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Life after death: Why it's crucial we talk about organ donation

23:58 03/09/2017
Ahead of European Day for Organ Donation and Transplantation on 9 September, we hear from Dominique Van Deynse, transplant co-ordinator at UCL hospital in Brussels

What is the law in Belgium on consent for organ donation?
We’ve had a law based on presumed consent for 30 years. It means everybody in the country is a potential donor. Within the law we can also specify our wishes for what happens to us after death, so we can say we don’t agree with the principle of presumed consent and register as a non-donor at the town hall. In the same way, we can also register our wish to be a donor. In 2005, there was an awareness campaign called BelDonor, which led to an immediate increase in positive declarations, and no increase in opposition. The majority of people are not registered, so when a patient dies, the physician approaches the family to find out the person’s opinion on organ donation. If they say they were against it, we stop the procedure. If not, we can continue.

How does the process of transplantation work?
We have seven transplant centres, at university hospitals, and we can only do transplants at these hospitals. There are three in Brussels, three in Flanders and one in Wallonia. These hospitals have a network of smaller local hospitals, and every hospital with an intensive care unit can refer a potential donor to the transplant centre.

When we get a call from a physician who has a patient confirmed dead, and we have checked whether the person consented to donation, we receive blood samples to get information about blood groups and other things. I ask about medical history, medication etc, to get an overview of the potential donor, and when the data is collected, we send it to Eurotransplant.

What is Eurotransplant?
It’s an international foundation that allocates organs to a recipient on the waiting list in one of the member countries – Belgium, Luxembourg, the Netherlands, Germany, Austria, Slovenia, Croatia and Hungary. There’s an algorithm for the allocation of each organ to ensure transparency and objectivity. The organs are allocated to a specific patient, not to a country. Sometimes we have a donor in Belgium with five organs and nothing is allocated to Belgium.  

This is Eurotransplant’s 50th anniversary, and there have been almost 165,000 donors since it started. Belgium was one of the first members, and the first donor referred via Eurotransplant was from Ghent. The organisation also has contact with other countries outside the network. Sometimes there might be a potential donor in France or Spain, for example, where they might not have a suitable recipient. So they can offer Eurotransplant a particular organ, in the hope there is a recipient within the network. A few years ago I had such a situation with a child’s lungs. Fewer children are on the waiting list for a lung transplant, and there was no recipient in a Eurotransplant country, so we found a recipient in France.

How are organs moved between countries?
When we have a donor, Eurotransplant might tell us they will take the heart for someone in Berlin, the lungs for a patient in Vienna, and so on. These teams will come to the hospital, say in Arlon, to harvest the thoracic organs, so we have to organise the visit and transportation of the organs. We travel to the hospital in a priority car with a surgeon, an assistant, a procurement nurse and a transplant coordinator. We go to the operating room to procure the organs, and the thoracic teams take the heart and lungs back to Berlin or Vienna. Then we put the abdominal organs in special bags and send them to the different recipient centres. If the liver is for Ghent, we send it by car. If the kidney is for Ljubljana, Eurotranplant will tell me it must go on a particular flight from Zaventem. Timing is so important. We work with a specialist transport company; they give the kidney to the pilot and the kidney travels in the cockpit. For organs like that, we can use a normal flight, so if you’re flying somewhere on holiday, perhaps there will be a kidney in the cockpit. Sometimes for organs like heart, liver and lungs, we need to organise a private flight. 

How are organs matched to recipients?
The algorithms are vital and the Eurotransplant manual is the size of the bible. It’s important to have Eurotransplant, so we’re sure every allocation will be objective. The matching is different for each organ. You have to have a blood group match, and a size or weight match: you can’t have a heart from a child transplanted to a 100kg guy. We need specific information to accept or refuse organs. For the liver, for instance, we have a calculation called Meld, which measures liver disease. It takes information from blood samples, and we put the patient on the waiting list based on their Meld score. The maximum is 40, but at 40 you will die in the next few days without a transplant. When we have a potential donor, we need information about the function of the liver. A fatty liver isn’t good. If there are lots of enzymes, it’s no good. If there is trauma, it’s no good. Once we have an overview of the quality of the liver, we can offer it to a patient via Eurotransplant. 

How do the Eurotransplant member countries compare?
In Belgium in 2016, there were 28.4 deceased donors per million inhabitants. In Germany, where they don’t have presumed consent, there are just 10.1 per million for the same period. Legislation is probably one of the most important factors. In Germany they will procure organs only from people who have explicitly said they are in favour. The difficulty is that a country like Germany is big, with a lot of potential donors. They have more patients on the waiting list, so they can absorb organs from outside the country. That’s why we have regulation and algorithms to make sure organs are allocated fairly. 

What should people know about organ donation?
One in four people on the waiting list for a new liver will die before they get a transplant. It’s why we need to talk about organ donation, and get people to register their wishes. Yes, you could be a potential donor, but first of all, we are all potential recipients. I was at a conference and I talked to a woman who said she totally disagreed with presumed consent, and I asked what she would do if one of her children needed a new organ after illness. She had never thought of it in that way. It’s so important to talk about organ donation, with friends, within your family. And register officially on the national registry (this can be done at your local town hall). That’s the only way to have your wishes known.

Photo (c)  Hugues Depasse (CAV-CUSL)

Written by Sally Tipper