Organ Donation in Germany Crisis of Confidence

Personal ID card for organ transplantation; Photo: © Bundeszentrale für gesundheitliche Aufklärung
Personal ID card for organ transplantation | Photo (detail): © Bundeszentrale für gesundheitliche Aufklärung

The German Foundation for Organ Transplantation registers a historic low in organ donation: in 2013, there were only 876 organ donors (not including living donors). In the minds of many citizens, lack of trust in the transplantation system is now combined with uncertainty and fear.

German transplant medicine is in a deep crisis of confidence. Since manipulations in the procurement procedure of donor livers were detected in several German transplant centres in the summer of 2012, the number of organ donations has sunk – in 2013 by nearly 14 per cent. Over 11,000 Germans are on the waiting list of the organ exchange centre Eurotransplant. Only those patients are included for whom the risk of such an operation is justifiable and whose chances of a successful transplantation are good. Additional inclusion criteria are waiting time, urgency (determined by experts) and the national organ exchange balance, which is intended to ensure the fair distribution of organs within Europe. Although the manipulations occurred exclusively with livers, patients waiting for a kidney have particularly suffered under the consequences of the scandal. In Germany in 2010 there were 2,937 kidney donations (not including living donors); two years later the number was only 1,789. The demand is around 8,000 kidneys.

Consenting instead of dissenting

In Germany, kidneys, heart, liver, lungs, pancreas and small intestine can donated. Since November 2012, the so-called “decision solution” has been in effect. This means that the health insurance funds send information at regular intervals to all insured persons aged 16 on organ donation. This includes a donor card. On it can be entered whether a donation is consented to or not. Moreover, individual organs can be excluded from transplantation. If a brain-dead patient has left no written statement, the next of kin present at the hospital must make the decision whether or not organs are to be donated.

Thus in Germany those who wish to donate an organ must actively decide to become an organ donor. This is a so-called opt-in procedure. Of 100 Germans, however, only an average of twelve decide in favour of donation. Only in Denmark is the willingness lower, at 4.25 per cent. In other European countries – for instance, in Spain, Italy and the Czech Republic – the “dissent rule” obtains, an opt-out procedure. In these countries a person must expressly dissent against organ donation, or else his consent is assumed. This procedure leads to significantly higher donor rates.

Aversion to donating because of the crisis in confidence

In Germany there is a big gap between the willingness to accept a donor organ and the willingness to donate one. A Forsa study published in March 2012 found that 85 per cent of those asked would accept a donor organ. At the same time, 78 per cent had no organ donor card. Nearly a fifth of the respondents rejected donating an organ: 67 per cent feared abuse of the donation through organ trafficking and 52 per cent feared that doctors would no longer do everything to help them if they had a donor card.

On 1 August 2012 an amendment in the Transplantation Act came into force. Under new harmonized EU standards, all data about donor organs, including their procurement, preservation and transportation, will now be gathered throughout Europe. Up to now, the German Foundation for Organ Transplantation coordinated the data of the deceased and kept records of all data about donors. The list of recipients in turn was kept by Eurotransplant in the Netherlands. The Institute Aqua was responsible for quality assurance and also documented follow-up treatments. It is to be hoped that the pooling of data in the form of a transplantation registry will provide information “about the relationship between quality of the donated organ and the quality of life of the recipient”. And inspire new confidence in the system on the part of the population.