Er has been living with a donor lung for two decades and couldn’t be thankful for it. She donated a friend’s organs and never met the recipient. In principle, postmortem organ donations are anonymous in Germany – and for good reason. Nevertheless, in the run-up to the day of organ donation on June 4th, there is criticism of the strict ban on contact between transplant recipients and the relatives of the donors: Many say that “a culture of thanks” would help relatives.
Canadian doctors have recently called for easier contact between the recipient and the donor’s family. “A growing body of case law, both in Canada and internationally, is recognizing that restrictive approaches to donor family-recipient contact are outdated and unfairly restricting the autonomy of consenting stakeholders,” argued Canadian medical ethicist Charles Weijer in Canadian Journal of Cardiology”.
Contact can help manage grief, promote healing, and “honor the gift of life from the deceased donor,” added co-author Nicholas Murphy.
“In Germany, that’s not legally possible,” explains Burkhard Tapp from the Federal Association of Organ Transplants. “Post-mortem organ donations are basically anonymous.” The transplant centers are not allowed to make any contact, not even to name their age or gender, let alone their place of residence. “And that makes perfect sense,” says the 66-year-old from Sasbach am Kaiserstuhl (Baden-Württemberg), who has been living with a transplanted lung for 20 years. “Otherwise you would only raise false expectations or produce disappointments.”
Goldina from Leipzig, who does not want to see her full name in the media, also thinks the ban on contact is correct in principle. What happens if the organ recipient does not live up to expectations, for example if the liver recipient orders a beer at the meeting, the lung transplant recipient smokes, in short, “if you have the feeling that he is not handling this gift with enough care”?
On the other hand, thanks are important for the relatives, says the co-founder of the “Donor Families Network”. “It is confirmation that the decision to approve the deceased for organ donation was correct.”
“Later I was insulted as a murderess”
Goldina had to justify her decision against a lot of resistance: she had power of attorney for a friend who was declared brain dead after an artificial coma. The family was undecided, so she made the decision – to donate an organ. “Later I was called a murderer for it,” she says.
She never found out who was allowed to live on thanks to her friend. But she sought contact with other transplant recipients. For years she has been celebrating her birthday with a man whose second life began on that day with a heart transplant. Seeing that this friend and other transplant recipients are doing well helps her not to doubt, but to see “that you can be proud that you saved lives with the donation”.
Since 2019 there has been another way of saying thank you with legal certainty: with an anonymous thank-you letter. If the relatives have given their consent, the letter is forwarded via the transplant center to the German Foundation for Organ Transplants (DSO), which acts as a switchboard so that both sides do not come into contact.
“Thanks are hard to put into words”
“Dear donor family…” begins the anonymous letter from a kidney transplant recipient that the DSO has published on the website Dankesbriefe-Organspende.de. The man thanks the “responsible and extraordinarily humane person” who made it possible for him to live a healthy old age. “The gratitude to her is so great that it can hardly be put into words.”
The number of such letters is “manageable,” says Anne-Bärbel Blaes-Eise, who coordinates care for relatives at the DSO. But she knows from conversations with the bereaved: “Many donor families want these letters.” It helps them to see that the deceased lives on in a certain way. At the relatives’ meetings organized by the DSO, the strict requirement of anonymity is regularly “a big issue,” says Blaes-Eise. “Many find it difficult to understand why this is not possible if both sides agree. But ultimately the law should also protect both sides.”
Burkhard Tapp from the Federal Association of Organ Transplanters does not believe that moving away from the obligation to remain anonymous would lead to more organ donations: “I think that thesis is daring.” Goldina is also “ambivalent” on this question, but also says: “I sometimes miss a culture of gratitude.”
“We are facing a dramatic development”
At the beginning of this year, the number of organ donations had fallen massively – by almost 30 percent compared to the first quarter of the previous year. The number of donors was 176 in the first three months of 2022, compared to 249 in the same period. The number of organs removed after death fell from 778 to 562 organs. Axel Rahmel, Medical Director of the DSO, was “deeply concerned” in view of these figures: “We are facing a dramatic development for the approximately 8,500 patients on the waiting lists.”
The DSO suspects that the work overload in the clinics could be a reason: “There is a high probability that fewer organ donations could be realized as a result than would have been possible under normal circumstances.” The number of no votes after the consultations also increased to. Another reason is that the deceased with a corona infection were excluded from organ donation.
The events for the “Day of Organ Donation” will take place this year on June 4th in Mainz. Among other things, organ recipients want to hold up posters that state the number of years of life they have gained since their transplant. The “Gift Years of Life” campaign is intended to show how great the gift of an organ donation is. “In view of the current figures, the probability of becoming an organ recipient is four times higher than becoming an organ donor,” calculates Tapp.