult donor and transport the organ to the child at La Paz. The five-year-old whose uncle has agreed to donate – because neither parent is suitable – is older than most. "The child is normally three to five months old," says Pérez. "It takes 10 to 14 hours of surgery for the child who has very tiny blood vessels." Living donors are not the answer for adults, though. Pérez shakes his head. "We have only four or five a year. You have to take more than half the liver. There is a 1-2% mortality risk. In 2002, a New York Times journalist who was a donor died after surgery."
In Spain, transplants, which still seem to be on the exotic fringe in the UK, are a matter of national pride and appear to have been absorbed into the culture – the subject of the Oscar-winning film All About My Mother, directed by Pedro Almodóvar. On my visit to Córdoba, an art exhibition on the subject of organ transplant opened and I was handed the second volume of poetry on the subject by celebrated poets from the region, Tintas para la Vida II.
There is a stocky stone monument outside the Reina Sofia hospital to the donors and, every Tuesday, school groups come to be told about donation and have their pictures taken with donor cards. It's not the card that matters – it is the discussion the young people will later have at home with their parents.
Spain's hospitals, built in the years after Franco when the autonomous regions were given charge of healthcare, are trusted and admired. The 30-year-old Reina Sofia hospital is the pride of Córdoba and its biggest employer. Of the 300,000 inhabitants, 5,000 are employed there. It is big, bright, beautiful and hi-tech. Questions about hospital superbugs are met with incomprehension.
We walk down a corridor with a glass wall, feeling intrusive. Behind it are sterile isolation rooms where young people with no hair are lying on beds in blue hospital pyjamas. They have wifi, computer screens, music systems and television. Some look round startled by passers-by who are obviously neither medical staff nor relatives.
Wandering about a hall filled with natural light are a large number of people, chatting as they wait to be called in when their relative comes out of surgery. All of the 33 operating theatres are in use. Further on is a room with numbered lockers and numbered fully reclining chairs with blankets, a shower and a toilet, where relatives can wait overnight.
None of this looks cheap, yet Spain's healthcare spending is not excessive. "We only spend 6% of GDP," says Dr José Martínez Olmos, secretary general of the ministry of health, although if you add in private sector spending, it reaches 8%. Most people use the state sector. As in the UK, the private sector offers shorter waiting lists, but for major illness, emergencies or cutting-edge treatment, public hospitals are the place to go.
"The healthcare system in Spain is not expensive," Olmos continues. "We spend €1,600 per head per year. This is a price that a developed country can afford."
Doctors' salaries are lower than in the UK - perhaps €100,000 a year for a hospital doctor with 20 years' experience - and there has been a salary cut for medical staff because of the economic crisis. Yet, says Olmos, "that's a high income for Spanish citizens. The president earns €80,000 a year." And there appears to be no great medical migration for higher salaries abroad.
It's hard to square the low cost with Spain's cutting edge medical achievements and not just in transplants. "Everything that medical science has achieved is part of our healthcare system," says Olmos. Nor do they turn down new and expensive drugs - although they insist on renegotiating prices with drug companies in future years and Olmos admits they "are looking at Nice" (the National Institute for Health and Clinical Excellence, which assesses the cost-effectiveness of medicines in the UK).
Spain faces the same ageing problem as the UK. Martínez Olmos, talks of a big push on tackling the chronic diseases of older people in the home, in order to keep them out of hospital. It's been a theme of the NHS for years now too.
But there is every chance that Spain will deal with the health and social needs of its booming elderly population better than Britain. The massive advantage Spain has is the family. The old bonds may have worn thin in the fast-paced cities, but essentially the commitment of the younger to the older generation is still there, especially in the rural areas.
Just as Uxue Gómez Iglesias, at the age of 23, will give up her job to look after her mother, so families will care for their ailing and elderly relatives at home for as long as they can. And, interestingly, while the Spanish talk much of "the crisis" and Olmos admits that healthcare costs are rising by 5-6% a year, there is no discussion of cutbacks either among medical staff or the population at large. Any mention is greeted almost with a shudder and pushed aside. Spain's healthcare is good and nobody wants to settle for less.
“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You
