Organ donation: Make your own decision during your lifetime - also "to relieve relatives"

As transplant officers at their clinics, they are the first point of contact in an emergency: Dr. Markus Niklas (left) and Dr. Florian Amor. © Ralf Ruder

Hardly anyone likes to think about their own death. But you should. A conversation about organ donor cards, organ harvesting in the district and what brain death is.

Weilheim – It has always been on the first Saturday in June, for 40 years: the day of organ donation. The focus is on fates and saved lives. In the course of this, the Heimatzeitung spoke with Dr. Markus Niklas (53), senior physician at the Clinic for Anesthesia and Intensive Care Medicine in Weilheim, and Dr. Florian Amor (44), head of the intensive care unit in Schongau. They are transplant officers in the two clinics.

Do you have an organ donor card?

Dr. Florian Amor: Yes, I own one.

Dr. Markus Niklas: Of course, I also have such a card. In addition, my wife and other people around me know about my attitude to this topic.

Can your organs be donated?

Niklas: Yes. I have had many good experiences with organ donation, both as a doctor and in my personal environment. I also know several people who have had organs transplanted and have been able to live well again since then.

Amor: Yes, it's important to me that my death is not pointless when the time comes.

What conditions must be met for a dying patient to be considered as an organ donor?

Niklas: First of all, the affected patient must have had an illness in which the brain was damaged. For example, a stroke, cerebral hemorrhage, lack of oxygen, or other serious injury. The second requirement is that he must be ventilated. Thirdly, we have to note that important reflexes are lost in the patient: that he can no longer cough, that he does not react when saliva is sucked out of the mouth, that the eyes no longer react or the like. These changes usually occur within the first 72 hours, when there is swelling and entrapment of the brain. Only if these conditions are met, one can think that the patient might have brain death. Only in the event of brain death would he be medically considered as a donor.

What happens if brain death is suspected?

Niklas: Investigations are being initiated to determine irreversible brain loss. There are very precise guidelines from the German Medical Association. It is important that the consciousness of the affected person is no longer there. For this, the administration of drugs must be paused long enough. The brainstem, cerebrum and cerebellum are examined. At the end, it is checked whether the patient could still breathe independently.

Who diagnoses brain death?

Cupid: He has to be confirmed by two independent doctors. Both must have experience in intensive care, one must be a neurologist or neurosurgeon.

Niklas: The determination of brain death must take place at two different times. This ensures that brain functions are irretrievably extinguished. Here, apparatus methods such as the measurement of the no longer existing brain waves by means of EEG over a longer period of time or the detection of the no longer existing cerebral blood flow by means of CT are often used.

There are people who fear that as a potential organ donor you will not receive the best possible medical care. And that brain death does not certainly mean death.

Niklas: I can well understand this fear. But no one is treated worse just because they are an organ donor. On the contrary, the examinations are carried out with particular care. This is because organ donation is only possible if the patient continues to be artificially ventilated and intensive care measures are continued. As doctors, we are not only obliged to do so, but it is also our declared will to save or heal every human being if possible. Only when this is no longer possible, a donation can be considered. Unfortunately, there are people who deny that a brain-dead person has died because his organs are still artificially kept in function. Without equipment and further intensive care, this person's cardiovascular system would collapse immediately. Incidentally, after brain death has been detected, the devices must be switched off in any case in the foreseeable future, since the person has died. This is done independently of organ donation. In my experience, people are less afraid of devices being turned off too early. They are more afraid that they will be connected to devices pointlessly.

Organ donation in Germany

If your own organs no longer function due to an illness or as a result of an accident, sometimes only a donor organ can help. Then the great anxiety begins for those affected. After all, it is difficult to predict whether a suitable organ will be available in time.

In many cases, patients could be helped in the past. According to the German Foundation for Organ Transplantation (DSO), a total of 1963,2022 organs were transplanted in Germany from 149 to 458. Most of them are post-mortem – which means that the donors have been diagnosed with brain death. In 2022, 2662 organs from 869 deceased people were donated. Since 2013, the number of organ donors per year has fluctuated between 797 (2017) and 955 (2018).

Anyone who is dependent on a donor organ is placed on the Eurotransplant waiting list. The Foundation organises the allocation of donor organs in eight European countries: Austria, Belgium, Croatia, Germany, Luxembourg, the Netherlands, Hungary and Slovenia. As of January 1, 2023, the waiting list from Germany included 8826 required organs – including 6683 kidneys, according to the DSO. German patients also had a liver (841), a heart (699), a lung (286) and a pancreas (317). DSO statistics also reveal the sad side: more than 700 people had died in 2022 while waiting for a donor organ.

Further information can be found at www.organspende-info.de, www.dso.de and www.eurotransplant.org.

Once brain death has been established, what happens next with regard to a possible organ donation?

Amor: Our job is to meet the patient's request. We check whether there is a living will and whether he would have been willing to donate. We also talk about these topics with relatives.

What happens if a person were to donate organs, but he has a living will, according to which the machines must be switched off?

Niklas: There are a lot of people who have stipulated in their living wills that they do not want to be ventilated. It is therefore important that it is noted in the living will if you want to be an organ donor. Many templates now have a section where you can explain whether you want to donate your organs. It also states that it is accepted for an organ donation that the intensive care measures will be continued for some time. If this is not noted, there may be a conflict.

Cupid: The DSO (German Foundation for Organ Transplantation, editor's note) provides text modules for this purpose, which can be included in a living will.

In addition to an organ donor card and living will, is there anything else you should think about during your lifetime?

Cupid: The living wills should be positioned where they can be found. For example, there are people with pre-existing conditions who pin them to the refrigerator door so that rescue workers can take them with them in an emergency.

Niklas: For me, it's important to think about organ donation and make a decision. It may well be: "No, I don't want that." In addition, you should record your decision in writing and inform your relatives about it. You can also revise your decision to donate organs, but you should make it. When a relative learns that his loved one has died, i.e. has brain death, this news is a shock and a great burden. If he is then asked to make a decision that the deceased has shirked all his life, this burden increases many times over – and this in a situation in which the relative is already overwhelmed. Therefore, in my opinion, everyone has the duty to relieve their relatives and to think for themselves.

Which relatives make the decision if there is no written document?

Niklas: There is a legally prescribed order: first the spouse, then the children and so on. It is important that it is not about the will of the relatives. It's about what they think the patient would have wanted. There are people who say, "I don't want this for myself, but I know my husband would have wanted it."

What if the relatives are unsure?

Niklas: As soon as there is even a small doubt, no organ donation will be realized. This is how it is regulated in Germany. However, it should be clear to everyone that the objection regulation exists in other countries. Anyone who does not object is a donor. In some countries, this also applies to tourists. Here, too, however, the relatives are consulted beforehand.

What happens when brain death has been established and consent has been obtained?

Cupid: To protect the recipient, the patient's entire medical history is examined. There may be further examinations until a decision is made as to which organs can be transplanted. The data is then passed on to Eurotransplant, where a computer system uses algorithms to search for the recipient that best fits. The transplant centers of the appropriate recipients are then called.

Niklas: Where the organs go is independent of us. Even the doctors who diagnose death have nothing to do with this. External surgeons from transplant centers come to remove organs. In the operating room, everything is the same as in other operations. After the organs have been removed, the deceased is given medical care, dressed and placed in a bed. Then the relatives can say goodbye in a separate room. This is important for families.

Cupid: The organs are implanted in transplant clinics. A lot is being done in the German healthcare system to ensure that transplants are possible at any time.

There is the accusation that money can be made with it.

Niklas: It's absurd. Organ trafficking is prohibited in Germany.

Amor: Besides, it's not about money. All hospitals with intensive care units are obliged to provide transplant officers.

How high is the willingness of the population to donate?

Niklas: Not as high as it used to be. Many people are dying on the waiting list.

Earlier means?

Niklas: During the Corona pandemic, organ donations have declined. Due to complex reasons such as staff shortages in intensive care units, the older age of potential donors and a lack of consent from relatives, the numbers have not recovered since then.

How often are organs removed from the hospitals of the Krankenhaus GmbH for a donation?

Niklas: It happens once every five to ten years per hospital in our GmbH. Every two to three years, someone comes into question for whom, for various reasons, the organs cannot be donated after all. Brain death occurs very rarely, so organ donation is not an issue in most deaths.

Cupid: Most people die from cardiovascular failure. In this case, organ donation is not allowed in Germany.

How many people does a single donor help?

Niklas: On average, three organs are donated per donor. A maximum of one donor can help up to six people. And some of them urgently need an organ. Some are running out of time. Others could be given a better quality of life. I'm thinking, for example, of the many dialysis patients who come to the hospital in Weilheim. They would be happy if they didn't have to spend hours on dialysis every other day for a few years and could drink fluids again. For them, it would be like a new life.

When was the last time a patient in Weilheim donated organs?

Niklas: That was in April this year. Two kidneys were removed from the donor and successfully transplanted to the recipient. The organ donor card could not be found, but the relatives knew that this was the will of the deceased.

And in Schongau?

Cupid: 2019 or 2020. One patient had brain death, but his will could not be determined. The relatives were not generally against a donation, but they simply did not know. In such a case, the DSO's requirements are clear. Nothing was done. That was a shame.

Because many people are hoping for an organ.

Cupid: Yes, being an organ donor saves lives.