Organ donation: a very personal decision

In Germany, around 8,400 people are currently waiting for a donor organ. For many, an organ donation would be life-saving. The demand for donor organs is far greater than the supply: figures from the German Organ Transplant Foundation (Deutsche Stiftung Organtransplantation, DSO) for 2023 show that 965 people in the country donated over 2,800 organs after their death. Kidneys were the most commonly donated organs.

As well as deceased organ donation (in other words, donation after death), a living organ donation is also possible. With deceased organ donation, a person who, for health reasons, is dependent on it, receives a new organ from a deceased donor. In these cases, the kidneys, heart, liver, lungs, pancreas, small intestine, and various tissues such as the cornea can be used. 

With a living organ donation, an organ or part of an organ is taken from a healthy person and put into the patient. However, only some organs are suitable for this purpose – for example, transplants of one kidney or part of the liver are possible. 

The Transplant Act passed in 1997 regulates the donation, retrieval, allocation and transfer of organs that are donated after death or while the donor is living. To prevent abuses, the law makes it illegal to trade in organs and tissue.

Deceased donations – consent and confirmation of death

The concept of “decision solution” (“Entscheidungslösung”) applies in Germany. This means that a deceased donation is only possible with the donor’s consent. In other words, the donor must give their consent to the organ or tissue donation while still alive. A person is entitled to make this decision after their 16^th birthday. But a person can reject organ donation when they are 14. If the deceased person has not made a decision, the next of kin makes the decision based on what they presume the deceased person’s wishes would have been.

It is an essential condition for retrieving organs from deceased persons that brain death has been confirmed. For this purpose, two specialist doctors must confirm, independently of one another, that the cerebrum, the cerebellum and the brain stem have definitively ceased to function, and they must record these findings. This ensures that the organs are only retrieved if the donor is dead beyond all doubt and that doctors can do nothing more for them.

For the purpose of organ donation, the cardiovascular system must be kept going artificially until the organs are retrieved. As the heart stops first in most deaths, only very few deceased people can even be considered as potential organ donors. Things are a little different with tissue donation. As tissue usually has less of a blood supply than the organs, a donation may still be possible for up to 72 hours after the cardiovascular system has stopped functioning. Confirmation of brain death by two experts is also a prerequisite for tissue retrieval.

In general, there is no upper age limit for an organ donation – the crucial factor is the health of the deceased person and the condition of their organs. There are also only very few illnesses that definitively rule out an organ donation. These include, for example, acute cancers and infectious diseases. With other illnesses, the doctors concerned decide on suitability for donation on a case-by-case basis.

Living organ donation – protecting the health of the donor

A living organ donation can have risks attached for the healthy donor. So there are strict requirements. Only organs from close relatives or loved ones can be considered for donation – for example, from parents, children, or life partners – or from someone who is obviously personally attached and close to the organ recipient. The potential donor must be an adult and competent to give their consent. They must also consent voluntarily to the removal after it has been fully explained, and must be suitable to be a donor in the doctors’ judgment. A living donation committee makes an assessment to ensure that consent is given voluntarily.

After brain death and consent to donation have been established beyond all doubt, experienced surgeons remove the organs with the same care they would use in an operation on a living patient. They then close the surgical wound and hand the donor over in a dignified condition in case they are to be laid out prior to burial or cremation. Friends and family can say goodbye to the deceased person as they wish.

The donated organs are carefully examined and the tissue characteristics and blood group are determined so that suitable recipients can be identified. This is done by the Eurotransplant Foundation. A non-profit organization, Eurotransplant coordinates the exchange of all donor organs in eight European countries, so that all patients on the waiting list can be provided for as efficiently and fairly as possible. People who are in acute, life-threatening situations are given priority when allocations are made.

If Eurotransplant has identified a suitable recipient, the Foundation notifies the relevant transplant center, which immediately begins to prepare the recipient, in order to minimize the time between retrieving the organs and transplanting them, and thus increasing the chances of success.

In terms of willingness to donate organs, what is known as the decision solution (“Entscheidungslösung”) applies in Germany. This means that organs and tissue can only be retrieved from deceased persons for transplantation purposes if the individuals have given their consent while alive. This decision is ideally documented in writing.

 The following forms of written documentation are possible:

•    on an organ donor card
•    in an entry in the central Organ Donation Register
•    in an advance healthcare directive or in another written declaration 

If there is no written declaration, doctors in the hospital ask the next of kin about the presumed wishes of the deceased person, and ask them to make a decision based on these. This sort of decision at a time of mourning can be an additional stress on relatives, or be too much for them to take on. If the deceased person has filled in a donor card, created an entry in the Organ Donation Register or put an advance healthcare directive in place, this can spare loved ones this kind of stress and ensure that the person’s own wishes are carried out.

The statutory and private health insurance providers regularly send their policy holders informative material and an organ donor card by post. But the pre-printed card, in the same format as a bank card, is also available in many medical practices, pharmacies, hospitals and registry offices.

An organ donor card can also be requested, free of charge, from the “Federal Center for Health Education” (Bundeszentrale für gesundheitliche Aufklärung, BZgA).

The card can also be filled in online and printed out.

The organ donor card should be easy to find. It’s a good idea for people to always keep their card with them, together with their personal documents. It’s important for people to also inform their next of kin about their decision and to let them know where the donor card is kept.

Germany’s register for declarations on organ and tissue donation (Organ Donation Register) is a central electronic directory in which you can digitally submit a personal declaration in favor of or against your organs and tissues being donated after your death. Your data is stored there securely and protected from access by unauthorized third parties. In the event of your death, only authorized hospital staff can access it. This allows them to determine whether you have decided to donate your organs and tissues following confirmation of your death. 

Creating an entry in the register is voluntary and free of charge. You will be able to access your declaration in the Organ Donation Register at any time. Your entry can be changed or withdrawn at any time. 

You can submit your personal declaration in favor of or against your organs and tissues being donated on the websites of the Organ Donation Register. 

How is the Organ Donation Register being introduced?

The Organ Donation Register is being introduced on a phased basis by the Federal Institute for Drugs and Medical Devices (BfArM). The following steps are planned for its introduction:

• Since 18 March 2024, it has been possible to enter a personal declaration online in the Organ Donation Register. To do so, an identification document with an eID function is required – for example, a personal identity card.
• By July 2024, all organ retrieval hospitals will be connected to the Organ Donation Register and will be able to access the declarations stored there.
• As of summer 2024, the register will be accessible from the ePA app and the health insurance provider apps.
• As of 1 January 2025, tissue establishments will also be connected to the Register. 

How can I reliably document my decision while the Register is being phased-in?

To ensure that your decision is reliably documented while the Organ Donation Register in being introduced on a phased basis, you should also document your decision on an organ donor card or in an advance healthcare directive.

It is also important to keep your loved ones informed about your decisions regarding organ or tissue donation.

More detailed information about the Organ Donation Register is provided on the website of the Federal Center for Health Education (Bundeszentrale für gesundheitliche Aufklärung, BZgA).

The team who run the organ donation hotline of the Federal Center for Health Education (“Bundeszentrale für gesundheitliche Aufklärung”, BZgA) are available to answer any questions about organ and tissue donation. The line is staffed from Monday to Friday between 9am and 6pm toll free on 0800 9040400.