Information about organ donation and the Donor Register must be more neutral, according to the Ministry of Health, Welfare and Sport (VWS). Volunteers who were themselves involved in organ donation will no longer give full guest lessons in schools from this month. This has been decided by VWS and the Dutch Transplantation Foundation (NTS) – which provides information on behalf of the ministry.
The approximately fifty volunteers, who received or donated an organ themselves, or who are relatives of a donor or recipient, gave about 550 guest lessons each year. They told their story at schools or at associations. Those lessons “mainly focused on the pro-donor story,” explains the NTS. This came out of an evaluation. From now on, information will always be given by ‘trained teachers’. If a school “needs that”, an experience expert can come by to tell his or her story additionally.
The decision is related to the introduction of the new donor law in July 2020. Until then, the information had always been promotional, according to the Transplantation Foundation, but that will change with the introduction of the new law. That law is in itself already ‘steering’, writes the ministry: anyone who does nothing is automatically registered as an organ donor, for a ‘no’ someone has to take action. For that reason, the ministry states, „the provision of information should about the law to be as undirecting as possible”.
What does that balanced information look like? According to the ministry and the foundation, attention should be paid to ‘less positive experiences and considerations’: reasons not to opt for donation, for example, the chance of medical complications and risks for people who receive an organ. The experience of the next of kin must also be addressed. For example, the way of saying goodbye is different with donation. A donor can be on a ventilator for longer while waiting for a transplant operation, the ministry says, which can be “taxing” for loved ones who want to say goodbye.
The fact that volunteers have already told us about this does not detract from this decision. “The mere fact that there is someone in front of the group who has received a donor organ himself is experienced as a pro-donor,” says the NTS.
Volunteers are angry and disappointed. Ludo Hellemans, for example, a 74-year-old biologist from Maastricht, finds it “very blunt to say that we, as experts by experience, are unsuitable to provide balanced information”. It is “downright hurtful and insulting and contrary to common sense.”
Hellemans received two corneas from two donors. He has Fuchs’ dystrophy, a condition in which the cell layer that keeps the cornea clear dies. His vision continued to deteriorate a little further. The only thing that could save him from blindness was a transplant, his doctor said. “I was in shock,” says Hellemans. “I asked: is there no other solution? Then the doctor started talking about a guide dog.”
Since the surgery, he sees better than in the past forty years. “I came to live in Maastricht in 2003. I thought I knew the city. The details, the colors! I’ve struggled with my vision for years, you can’t imagine how meaningful these transplants are to me.”
Moral apple
That story was central to his guest lectures. Educating is his way of giving something back.
Of course he is positive about organ donation, “I can finally see again!”, but in his story, he says, there was room for pros and cons. He had received clear instructions from the NTS, and had previously accompanied fellow volunteers on a number of occasions. “I passed on information soberly. And the initiative always lay with the schools and the associations.”
Hellemans calls experiential experts of great importance. “It makes organ donation less abstract. I am convinced that that story will make more people think.” Like other volunteers, he is pleased that the initial plan – no more volunteers in schools – has been adjusted after talks with the ministry: they can now make a contribution if schools ask for it.
The Kidney Foundation, which objected to the original plan, is also happy with the compromise. Kidney Foundation director Tom Oostrom: “You must clearly indicate that no one is obliged to make a certain choice, but at the same time the government has the task of improving public health. And organ donation is life-saving, so that importance must also be underlined.”
VWS recognizes the complexity of neutral information. The new communication plan that accompanies the law states that a balance is being sought “between neutrality with regard to choice and explanation of what organ donation means.” That’s exactly where it rubs: the Advertising Code Committee once pointed out in 2019 that naming the current shortage of organ donors “in any case makes a moral appeal to the recipient to become an organ donor”.
The NTS also recently stopped attending trade shows. “The recruiting character to encourage people to register in the Donor Register has been released,” the NTS wrote to volunteers. “After all, everyone over the age of eighteen is registered.”
A version of this article also appeared in the newspaper of 26 July 2022